Slow-moving AA / Pancytopenia, or What? [Archive]

David M

Sun Sep 20, 2009, 11:14 PM

Back in May 2000, after a round of sinus surgery, I went in for some allergy testing as part of the post-surgery sinus treatment. As part of the allergy testing, I was sent for a CBC. The allergy doctor called me at work and asked me to come in and re-take the CBC, since many of the results were low. A re-take of the CBC confirmed that my reds, whites and platelets were indeed low -- not dangerously low -- but enough to get everyone's attention. I was sent to a hematologist in Huntsville, AL, and I was put through a battery of tests (including a bone marrow biopsy & aspiration). The end result of all the tests showed that my bone marrow was hypo-cellular (about 25% active cells). I tested negative for MDS, and everything else.

I went in frequently at first for CBCs, and after a while I only went in every 6 months for checks. Through the years, my counts slowly continued to decline. When I first started getting my blood checked, my platelets were around 130K to 150K. Gradually they have declined until a few months ago when they were measured at 41K. Neutrophil counts are down to ~1.3. Hemaglobin has been down to ~9.5. Through the years, I have had 3 bone marrow biopsy & aspirations (the most recent one a few months ago)... still hypo-cellular with ~20% or less active cells. Tests were negative for MDS and PNH.

I was recently sent for a 2nd opinion with a hematologist (BMT specialist) at Vanderbilt. After looking at my test results and running some tests of his own, the doctor at Vanderbilt came to the same conclusions as my local hematologist. They both hesitate to call this AA... it is "unexplained bone marrow failure resulting in pancytopenia" or something like that... but the end-result is the same as AA -- it is just moving in slow motion! I asked the doctor at Vanderbilt what percentage of people with AA have it behave like mine, and he replied, "Almost no one." He said, it does not appear that my pancytopenia is immune-related; it looks more like the bone marrow is just "wearing out."

So, we have been watching this for 9+ years, and I am just now entering the "treatment zone" where treatments are being discussed. If things continue to "progress" as they have, most likely in the next year or so, I will require some type of treatment. Treatment options discussed have included growth factors (temporary measure), ATG, and BMT. ATG does not appear to be a good option for my particular case, since my bone marrow appears to be "wearing out." This leaves us with BMT -- some day... We have already starting to find a suitable match -- my siblings (bro and sis) were not matches... there were 23 preliminary matches in the 13 million member bone marrow registry.

So, at this point, we are in a "watch and wait" mode. My next appointment is not til December 22. This waiting is driving me a little bit crazy, but I am thankful not to have to be undergoing any kind of treatment at this time.

Well, that's my story... Does anyone else out there have (or know of) slow-moving symptoms like this? Is my case of AA, pancytopenia, or whatever it is, really that odd? Any words of wisdom? I'd love to hear from you!

Marlene

Mon Sep 21, 2009, 10:13 AM

Do you know if they checked your Iron, B12, folate, B6, Copper and zinc blood serum levels? Low normal of these nutrients indicates an insufficiency so find out if they tested these and get a copy of the results. Vitamin D should also be checked. Most doc do not give much credence to nutritional status so you really need to be your own advocate regarding these matters.

Also, you should get a work-up on your hormones.

Did they discuss the issue of "shortened telomeres" with you? The shorter the telomeres on your stem cells means they have shorter life span because don't replicate well. Which means ATG most likely won't work. You may want to pursue another opinion with NIH in Bethesda MD...they would check for that. I think most would have classified your condition as moderate AA by now.

If you are going for non-related BMT, you may want to check out Johns Hopkins. They have recently started a protocol which greatly reduces the severity of graft vs host disease in MUD transplants for refractory AA patients. I think they've had only three or four people go through the process and are having good results. So it is in the beginning stages and they don't have a lot of data.

Dick S

Mon Sep 21, 2009, 03:08 PM

David, I can appreciate what you are going through as I am going through the same thing with MDS. I have been on the "wait and watch' list thing for over three years now. Since Feb. 2006 I have seen my numbers slowly, oh so slowly drop down, but I am still not at the levels that will trigger any treatment so the Docs tell me. My HGB is just above 10, RBC at about 3, HCT at 31.7. Platelets are not too bad at 140K. Medicare and VA will not autherize treatment unless the Hemaglobin gets down to about 9. Due for a new BMB in October. In the mean time I slug around like a snail and need to rest a lot. Are you having any similar symptoms? Hang in there pal!

Lisa V

Mon Sep 21, 2009, 03:52 PM

David, I'm not sure I agree with the doctor who said "almost no one" has AA that acts like yours. We've heard from people with slow-moving MAA before, both here and on Aplastic Central, but perhaps the particulars of your case are different.

At any rate, I think if I were in your shoes I'd seek out an expert opinion right about now. You need someone who has seen more AA cases than most oncologists or hematologists and who is up on the latest research, such as the shortened telomeres angle that Marlene has mentioned. A few names that come to mind are Dr. Young at the NIH, Dr. Maciejewski at Cleveland Clinic and Dr. Brodsky at Johns Hopkins. I don't have any direct experience with any of them, mind you, but just based on the information shared here I would have confidence in any of their assessments of the situation.

Good luck!

Hawaii Bill

Mon Sep 21, 2009, 05:24 PM

Hi David,
I'm with Lisa about getting an expert opinion, and would like to add Dr Paquette at UCLA as another AA specialist to consider. After my first treatment for Severe AA using ATG in Dec 2006, I relapsed to a moderate form of the disease. Dr P advised using CsA alone, and it has recovered all of my counts (except that my platelets are stuck at 72k). I would think it is safer to treat you now rather than have to go with the more risky ATG/Prednisone approach later. Just my 2 cents..
Bill

David M

Mon Sep 28, 2009, 08:10 PM

All,

Thanks for your concern and your recommendations. Yes, I do feel run-down and tired quite often, but I still try to exercise some. Usually I find I can do much more than I feel like doing at the start.

I am looking into the other things that were mentioned in your responses. In fact, I emailed my doctor at Vanderbilt today and asked him about some of these things:
(1) In the testing at Vanderbilt, I was not tested for B6, Copper and zinc, but I was for the other things mentioned. (I have a feeling I was tested for the B6, copper, and zinc with my doctor in Huntsville, but I have been unable to locate those results... yet.)
(2) About the hormone workup: "no work-up on hormones per say-erythropoietin level was high"
(3) He conceded that my case could be slow moving AA or "smoldering" MDS, but the slow course is relatively rare for AA.
(4) He knows Dr. Young and Dr. Brodsky and will discuss my case with them.
(5) Telemore data is in research phases and not routinely done... but perhaps something will come of this in his discussions with Dr. Young and Dr. Brodsky.

Thanks for your help...

David M

JEZ

Fri Nov 20, 2009, 06:48 PM

magpie75

Mon Nov 23, 2009, 10:57 PM

David,
Just wanted to let you know that I also had very slowly progressing "Pancytopenia" over a period of 10 years until I was finally diagnosed with aplastic anemia in 2006. My local oncologist watched my blood counts and I had some bone marrow biopsys over the years, but is was watchful waiting until my counts really dropped off. When that time came and I started to experience more symptoms of severe fatigue, I was refered to a specialist at Johns Hopkins, Dr. Brodsky. So there are others like me who have the disease present in this way.

I did finally have a bone marrow transplant at JH using the new protocal and now my bone marrow works right again and I can say that I am completely cured.

David M

Sun Nov 29, 2009, 03:52 PM

Maggie,

Thanks for commenting on my "story." It sounds like your situation is very similar to mine. I have started reading your blog diary from your web site... but I haven't gotten very far (there is a lot there). As I am reading, I keep wondering if I am reading my future (or something close to it)?

I would love to hear more about your earlier history with pancytopenia, and the events leading up to your going to Johns Hopkins. I know that may seem sort of boring compared to the other info, but that is where I am right now in this.

Also, was ATG ever discussed? I don't remember reading that. If it was not used, what was the reasoning for not going that way? Anyway, thanks for your comments, and thanks for your blog. It is very interesting to me.

David M

Robi1Knobi

Thu May 27, 2010, 04:39 PM

My story is the same as yours...I went into have my daughter in 2001, and the cbc before I was to deliver was very low, hgb was 6, platelets 60K. I got epo for 3 months but it didn't help, then was followed by several different hematologists and had many bone marrow biopsies. My lab results all said hypocellular bone marrow or pancytopenia, until getting diagnosed with mild AA with TERC mutation in 2007. In 2009, it progressed to moderate, and I have had 2 blood transfusions. I am currently under Dr. Neal Youngs care, but am not a candidate for transplant, because of the TERC. If you want to talk or need support, feel free to message me. Sincerely, Linda

Laura

Thu May 27, 2010, 06:37 PM

Linda I am just wondering why you are not a candidate for transplant because of the TERC?

Laura

David M

Mon May 31, 2010, 11:25 PM

Robi1Knobi

Fri Jul 2, 2010, 03:10 PM

Linda I am just wondering why you are not a candidate for transplant because of the TERC?

Hi Laura, the reason I'm unfortunately not a candidate for transplant is, because I am at risk for liver cirrhosis and pulmonary fibrosis (which I'm showing early signs of) due to TERC. Thanks for asking....

m mindas

Fri Jul 2, 2010, 07:44 PM

Hi, David.
I thought I would share my story with you as I am currently without a sound diagnosis as well. I was initially diagnosed with low grade MDS at a local hospital, then switched to AA at a cancer center due to low cellularity. I was treated with ATG (horse) and cyclosporine. It hasn't worked and it has been 4 an a half months and all of my counts continue to be low-WBC 1.9, Hemoglobin-9 (varies)and platelets will drop to below 10 without transfusions. I also have a PNH clone size of 39% and have been taking Soliris since May. I went to see another specialist in New York's Sloan Kettering Memorial Hospital and he said that there are no chromosomal abnormalities or overt dysplasia to clinch the MDS diagnosis and it is not AA because I am no longer hypocellular. My diagnosis is "Acquired Bone Marrow Failure". They feel that there is a lot of "overlap issues" with AA & MDS and it really doesn't matter what you call it--we are just not making blood cells and our marrow is not working. I am soon to be scheduled for a bone marrow/stem cell transplant in the upcoming months from an unrelated donor. I have found peace with this plan because I want a cure and am tired of transfusions. I hope you get the answers you seek and your counts rise as mysteriously as they went down. Just thought you would like to know that you aren't the only one in the world with this diagnosis issue.

m mindas

Fri Jul 2, 2010, 07:47 PM

Linda I am just wondering why you are not a candidate for transplant because of the TERC?

Laura

Linda--Why haven't you had ATG treatment?

CDChilds

Sun Jul 4, 2010, 08:58 PM

Hello David M.

My son also has slow moving AA. He was diagnosed with pancytopenia when he was 3 years old in 2002. It was watch and wait for us as well until his counts continued to decline over the years. He has completed two rounds of ATG, one horse in 2006 and ATG rabbit in 2008. He has had a total of about 6 transfusions during this time frame. His current blood counts are HGB 6.4, WBC 2.4, PLT 32K and his ANC 888. He is scheduled for a bone marrow biopsy & asperation on July 8th at Cooks Children Hospital, Ft. Worth.

A BMT is still up in the air. My son does not have a sibling match and the MUD we have found lives in Europe. His doctors are still not convinced that a BMT is the way to go. We have also seen Dr. Neil Young at NIH and he also states that he didnt think Gage was ready for a BMT. I'm just not sure what that turning point is.

As it turns out the ultimate deciding factor lies with my husband and myself. We are terrified that we may make a wrongh decission. My son Gage is almost 13 and still very young.

I wish you the very best in your journey and my prayers will be with you.

David M

Thu Sep 15, 2011, 08:41 PM

Well, I just wanted to check in and report where I am in my "struggle" with this Pancytopenia, or whatever we wish to call it...

Back in September of 2009, I wrote my initial entry in "My Story." It has been right at 2 years since then, and happily, nothing seems to have changed! Things haven't gotten any worse -- but sadly -- they haven't gotten any better either. My platelets have remained at ~40K (recorded as low as 34K), hgb has actually gone up to ~11 (at times), and I feel pretty good. Red cell and white cell counts are in the same neighborhood as 2 years ago as well. I am not bruising or bleeding, and I am not taking any medication (aside from an iron supplement). Also, no transfusions to this point! Trying to guzzle water like never before, and I'm eating better, but still eating my share of junk too... still need to improve in this area!

So, I am "watching and waiting." I go in every 3 months to get checked, and each time I wonder if THIS will be the time when things start to change -- for good or for ill. So far, each time it is the same story -- no change! Some people say the glass is half-empty, and other people say the glass is half-full -- but I'm just thankful to have a glass at all at this point! I am thankful for each new day! I feel good, and have even been able to exercise quite a bit. Kind of a strange existence -- kind of like living on the edge of a cliff -- but on the GOOD edge!

I do not have a clue as to what is going on in my blood. I still wonder "why" at times... Why are my counts low? Why have they trended downward over the last 11 years? Why have they been stable for the last 2 years? Why haven't they improved? Why doesn't anybody seem to have answers about my particular situation? Why? WHY? WHY?????

So, on the one hand, I struggle to try and make sense of it all. And on the other hand, I thank God for each new day. And on the other hand (wait, that is 3 hands, right?), I try not to worry -- but to just leave it in God's capable hand -- I guess that is the 3rd Hand. Perhaps some day, my counts will crash like Maggie's did (see posts by Magpie75)... and at that point I will adjust to whatever that means. But for now, things are pretty good.

Just wanted to check in! Until next time...

lindy

Thu Sep 15, 2011, 11:48 PM

Hi David, thanks for the update.

Can understand this waiting & watching phase.
I am also in this mode for the past 2 years.
I see the hematologist once every 3 months for my CBC.
Of course I count myself lucky compare to many others here.
My last visit was last week & my platelet count plunged to 50 (my 'normal' is 100). Doctor said I have an enlarged lymph node on the right side of my neck.
I also had low grade fever for 2 days. Hopefully my platelet count will rebound if its just a viral infection. I have to see the doctor again next week.

Wishing your counts will remain stable for many more years.

Lindy.

akita

Sun Nov 13, 2011, 12:54 PM

Hi David,

as far i have understood you have got a pancytopenia in all three blood-rows.
Also you don`t have chromosomal changes.

You have checked your Vitamin B12 counts two years ago. Supposedly they were in the range.

If your situation is comparable to this of 12 patients reported in a recent korean study, you could have a 26,66 % chance that your blood problems origin from Vitamin B12 deficiency and will significantly improve after administration of parenteral (i.m.) injections of Vitamin B12 1000ng for seven days, within 14 days.

The patients of the korean study who were sucessful with the vitamin B12 supplementation partly had normal vitamin B12 counts in the beginning of the therapy, which worsened later. Furthermore half of the 12 patients always stayed in the normal range!

As the patients did not have a diagnosis for pernicious anemia, the traditional reason to do a therapy with vitamin B12, in this studyVitamin B12 was administered "to confirm the diagnosis and improve the clinical condition of the patient".

(Vitamin B12 (in the form of cyanocobalamin) is - in Europe - free available in the pharmacy. Also oral intake is useful, and a study has proved that 120 days intake of Vitamin B12 - tablets 2000ng /day give the same resultat as the standard injection - procedure). The whole Vitamin B12-problem seems to be very complex, but regarding hematological changes caused by Vitamin B12 - or - which are "Vitamin B12 - responsive" the supplementation is said to be successfull in more than 90 percent.

I will post the recent study in the MDS-Forum, as both, AA and MDS (and AML etc) could probably get confused with Vitamin B12 deficiency.

Good luck!
Kind regards, Margarete

Chirley

Sun Nov 13, 2011, 06:25 PM

Hi Margarete.

I read an article some time ago which stated that copper deficiency symptoms with concurrent Vitamin B12 deficiency or prior B12 deficiency are less likely to respond to replacement therapy. It went on to say that people with copper deficiency are more likely to have or had B12 deficiency.

It's becoming more apparent that micronutrients are important in maintaining optimal health.

Regards

akita

Mon Nov 14, 2011, 02:22 AM

Hi Chirley,

thank you, this is interesting. I you have got some more indicators how i can find the article again which you mentioned, this would be helpful. But i could search for it by myself later on the day or tomorrow. In practice you will try to do a supplementation, and if it works, it is ok. If not - more reflection is indicated probably leading to a solution (why this copper-VitB12 connection?)

Have you collected any other articles/studies regarding this topic? I have already some, but not many.

Kind regards,

Margarete

Cheryl P

Mon Jan 30, 2012, 05:25 PM

I am a 43 year old, athletic mother, like many of you, who has rarely ever been sick. But I want to mention one "unusual" thing, that is that I stopped menstruating December 2008, one month after my 40th birthday. Not sure if this means anything or not.
In 2007, I went in for a routine physical, and my doctor stated that my wbc were low (3.8, red cells are fine around 4.3, plateletes around 150.) Since then, I have been tested for everything and so far it's been negative. I have been monitored by a hematologist who diagnosed me a few years ago with aplastic anemia after a biopsy. (All the numbers took a drastic plunge that day, but 5 days later were back up)
My wbc count is usually between 3.4-2.4, and plt about 150-140, red cells are always fine.
I went to Barnes in St. Louis, and my white cells actually went to the normal range 4.2- first time in several years. Barnes thought that it might have been a lab error with the previous bloodwork because all the numbers went back up so quickly. They looked at slides of the biopsy I had done and said everything looked ok. I went back home and continued to monitor my white cells every 3 months.
For about 8 months they went and stayed in the 5.1 range, platelets around 155 and so I thought everything was fine, and my hematologist was left scratching his head.
Then June 2011 after bloodwork, they began to fall to 3.94, then in September 2.67, and platelets to 125, red cells at 4.51. The hematologist suggested I speak to a bone marrow transplant doctor at Barnes, so I again went back to St. Louis.
The bmt doc said it would be 'medical malpractice' to even think about a transplant at this point and he wasn't sure what to think because I am not sick. So a month later, I had 2 bone marrow biopsies at Barnes and my white cells went up to 4.3 again, and red cells to 141. He said that it appears there has been some injury to my marrow and that it is "cyclical". He told me to go live my life because I am healthy. But when I asked him what he thought it was, he said "aplastic anemia, but not now".
My pathology report says this and I was wondering if anyone would please give me their opinion about this:
Examination of the right and left bone marrow biopsies and aspirate shows hypocellular marrow (cariable <10% to upto 20-30%) with normal maturation in all cell lineages. No overt dysplasia, excess blasts or features of a specific infectious etiology are seen. The histopathologic features may favor aplastic anemia if other secondary causes of bone marrow suppressionn are excluded and cytogentic/FISH studies are normal. Compared to a previous bone marrow study from July 2010, the overall cellularity has marginally improved from 15% previously to upto 30% in current study, however significant core length shows <10% cellularity on the right side. Flow cytometry shows no excess blasts.
Thank you, and thank you for this website! I am a little lost and overwhelmed waiting for the other shoe to drop and wondering when it will.

David M

Sat Aug 4, 2012, 09:01 AM

Well, I haven't posted in a while, so I thought I'd give a quick update of the status of my pancytopenia / AA / whatever. Things are basically the same with me. Platelets have slowly dropped to the low 30K range (at least in the last 3 CBCs over ~3-4 months). HGB is generally ~10. RBC is around 2.8, and WBC is also in that same area.

I am still feeling good, with good energy (able to exercise quite a bit). I have not been bruising abnormally, have not been bleeding, and I have not been getting frequent infections. So, although overall, things counts-wise have gotten a tad worse in the last year, things seem to be going pretty good otherwise. I am taking only iron, Vitamin D, Vitamin B-complex supplements. So at this point, I have not had any real "treatment" or transfusions -- we are still in the "watch and wait" mode... which is fine with me.

I realize that this pancytopenia problem is something that I can't control, but there are some things I can do that I think may be helpful. For example:
(1) I am trying to drink more water than ever. Water is so important to our bodies, and especially to our blood production -- and most of us do not get nearly enough water. So, drinking more water is something easy I can do that will not hurt me!
(2) I am trying to get in as good of shape as I can by exercising -- vigorously and often! I know many of us do not feel like doing much exercise... low HGB will certainly make this difficult at times. But I was told "you can do as much as you feel like doing" -- so, I am pushing myself to do what I can. I have surprised myself in what I can still do! My endurance seems to be less, and I feel more wiped out at times than I should -- but overall, exercise seems to be helpful.
(3) I have tried to have a positive attitude about this whole thing. I have learned to enjoy each precious day of life, since I know this all can change very quickly! My pancytopenia problem has been going on now for over 12 years -- and it doesn't show any signs of going away in my case! If nothing else, I have learned some patience as I am participating in this "slow motion train wreck." Going around moping and complaining is not helpful to myself or to anyone. I've tried to be thankful, instead of griping. Attitude is something that we CAN control. (There is much more I could say here about having a positive attitude, and I would be happy to discuss it with any of you.)
(4) Although I do not go around complaining about my lot in life, I have developed a support network of people who care about my condition. I have asked them to pray for me, and I keep them posted periodically on my condition. This has also helped greatly with my peace of mind.
(5) I have tried to stay informed by monitoring (and occasionally posting to) MarrowForums and reading other related sources. Denying reality is not helpful. The fact is -- I have a rare bone marrow failure problem. It is helpful to be armed with as much information as is reasonably possible as I face the future.

Well, these are some things that I have done that have been helpful. I am still curious about others out there who have had this form of slow (or very slow) moving pancytopenia. I'd love to hear your stories!

Sally C

Sat Aug 4, 2012, 09:54 AM

Hi David,
If having a good, positive attitude helps fight these bone marrow diseases, you certainly have that going for you.
Great advice and a wonderful outlook on life for all of us.
I wish you the best!
God Bless,
Sally

David M

Wed May 22, 2013, 02:08 PM

All,

I haven't updated in a while... so here is an update! :)

All in all, things with me are about the same. Pancytopenia is still in effect, with platelets now down in the mid-30K range. RBC hovers around 2.98-3.0, and WBC is also in the 2.9 - 3.2 range. HGB is in the 10.0 - 11.5 range. Neutrophils are hovering around 1.5.

So, all in all, things are going pretty good. Still no abnormal bleeding, not getting frequent infections, and not bruising abnormally. Also, my energy level is pretty good. I am very thankful, and I hope this lasts -- or improves!

To give you an idea of how slowly my counts are dropping, see the numbers below for my platelet counts. BTW, I am currently 49 years old...

===================
Platelets:
===================
Pre-1999: 179.8 (5 samples)
2000: 121.1 (11 samples)
2001: 99.5 (4 samples)
2002: 93.0 (3 samples)
2003: 82.5 (4 samples)
2004: 85.7 (3 samples)
2005: 67.0 (2 samples)
2006: 65.7 (3 samples)
2007: 58.0 (2 samples)
2008: 54.0 (2 samples)
2009: 44.5 (6 samples)
2010: 39.6 (5 samples)
2011: 45.1 (6 samples)
2012: 35.5 (4 samples)
2013: 37 (2 samples so far)

Definitely a slow downward trend. I have similar (but not as dramatic) drops over this time period in RBC and WBC.

Anybody out there have similar symptoms? I'd love to hear from you...

Barbara K

Sun May 26, 2013, 03:09 PM

Hi, David. This is my first post here. My husband was diagnosed last February (after a couple of months of testing) with early/mild aplastic anemia, as well as monoclonal gammopathy of undetermined significance (also very mild) and iron deficiency anemia. Initially it seemed that his counts were dropping at each visit, but mostly things seem to be stable. His RBC count went back up to the very bottom of normal once he started iron but never gets any higher than about 4.3 or so, his platelets tend to range from 120-135ish, and his WBC averages around 2.4, with ANC around 1.2 (lowest counts were 2.0 and .9, respectively). His one BMB showed about 25% cellularity but no clear dysplasia. (There were a few things noted like hypolobulation?--but it was referenced as "rare" or "occasional.") Sometimes his blood tests show reactive lymphocytes, toxic granulation, and large platelets. One time he showed a nucleated RBC. At the most recent test, he did not show monoclonal gammopathy but did show hypogammaglobulenemia. They checked for nutritional deficiencies but the only thing that turned up was the low iron. He's on watch and wait.

So I guess we are several years out from knowing if his story will or won't turn out to be kind of like yours. Good luck to you and everyone else fighting these blood disorders.

lindy

Fri Dec 13, 2013, 11:40 PM

David, seems you're hanging on well.
All the best.

David M

Sat Jun 28, 2014, 04:14 PM

Hello Again,

I just wanted to update "My Story" since it has been a little over a year since I checked in...

Things are really about the same for me. I still have pancytopenia... I just had a couple of CBCs in the last couple of months. Here is a summary of my past 2 CBCs (just to give a flavor of where I am):

==========
4/3/2014:
==========
RBC - 2.95
WBC - 2.64
Lymph # - 0.99
Lymph % - 37.5
Neut. # - 1.18
Neut. % - 44.6
HGB - 10.4
HCT - 30.9
Platelets - 36

============
6/24/2014:
============
RBC - 3.02
WBC - 3.9
Lymph # - 1.17
Lymph % - 29.9
Neut. # - 1.98
Neut. % - 50.6
HGB - 10.6
Platelets - 51

For the last couple of years, my platelets have been hovering in the 35K range... I know platelet counts tend to bounce around some, so I am not getting too excited about the reading of 51K on 6/24/14 -- although it would be nice if that were the beginning of an upward trend! :)

Still not having much abnormal bruising or bleeding... have not had frequent infections (no more than usual anyway)... and I have reasonable energy -- although I seem to tire out pretty quickly. I just take a break, then get back up and press on... I am not taking any medicines for this or undergoing treatment of any kind at present -- no transfusions to this point. For now, still in "watch and wait" mode.

I would love to hear from any of you out there who have (or have had) a similar slow-moving pancytopenia situation. I think there are several of "us" out there. I'd love to hear from you!

Until next time...
David M

bailie

Sat Jun 28, 2014, 04:39 PM

"Slow motion" must be a phrase that you cherish. My numbers (red, whites and platelets) took all of six months to deteriorate.

Whizbang

Sun Jun 29, 2014, 11:12 AM

David M,

Great to hear that your numbers are looking better and on an upward trend...

May it continue ad infinitum...

All the best and May God Bless!!!

David V.

David M

Tue Aug 25, 2015, 11:40 PM

Hello All,

I have not updated in quite a while, so I'll update "My Story"... The short version is -- not much has changed. I still have pancytopenia... my blood counts are about where they were last year at this time. In fact, I seem to have been in a plateaued state for quite a while now -- which is a good thing.

Here are the totals from my last 3 CBCs (10/7/14, 4/7/15, 6/23/15):
RBC: 2.87...2.63...2.8
WBC: 3.7...3.6...3.7
Lymph #: 1.4...1.6...2.32
Lymph %: 38...45.5...28
Neut #: 1.9...1.5...2.13
Neut %: 51.6...42.3...62
Hgb: 10.3...9.7...10.0
HCT: 30.6...27.6...Not avail
Platelet: 46...48...47

Also, on 10/14/15, my hematologist sent some of my blood to GenOptix Medical Laboratory for a Myeloid Molecular Profile (i.e. Janus Kinase 2 [JAK2] V617F Gene Mutation Assay). The results as stated were: "Pathogenic mutations are NOT DETECTED." And also: "No known pathogenic mutations are detected in the genes tested." I do not pretend to understand all of what is in that report... I could list the various areas that were tested (e.g. RNA Splicing, Epigenetic, Tumor Suppressor, Transcription Factors, Activated Signaling), the gene, exons tested, etc. For each test performed, NO mutations were detected. I may not understand all of this, but I know that is good news!

In the last year or so, I have gotten sick with colds several times, the flu, and other little "ailments" -- maybe a little more than usual. I am not bruising much, and I have not had any bleeding issues. My energy has been pretty reasonable with HGB hovering around 10.0. So, I am very thankful that this pancytopenia is so very slow-moving.

I am still trying to drink a lot of water, exercising as much and as intensely as I feel like I can, and continuing to trust in God in prayer -- and in asking others to pray for me. I am thankful to God for the measure of health that I have.

I am also thankful for MarrowForums. I have learned a lot from visiting here from time to time. I would love to "talk" with any of you who have similar symptoms, or if you just want to talk about what is going on with you. May God bless you all!

David M

Cheryl C

Wed Aug 26, 2015, 06:23 AM

I'm in a stable state too David, and not on any treatment apart from the IgG infusions 4-weekly. I thank God every day I wake up well after being so unwell 4 years ago. We're fortunate people! I've decided just to live as though I'm a well person while like you, monitoring my results so I know how I'm going. :)

edithr

Sun Aug 30, 2015, 06:55 PM

David - thank you for thinking of us and keeping us updated. I'm not sure of my tone will come through in this post, but BORING is UNDERRATED! Love, love, love that nothing seems to change for you. I mean that in a good way. :)

Do they do bone marrow biopsies on you? Who determines how often you should go for bloodwork? Have you considered that this just might be your normal?

David M

Mon Aug 31, 2015, 10:12 AM

edithr,

You are so right! In this case, BORING is GREAT!

The last bone marrow biopsy I had was in June of 2009... I have had 3 of them through the years (I had to be sedated for the last two since my bones are apparently hard as rocks!)...

I go in about 3-4 times per year for CBCs. I have a local hematologist who I see twice per year, and I go once per year to a doctor at Vanderbilt for a second opinion on my situation. Sometimes my GP will also do a CBC if the situation calls for it. My visits with these doctors have been mostly "boring" as you say... again, that is a GOOD thing.

Is this my "normal"? Good question... but I don't think so. I have recorded my CBC results in a spreadsheet dating from 2000 (when we first noticed I had a problem). I also had a few of my CBC results I rounded up from other doctors from the early-mid 1990s... if you look at my blood counts over the years, there is a definite gradual downward trend -- most noticeable in the platelets -- but in reds and whites as well. Since 2009, my counts have been reasonably stable... but all still low.

So, maybe things have stabilized at this level? I don't know... I guess there is no way to know except to keep an eye on it -- to "watch and wait." :)

KatailS

Tue Apr 12, 2016, 08:33 AM

Hi David
This is my very first post to this forum :)
I am on a very similar journey as you are..... only mine has begun much more recently. In November 2014 my routine blood work came back all out of whack. My primary care physician called me the very same day and requested I get retested (to rule out lab error). The repeat tests came back worse (not surprising as they pulled another 4 tubes out of my arm within a 24 hour period!). My CBC showed:
RBC 2.87, WBC 2.6 (with low neuts and lymphs), hemoglobin 10.4, crit 32.1, MCV 112, MCH 36.2, platelets 104
I was otherwise in the best health of my life, having spent the previous two years working out and eating right. As far as I know, my previous blood work (a couple years prior) was 'normal'. My doctor repeated the CBC, chems and added several more tests over the next 3 months but no change and no smoking gun. She was stumped and referred me to a hematologist who then ran a bunch of tests as well. Since then I have done repeat CBC's, blood chems, and bone marrow biopsy and study of the peripheral blood (flow cytometry) which showed a small, 1.3% erythrocyte and 1.3% granulocyte PNH clone. My LDH and haptoglobin remain normal. My doctor has checked my ferritin, serum folate, B12, vitamin D, TSH, reticulocyte, iron binding capacity, hepatitis, immunoglobulin A, M, and G, ANA, globulin, ..... all came back within the normal range.
The findings have not given any real answers. My platelets have fluctuated between 90-68 while all the other values have remained in the same relative ballpark.
My hematologist put me on iron, B12, and D.... and told me to stop drinking alcohol (yes, I miss my wine). I get my blood tested every 3 months (every 6 months for the PNH) and each time hope for better results. I have done everything my doctors have instructed yet my numbers remain as they are.
I came across your post last night and I admit it was somewhat comforting to read your story and to know I am not the only one. I am trying hard not to let this control my ongoing life, but sometimes find it hard because no one around me understands. I feel like a ticking time bomb.... and it frustrates me because I am the type of person who likes to "fix" things. I am open to any and all advice as I am a proactive person.
I appreciate having a place to share, to learn, to feel like I am not alone.
Kathie

Sally C

Tue Apr 12, 2016, 10:47 AM

Hi KaitalS,
My husband started transfusions 4 months before he was able to get a diagnosis in 2009. It took a trip to The National Institutes of Health in Bethesda, Md. to finally find out he had MDS - they are the best. The experts in Richmond, Va. (and I mean that sincerely) just couldn't diagnosis. You may want to consider trying to get accepted there. They saved my husband's life - he has been in remission going on 5 years now after over 125 blood/platelet transfusions.
I wish you the best!
Sally

KatailS

Tue Apr 12, 2016, 11:19 AM

Thanks for replying, Sally
I am not sure how long to just "wait and see" because for the most part I feel okay.... just not as strong as I used to feel and sometimes more tired and dizzy.... never knowing if any time I don't feel well is because something is lurking or if I am just fighting a small bug, .... or if I am ultra sensitive and behaving like a hypochondriac.
What I can't seem to understand is how my numbers can be off for almost a year and a half yet no one can tell me why. I don't want to just accept that this is my new normal, I want to do something to maintain a healthy body for as many years as I can. And I miss my wine.
I have an appointment with my hematologist on Thursday and am thinking of asking for a referral just to be sure there isn't anything more I should be doing. I don't want to wait and ignore these numbers and, worse case scenario, get sicker to then find out there was something less invasive I should've been doing sooner. Anyone else understand that?

KatailS

Tue Apr 12, 2016, 01:45 PM

Hi KaitalS,
My husband started transfusions 4 months before he was able to get a diagnosis in 2009. It took a trip to The National Institutes of Health in Bethesda, Md. to finally find out he had MDS - they are the best. The experts in Richmond, Va. (and I mean that sincerely) just couldn't diagnosis. You may want to consider trying to get accepted there. They saved my husband's life - he has been in remission going on 4 years now after over 125 blood/platelet transfusions.
I wish you the best!
Sally

So glad to hear your husband is doing so well and in remission!

David M

Tue Apr 12, 2016, 02:31 PM

Hi Kathie,

Thanks so much for your post! No, you are not alone... there are several of "us" out here battling this -- all with different stories and situations. I have learned a lot from this forum, although it seems not a great number of people have my exact situation (i.e. slow-moving pancytopenia).

When I had my bone marrow biopsies (the last one in June 2009), I was told I had a bone marrow cellularity of between 15-20%. They described me as being "hypo-plastic" or "hypo-cellular" -- in other words, I had less than the expected number of blood-making cells in the marrow for someone my age. The formula for calculating the expected cellularity is "100 minus your age", so for someone my age (currently 52), I ought to have a cellularity of 100-52 = 48% cellularity! But instead, I have ~15% to 20%.

Did they tell you what your cellularity was after your bone-marrow biopsy?

I am supposed to go back to the hematologist later this week, so maybe I can post an update for the year then... but for the most part, things with me have remained about the same in the last year.

David M

KatailS

Tue Apr 12, 2016, 05:06 PM

The formula for calculating the expected cellularity is "100 minus your age", so for someone my age (currently 52), I ought to have a cellularity of 100-52 = 48% cellularity! But instead, I have ~15% to 20%.

Did they tell you what your cellularity was after your bone-marrow biopsy?

David M

Hi David
I really appreciate reading about the different journeys and experiences.... it is helping me to wrap my head around many scenarios. Your experience has helped me to settle down a bit and not be as fearful by having no immediate answers.
I hope all goes well at your next visit :)
The biopsy report did not use the term "cellularity", but it did say "there are 46% myeloid elements which are well-represented and mature in an orderly fashion". It goes on to say "there are 24% erythroid elements which are megaloblastic and display an expected spectrum of maturation" and "iron stores are markedly decreased to absent"
Another point made is that the "megakaryocytes are normal in number and distribution; they are not as prevalent as one would expect to compensate for the low peripheral count"

No obvious red flags, no definitive causes. But I guess I am pretty "new" to this as well ;-)

David M

Tue Apr 12, 2016, 05:31 PM

Well, I guess I am not educated enough at this point to know exactly what all that means. (ha) But there are people on this forum who I know can "interpret" that information. (If no one responds to this post with an explanation, you might post a question to one of the forums and I'm sure someone would explain all of that.)

The good news is, it sounds like things are stable for you at the moment. This gives you a good opportunity to learn about Bone Marrow Failure in its various forms (if you wish) and to think about options going forward. Some people's counts crash overnight and they don't have the luxury of time. Things like finding a good doctor (or doctors) is an important thing to do. Most doctors have little or no experience with this sort of thing -- although they may not volunteer to send you on to a specialist that DOES have experience with it (you may have to take the initiative in this case and find your own specialist/facility you are comfortable with). This is a good time to do that kind of thing.

There are a few of us on the forum that have had many years of "watching and waiting." I wish I didn't have this blood problem -- it is always in the back of my mind -- but I will say that it has helped me appreciate and value life more. Each day truly is a gift!

Feel free to contact me anytime you would like to compare notes, concerns, stories, etc., and I'll tell you what I know... which may not be much. But at least it is good to have someone to talk to who is going thru something similar!

KatailS

Tue Apr 12, 2016, 06:10 PM

Thank you David :-)
Yes, every day IS a gift.... and I am learning not to waste any days.

I am certainly open to advice or snippets of knowledge that anyone may care to share. And I will be sure to spend this time to learn as much as I can AND to find doctors I am comfortable with..... just in case. Good advice that I plan to follow.

Wishing you a good visit with your hematologist later this week.... looking forward to a positive report!

David M

Wed Jun 29, 2016, 04:57 PM

Hello All,

Well, it is time for a yearly update of "My Story"... Not a lot has has changed in the last year. That is the good news! The bad news also is, not a lot has changed in the last year -- so I still have unexplained pancytopenia.

Here are the totals from my last 3 CBCs (10/14/15, 4/14/16, 6/28/16):
RBC: 2.61...2.81...2.84
WBC: 3.6...4.2...3.2
Lymph #: 1.8...1.7...1.24
Lymph %: 51...39.9...38.3
Neut #: 1.4...1.76...1.44
Neut %: 39.8...41.5...44.4
Hgb: 9.1...10.3...10.3
HCT: 27.7...30.4...Not avail
Platelet: 53...40...44

I have had pretty good energy in the last year -- done some reasonably regular and intense exercise (taking a break recently -- I need to get back on that!). Haven't been sick a lot (a few times -- colds, stomach bugs, and such). Haven't been bleeding or bruising excessively. No swelling in lower legs (well, not much anyway). Still doing the "watch and wait" thing -- not on any meds or treatments at this point, and still not doing any transfusions, etc. Thank God!

My counts started decreasing slowly in 2000 (at least that is when we noticed that they were low), and they continued to slowly decrease until June 2009. Since July 2009, my counts have been "amazingly stable" (as my hematologist at Vanderbilt said yesterday).

I am still trying to drink a lot of water -- more than I ever have in my life. This is something simple that anyone can do, and I think the benefits are numerous. A large percentage of our bodies (and of course, our blood) is made up of water -- so it makes sense to be well-hydrated!

I am thankful for each day of "good health" that God gives me -- I realize this could change at any moment. I do feel sort of "draggy" at times and tired, but I am never sure if that is the low-blood talking or just the way a 52-year old feels. I also feel a little "foggy brained" at times and have a little trouble concentrating -- but maybe this too is normal for a 52 year old? (I don't know, I have never been 52 years old before.)

Thanks for all the great support and info on MarrowForums! It has really helped me to keep some semblance of sanity in dealing with this Pancytopenia / Bone Marrow Failure situation.

David M

Cheryl C

Fri Jul 1, 2016, 04:49 AM

Hi David - I'm another stable, 'watch and wait' forum member. After 6 years with chronic idiopathic neutropenia followed by nearly 5 years since my MDS diagnosis, I can agree that it's possible to live a very normal life with lowish blood counts.

Yesterday I hiked 12 km with my son and grandson. Because things can change so suddenly with MDS, whenever I get that kind of opportunity I think, "Maybe this is the last time I'll be able to do this," so I go ahead, even though I know I'll be tired afterwards. How fortunate I am! Like you, I thank God every day that I wake up feeling well.

KatailS

Fri Jul 1, 2016, 10:31 AM

Hi David
I admit, I was anxiously awaiting your update to see how you have been doing. I feel as if I can identify with you and your story the most .... and I am glad things are stable and no worse. That is good news! You also have such a great attitude and I find it very inspiring. The are so few people who can truly understand what it is like to have something 'off' and not have an explanation. Being able to rise above it and live life as fully as possible is a gift... you set a very good example.
Keep doing what you are doing....
Wishing you the best :D

David M

Fri Jul 1, 2016, 02:24 PM

Thanks, KatailS, for your nice comments!

I'd be lying if I said I didn't think about my blood condition quite a bit, but I try hard not to let it get me down too much. There are a lot of people out there sicker than I am! I just try to be thankful for the health I do have, and to do the things I know to do that will not hurt but that are positives.

Prayer has been so important as well -- my own prayers, but also the prayers of others who are lifting me up in their prayers.

Thanks again, and if I can ever help, let me know!

David M

KatailS

Fri Jul 1, 2016, 10:53 PM

I'd be lying if I said I didn't think about my blood condition quite a bit, but I try hard not to let it get me down too much. There are a lot of people out there sicker than I am! I just try to be thankful for the health I do have, and to do the things I know to do that will not hurt but that are positives.
David M

I am relieved to hear you say that you think about your blood condition.... even tho you seem so positive and in control. I do as well, not obsessively, but I am still trying to wrap my head around it as best I can while balancing concern, education about is going on inside me and living.... somedays are easier than others.... and it sure makes it easier to know that there are others who are going through similar issues..... and coping and living.... and even feeling "down" on occasion
And BOY do I hear you on the foggy brain part! It drives me NUTS!!!
Do you mind me asking what your MCV and MCH are?

Keep staying positive and keep praying .... and keep living fully :)

David M

Sat Jul 2, 2016, 12:14 PM

I don't mind sharing the MCV and MCH values at all... Honestly, I need to be smarter about all of this! I don't know much about what these mean in the grand scheme of CBCs... but here goes:

MCV: As of 6/28/16, it was 110 fL (normal: 81-98). I went back and looked on some of my oldest CBC reports from years ago. Looks like in the older reports (10-15 years ago), my readings were usually between 98-105. In the last 5 years, it looks like it has stayed in the 105-109 range. Is this slight shift upward significant?

MCH: As of 6/28/16, it was 36.3 pg (normal: 27.0-32.0). In my records, this is the highest reading I've ever had. It usually was between 31-34 in the older reports, and has been 34-36 in the more recent reports. Again, is this gradual shift upward noteworthy?

How does this compare to your MCV and MCH?

So, do you think the "foggy brain" thing is directly caused by having low hemoglobin, etc.? It is hard for me to really put my finger on it. I just know that at times, it is necessary for me to try to learn new things (i.e. on my job), and it seems extra hard to concentrate, focus, and learn -- it is not impossible for me, it just takes much longer than it used to. You are the same age as me -- but you also have low blood counts! So, is it the age, or is it the "fog"? I just don't know. With a HGB of 9-10, is that low enough to induce "brain fog"?

David M

bailie

Sat Jul 2, 2016, 12:20 PM

You can include me into the "brain fog" group. I just mailed large envelope to my daughter (w/ extra stamps) and forgot to put the contents into the envelope.

KatailS

Sun Jul 3, 2016, 12:21 AM

MCV: As of 6/28/16, it was 110 fL (normal: 81-98). I went back and looked on some of my oldest CBC reports from years ago. Looks like in the older reports (10-15 years ago), my readings were usually between 98-105. In the last 5 years, it looks like it has stayed in the 105-109 range. Is this slight shift upward significant?

MCH: As of 6/28/16, it was 36.3 pg (normal: 27.0-32.0). In my records, this is the highest reading I've ever had. It usually was between 31-34 in the older reports, and has been 34-36 in the more recent reports. Again, is this gradual shift upward noteworthy?

How does this compare to your MCV and MCH?

So, do you think the "foggy brain" thing is directly caused by having low hemoglobin, etc.? It is hard for me to really put my finger on it. I just know that at times, it is necessary for me to try to learn new things (i.e. on my job), and it seems extra hard to concentrate, focus, and learn -- it is not impossible for me, it just takes much longer than it used to. You are the same age as me -- but you also have low blood counts! So, is it the age, or is it the "fog"? I just don't know. With a HGB of 9-10, is that low enough to induce "brain fog"?

David M

Hi David
Looks like we are in much the same boat there too.... most recent MCV (size of the red blood cell) is 109.2 and the MCH (amount of hemoglobin within each red blood cell) is also higher at 36.5 .... guessing our red cells are trying to compensate for the lack of numbers by being larger? These numbers are calculations so maybe it really doesn't mean much in the big scheme of things....

Are you also on iron and B12 supplements?

The "brain fog" really annoys me. I am willing to blame some of it on age, but I refuse to believe it is all age-related. I am a young 52.... and until this all started I was in excellent shape and health. I do think my pancytopenia is the main cause (or rather whatever is causing my pancytopenia is the main cause)..... I do think it is very telling that you, bailie and I all notice this "fog"....

This might sound like a weird question.... do you ever get the feeling that when you take a deep breath you can't actually fill your lungs all the way? Everyone thinks I am thinking too hard about and that I am going to hyperventilate. It doesn't happen often, but it does happen and it is not a mental thing. I just can't get the full, deep, satisfying breath for a while. I don't know how else to describe it....

Wishing you and your family a Happy 4th of July :)

KatailS

Sun Jul 3, 2016, 12:22 AM

You can include me into the "brain fog" group. I just mailed large envelope to my daughter (w/ extra stamps) and forgot to put the contents into the envelope.

:D Been there, done that!
Welcome to the Brain Fog Club, bailie!

David M

Sun Jul 3, 2016, 05:33 PM

Kathie,

I am currently taking some iron (65 mg daily)... not much, I guess. Also I am taking a Super-B Complex supplement -- it has 250 mg of B12 in it, among other things -- but this is something I just started doing on my own.

I haven't really experienced the "unable to take a deep breath" phenomenon you described. However, in the past (back in 1996) I had some lung issues... I had about a 6 month bout of an "autoimmune" type disease called sarcoidosis, and during this time, I would have coughing fits that seemed to go on forever -- also fevers, aches, swellings in ankles, etc. But this was an "acute" attack apparently, and in a few months it went away never to return. Unless, of course, it is now the cause of my pancytopenia somehow? Unlikely, but... who knows?

I wonder if having low hemoglobin -- or perhaps just knowing that you have low hemoglobin -- can cause that sensation of not being able to get enough oxygen? I just don't know. Maybe someone else on the Forum knows. :confused:

Keep in touch!

David M

Cheryl C

Tue Jul 5, 2016, 09:19 PM

I had brain fog when my blast count was higher. I found that making myself do brain games like Sudoku helped even if it didn't completely solve the problem. We need physical exercise so brain exercise makes sense too.

David M

Wed Jul 6, 2016, 10:03 AM

Another thing I have noticed...

For those who have "Mild" AA symptoms, what has been your experience with exercising? Personally, I have been able to exercise -- and still do quite a bit... BUT there are limits -- when I push myself a little too far, I hit a "wall" where I must stop.

When I hit this "wall," I feel like I am sinking into a hole -- like I am going to faint. I get weak and wobbly -- and a little nauseated. And it takes me quite a while to recover from this. I have to stop and sit down at this point. I have found that the "trick" is recognizing when I am getting close to this "wall" and stopping before I go too far. But I am not always able to do this.

I have also noticed that by regularly exercising and pushing myself to get in better shape, I have been able to push this "wall" a little further out so that I don't hit it nearly as soon as my endurance has improved.

I have played sports most of my life, and I have run wind sprints, worked out intensely, etc. through the years, and I do not remember this "wall" phenomenon until I started having blood problems.

Have any of you with MAA had similar experiences with exercise?

KatailS

Wed Jul 6, 2016, 03:22 PM

Meri T.

Thu Aug 18, 2016, 04:55 AM

David,
I read your whole over 10 year "saga", so impressed and so glad that you still keep on posting. It gives us newcomers (so new: pantycopenia as of a few days ago, still yet to learn how to spell the word) some perspective and a lot of hope. Please do keep on posting !!
Sorry to post this in the same breath, :
Kathie, or anyone, have you experienced excessive menstrual bleeding? It's freaking me out since now I know the reason is because my platelet levels are low 70; NOT as I had thought, due to menopause. Can I do anything to cope with this?
Any advice is welcome, thanks.
David, hang in there. I'm rooting for you.

David M

Thu Aug 18, 2016, 11:35 AM

Thanks for reading about my "saga." Actually, at this point, it is more like a 16-year saga! That's a lot of watching and waiting!

In 2009, when I wrote my original "My Story" post, I had been watching and waiting for about 9 years. However, it appeared to me things were trending downward at a slightly accelerated rate, and I was convinced that I was headed very soon toward some type of "treatment" -- whether it was transfusions, meds, or even ultimately a BMT. These things could still happen, of course, but since 2009, my counts have been amazingly stable. Still low, but stable.

Since then, I've kept an eye on it. I am very thankful for each new day.

Again, Meri T, thanks for reading my saga, and I hope it was helpful to you. I suggest for you to get better response to your question from the Forum, you may also want to post it in one of the other forums as well on this site, such as "Questions and Answers"... (probably more people would read it there). :)

KatailS

Thu Aug 18, 2016, 05:50 PM

Sorry to post this in the same breath, :
Kathie, or anyone, have you experienced excessive menstrual bleeding? It's freaking me out since now I know the reason is because my platelet levels are low 70; NOT as I had thought, due to menopause. Can I do anything to cope with this?

David, hang in there. I'm rooting for you.

Hi Meri and welcome.... so sorry to hear you are dealing with this....
Yes.... I will send you a message to share more details so we don't high jack David's thread with female issues (you are welcome David ;))

I am rooting for you too, David

David M

Mon Jul 17, 2017, 11:46 PM

Hello All,

Well, it is time once again for a yearly update. I am very thankful to report that once again, in the past year or so, very little has changed with my condition. Pancytopenia is still a reality for me, but as far as I can tell, it has gotten no better -- and no worse -- during this time.

Below are counts from my last 4 CBCs... (10/17/16, 4/17/17, 7/3/17, 7/17/17):
RBC: 2.83...2.61...2.67.... 2.71
WBC: 3.9...3.4...3.1... 3.4
Lymph #: 1.6...1.5...1.17.... 1.2
Lymph %: 42...45.3...37.6.... 36.7
Neut #: 1.48...1.18...1.27.... 1.40
Neut %: 38.1...34.9...40.9... 41.8
Hgb: 10.5...9.5...9.9.... 9.9
HCT: 30.5...29.1...Not avail... 29.8
Platelet: 56...42...42.... 41

I have had pretty good energy in the last year, and did some pretty regular exercise during much of this time. However, I have been feeling quicker to become out of breath and tire out -- and slower to recover from activities requiring strenuous effort. Overall, I'd say my fatigue factor has increased slightly during this time.

I have not been sick (any more than usual) during this time, and no abnormal bleeding or bruising. Still not on any medications for this condition -- thankfully! No transfusions or treatment needed to this point.

My hematologist at Vanderbilt (who is retiring in the next year) said on my 7/3/17 visit -- "Your counts are amazingly stable!" I guess I am something of an anomaly, but I know there are others out there with similar symptoms as I have. And we all know how these things can change -- and change quickly. So, we will continue to "watch and wait."

As I said above, I have felt a bit more fatigued in this past year, and I have also felt (or at least I think I have felt) a higher level of "brain fog" setting in -- although both these things are hard to pinpoint exactly. How do you quantify "fatigue" or "brain fog"? How do I know if I have more of this than "normal" for someone my age? Anyway, I THINK I am experiencing these things.

To sum up, I am very thankful for the very slow changes -- the apparent plateau -- that my counts seem to be on right now. Everyone is different, and we all have different battles related to our bone marrow. I am very thankful for this forum, although I don't comment that often. I am amazed at some of the stories on this forum -- the battles that many are going through. You all help me to be strong!

David M

P.S. -- One more thing... my hematologist at Vanderbilt (who is a bone marrow transplant specialist) commented that in the time I have been going to him (since June, 2009), transplant technology has improved significantly. He said age is not nearly as great of a factor as it was just a few years ago (now more about the current physical strength of the patient going into transplant), and they are now doing more and more transplants with un-matched related donors! Well, I don't know much about transplants, but his point was, transplant technology is marching on at a rapid pace!

Neil Cuadra

Tue Jul 18, 2017, 11:14 AM

As I said above, I have felt a bit more fatigued in this past year, and I have also felt (or at least I think I have felt) a higher level of "brain fog" setting in -- although both these things are hard to pinpoint exactly. How do you quantify "fatigue" or "brain fog"? How do I know if I have more of this than "normal" for someone my age? Anyway, I THINK I am experiencing these things.
While stubbornly low hemoglobin can cause both of these symptoms, so can normal aging. Perhaps it's the effect of being 17 years older than when your pancytopenia was first detected.

David M

Tue Jul 18, 2017, 01:44 PM

Neil, I had thought of that too. As weird as this sounds... at this very moment in time, I am the oldest I have ever been, so before now, I really didn't know how it feels to be THIS old! :)

I think many of us are tempted to blame every slightly odd thing that we feel or encounter health-wise on our blood problems.

David M

Tue Aug 7, 2018, 11:14 PM

Hello All,

It is time once again for a yearly update! This past year, things have continued on being pretty stable for me, but there are some hints of changes as well. Usually I sum it all up by saying, "Well, it's not any better, but it's not any worse either." This year, maybe it is slightly worse.

First of all, I believe since my 2017 update, both of my hematologists have retired -- the one in Huntsville, AL, and the one at Vanderbilt in Nashville. So, I am now breaking in two fresh doctors to my weird blood condition. So far, I am happy with both, although I miss the two seasoned doctors who have been with me in this ordeal for so many years.

Below are counts from my last 5 CBCs... (10/17/17, 2/6/18, 4/17/18, 7/10/18, 8/6/18):
RBC: 2.67...2.46...2.51.... 2.36..... 2.46
WBC: 3.4...3.1...3.6... 3.2.... 3.1
Lymph #: 1.6...1.6...1.5.... 1.06.... 1.3
Lymph %: 45.3...50.6...43.1.... 33.1... 43.3
Neut #: 1.21...0.98...1.32.... 1.37.... 1.01
Neut %: 35.4...31.4... 37.0... 42.6.... 33.0
Hgb: 9.9...9.4...9.3.... 8.6..... 9.0
HCT: 29.2...26.7... 27.8... 26.0.... 26.9
Platelet: 44...42...46.... 41.... 41

Late last year and early this year, it seemed like I was getting sick a bit more than usual. I got a "cold" of some sort, then the flu, then a month or so later, I got the flu again! Somewhere in there I picked up a slight stomach virus for a few days as well. I don't know if it had anything to do with it, but on the word of my doctor, I had stopped taking my Super-B Complex and iron supplements just prior to all of this. I didn't know if it would make a difference or not, but I started taking the Super-B Complex and iron supplements once again -- and haven't been sick since! I told my doctor about this, and she prescribed me an additional B-12 pill and quarterly B-12 injections. Have they helped? I don't know, but I guess they haven't hurt either.

Overall, my energy level has taken a slight downturn... as has my HGB level (slightly). It may be my imagination, but I think I am starting to feel more sluggish and tired. One of my HGB readings was 8.6 -- the lowest ever for me. I'm not sure when you really start to notice a low HGB reading... I just know how I've been feeling lately. A good bit more droopy. But still, I press on!

I have not been exercising regularly as I have been in the past, and I miss it. I need to get back to doing something on a more regular basis. We have moved to a new house in the past few months, and I feel like I have gotten plenty of exercise during the moving process!

For the first time in all of this blood ordeal, one of my hematologists referred to my situation as Moderate Aplastic Anemia! This may not seem like a big deal, but it made me feel a little better -- just being able to put a name on it!

Well, to sum up, overall it has been another good year. But I am noticing a sort of unnatural level of droopiness that I have never experienced. I am pretty sure within the next year, my doctors will be pushing me to get another bone marrow biopsy (my last one was in 2009). We'll see... I guess.

In closing, I want to say that I am very thankful for this Forum and for those who maintain it. I don't always chime in and say a lot... but I do check the forum frequently. Although I have not personally met any of you, I feel as if I know you and share a bond with you that few would understand. Thank you for your wisdom and your desire to help others with this terrible disease.

Until next time,
David M

KatailS

Thu Aug 9, 2018, 10:09 AM

Hi David
Thanks for checking in.... I was thinking of you and wondering how you were doing. I was hoping to see better numbers for you, and am thankful that they are not terribly worse. Story of our lives, eh?

I understand how having a name helps, it almost gives “validity” to your numbers.... strange as that may sound. I have a label from my doctor at Dana Farber but my local hematologist is reluctant to use it. I don’t know why. I guess I am lucky to exist in the area between ‘healthy’ and ‘sick’..... and should look at the bright side.... I am lucky that I don’t need treatment at this point. But it is tough because I know there is something deep inside of me that isn’t ‘right’ and nothing I can do about it. And no one (outside this forum) understands..... unless people can see an illness, they don’t believe it or validate it. Maybe having that label will help a bit for you.

I am not happy to hear that your numbers are slightly worse and that you are getting sick more.... hoping the extra supplements help. I do understand about the exercising... and I encourage you to do what you can do even tho it does seem to be more challenging. I was in the best condition of my life when my pancytopenia first reared it’s ugly head. I keep trying to stay active and fit, but it is harder as I bruise very easily and feel very light-headed..... and my latest problem is that my legs get very swollen the more I do..... but I keep at it. I hope you can too.

I am also grateful to everyone on this forum ... you are inspirational and your stories give me hope. I have learned so much from you all and your experiences and if it weren’t for you, David, and the people on this forum, I would feel very alone.

Good luck in your new house! Keep positive, my friend,.... and don’t forget to live each day to the fullest :)

David M

Thu Aug 9, 2018, 01:18 PM

KatailS

Thu Aug 9, 2018, 04:43 PM

Kathie,

Great to hear from you! Glad you are doing well!

Although I have experienced all the other things you mentioned after exercising, I have not experienced my legs swelling, I don't think... Have doctors told you that was because of your blood problem?

Just curious...

David M

Hi David
No one can explain the edema in my legs and no, they are not thinking it has anything to do with my blood. My hematologist wants me to see a cardiologist... which I guess I will do at some point.

Sally C

Thu Aug 9, 2018, 05:53 PM

Hi Kathie,
My husband Don is in his 7th year of remission from MDS which is why I post on this site just for your information.
He recently has been having a problem with his legs swelling which caused a few bouts of cellulitis - which is a bacterial infection caused by poor leg circulation and the swelling. But that's an aside. The doctor told him to get compression socks (he measured his legs and ankles then ordered his size from Amazon) and also to elevate them above his heart. They would really swell after a round of golf. The fluid accumulating in the legs makes the heart work harder to pump the blood from the legs/ankles because of the swelling. He has been wearing them sun up to sun down and the improvement has been remarkable. He is 72.
You may want to try this until you see a cardiologist. It could be an easy fix although you still should follow the instructions of your doctor and get checked by a heart doc.
All the best,
Sally

KatailS

Thu Aug 9, 2018, 06:17 PM

Sally C

Thu Aug 9, 2018, 07:40 PM

You are so welcome Kathie. He tried several brands and settled on EvoNation. It took him a while to become a believer but today he played golf with only one on his bad leg - one leg with a black knee high sock and one leg with a short white golf sock - with shorts. What a fashion statement! :)
Good Luck!
Sally

David M

Fri Jul 19, 2019, 08:58 PM

Hello All,

It is time once again for a yearly update! Thankfully, things this year have continued to be "amazingly stable" -- at least that is what my hematologist at Vanderbilt said.

Below are counts from my last 4 CBCs... (10/17/18, 3/18/19, 7/9/19, 7/17/19):
RBC: 2.75...2.69...2.61.... 2.78
WBC: 3.4...3.7...3.1... 3.4
Lymph #: 1.3...1.4...1.25.... 1.6
Lymph %: 39.7...37.2...40.6.... 40.4
Neut #: 1.35...1.52...1.19.... 1.4
Neut %: 40.3...40.6... 38.7... 34.8
Hgb: 10.2...10.0...9.6.... 10.2
HCT: 30.8...29.8... 29.0... 30.6
Platelet: 40...57...55.... 58

In fact, my counts have been low -- but stable -- since 2009. I asked him about the "rareness" of this type of stability... he said something like, "Well, think about it this way -- about 1 in 1 million people get AA... and of the 80 or so AA patients I am currently seeing, I have 2 or 3 who have stable counts like this." That ratio sounds about right to me -- I have met some of them on MarrowForums as well, but we are the exception and not the rule when it comes to AA.

In the past year, I have not been getting more frequent infections and have not been experiencing any abnormal bruising. Two years ago, I got the flu twice, but in this past year, I did not get the flu at all. I do seem to have a little less stamina than I used to -- a noticeable decrease. But generally, when I get tired, I rest for a while and then continue on with whatever I was trying to do.

One interesting thing happened during this past year with some genetic testing (at least I thought it was interesting). I had a cousin living in a distant state who was diagnosed with Stage 4 breast cancer. Her doctors had her tested for the BRCA2 mutation, and she tested positive. (Being positive for BRCA2 does not mean a person will absolutely get cancer, but it heightens the risk.) This mutation runs in families -- i.e. if a parent has it, there is a 50% chance each child could have it. It seemed obvious to us that it came through my cousin's mother -- my mother's sister. My mother was tested -- and she also was positive for BRCA2. However, I tested negative for it. From the little research I did on it, there is some relationship with Fanconi Anemia and BRCA2 -- but I think it has to be present in both parents or something... and this type of anemia almost always manifests itself in children. I thought maybe this would be the "smoking gun" of why my counts are low... but apparently not! Still, the whole episode was interesting. My sister also tested negative, and my brother is soon to be tested. Interesting, but mostly irrelevant to my status.

One more thing I'll mention, since I'm here... I recently asked my hematologist what he would do if he were in my place. He remarked that since my counts are low, but stable, it did not seem reasonable given my current levels to try any medical procedures or meds to try and boost counts, etc. That seemed reasonable to me. But what I did not hear from him (nor have I really heard it from any of my hematologists through the years) are recommendations to do common sense things, like: (1) drink X amount of water every day; (2) eat "this or that" type of foods that are rich in things needed by the bone marrow; (3) take this supplement or that supplement; (4) exercise... blah blah blah. It seems like all of these "common sense" things are very important, but I don't recall hearing any of my doctors encourage any of them! Not complaining, just always surprised, I guess.

Well, that is enough for now. I am always thankful for this forum. I do feel like I am not alone. I know we all have different struggles, but it is nice to have a place to "go" where we can share with each other and encourage each other along the way.

Until next time,
David M

Neil Cuadra

Sat Jul 20, 2019, 04:33 PM

David,

I'm glad to hear that you are "amazingly stable."

From your last CBCs, you seem to have an absolute neutrophil count less than 1500. Some doctors consider that mildly neutropenia, leaving you with a higher risk of infections than the average person, and that matches your experience of more frequent infections.

You're right that hematologists don't often give basic advice about daily habits and diet. Getting enough fluids and exercise is good advice that applies to everyone. I've always assumed that a balanced and healthful diet improves your overall health, which helps you fight any disease you might encounter.

David M

Thu Jul 9, 2020, 07:11 PM

Hello All,

It seems the years are flying by -- and so far, 2020 is a strange one! We have managed to avoid getting COVID-19 (so far), and aside from the weirdness of wearing masks in public, working from home, and not going many places... things haven't been too bad for us. Still, we wish for a return to "normal" -- if such is even possible now.

Today, I went for my yearly visit to my hematologist at Vanderbilt in Nashville, TN. Overall, it was an uneventful visit, but we certainly enjoyed talking with the doctor for a while about my ongoing condition and various options as we look ahead.

My situation with Mild AA is largely unchanged. In the past year, and in fact, for the past several years now, my counts have been pretty stable. Still, we watch and wait, and I deal with relatively minor inconveniences such as reduced stamina. I consider my current state a blessing -- compared to how it could be. And of course, I know things can change.

According to the doctor, he examined my blood cells under a microscope, and although fewer in number than "normal," he said the various types of cells all look healthy and well-formed -- which is a good thing. He commented again on the amazing stability of my counts over several years now -- low, but stable.

Below are counts from my last 4 CBCs (10/17/19, 2/17/20, 6/15/20, 7/9/20):
RBC: 2.88...2.76...2.67.... 2.80
WBC: 3.4...3.6...3.1... 3.5
Lymph #: 1.3...1.6...1.3.... 1.18
Lymph %: 38.3...44.2...41.3.... 33.4
Neut #: 1.45...1.1...1.08.... 1.57
Neut %: 43...30.4... 35.5... 44.5
Hgb: 10.5...10.0...9.8.... 10.1
HCT: 31.6...30.6... 29.5... 30.0
Platelet: 48...50...58.... 55

Thankfully, I have not had frequent infections, bleeding/bruising issues, etc. I have had some issues with stamina upon exertion, but in general, I bounce back after a few minutes of rest and recovery time.

I mentioned to the doctor that I also seem to be having some problems with focus and concentration -- my job requires me to read quite a bit and try to understand some pretty involved concepts... and it seems I have to work much harder than usual to keep my mind focused. Of course, it is hard to pinpoint or quantify this type of thing (e.g. I wonder to myself, "Am I just imagining all of this 'lack of focus' thing -- or is it real?"). The doctor suggested a B-Complex supplement might help some with focus -- i.e. some people he knows claim they have noticed an improvement after taking such for a while. I'll give it a try!

We also discussed possible medications that are now available that could possibly boost my blood production, raise my HGB, and provide overall improvement in stamina. However, the risk is likely not worth the reward in my case. The currently available meds all would likely provide some benefit, but they all have potential serious side-effects. We can revisit this idea if my overall counts take a downward turn at some point, but for now, it seems best not to go with the meds.

I guess that is all for now. Again, I am very thankful for the measure of health I've got -- it's not perfect, but it could be much worse. I am also thankful for this community. I hope and pray you have a blessed 2020!

And be careful out there!

Until next time,
David M

Neil Cuadra

Fri Jul 10, 2020, 06:51 PM

Good to hear, David.

I think you're being wise and practical to avoid side effects of the meds. It probably means living with a lower HGB count than might be achieved, but better to be safe than sorry, even if low HGB contributes to an occasional a lack of concentration.

You're living, you're working, you're reading and writing and sharing, and stable. Keep it up!

Here's a more readable version of your counts, using the CODE tag:

Count 10/17/19 2/17/20 6/15/20 7/9/20
-------- -------- ------- ------- ------
RBC 2.88 2.76 2.67 2.80
WBC 3.4 3.6 3.1 3.5
Lymph # 1.3 1.6 1.3 1.18
Lymph % 38.3 44.2 41.3 33.4
Neut # 1.45 1.1 1.08 1.57
Neut % 43 30.4 35.5 44.5
Hgb 10.5 10.0 9.8 10.1
HCT 31.6 30.6 29.5 30.0
Platelet 48 50 58 55

David M

Mon Jul 13, 2020, 09:30 AM

Wow, I need to learn how to use the "Code" tag! That table looks nice -- thanks for doing that!

David M

Marlene

Mon Jul 13, 2020, 11:54 AM

Glad things are holding. Wish there was easy and effective way to combat the fatigue though. What works for one person doesn't always work for others. Lots of personal trial and error to figure it out. John does pretty good with a HBG holding at 11 -12.

I just finished a new book on breathing which had some good insights on increasing energy and blood flow through various breathing methods/exercises. Even though your RBC is low, there may benefit in improving the process that releases the oxygen from the red cells to other cells needing it. Aside from the cost of the book, breath work is free. It's called Breath, The new science of a lost art by James Nestor in case you're interested.

Wishing you continued good health.

Marlene

David M

Tue Jul 14, 2020, 01:39 PM

Marlene,

I will definitely look into "Breath"... from what I've heard, it sounds quite interesting -- and maybe very helpful!

Thanks,
David M

David M

Thu Jul 8, 2021, 07:11 PM

Hello All,

God has blessed me with another year on this earth, so it is time for another yearly update! Since my last posting in ~July 2020, a lot has happened with me, but blood-wise, things are still pretty good. The high-lights -- or perhaps low-lights:

(1) On August 27, 2020, my mother passed away after having a massive stroke a couple of days before. This was quite a shock, since she appeared to be in great health up until this time. She was 78.
(2) As the entire family converged for my mother's funeral, those of us in the immediate family ALL got Covid-19! Most were only sick for a week or so, but my brother and I stayed sick a little longer.
(3) My brother was put in the local hospital with Covid-pneumonia. They also ran MANY tests on him due to some irregularities in his blood. More about that below. He was in the hospital 2-3 weeks.
(4) After a couple of weeks, I was not getting better, so I went to the ER in Huntsville, AL. They found my counts were the lowest I had ever seen them (see summary below for 9/13 and 9/14). They ended up giving me a unit of RBC and a unit of platelets and sending me home. I soon recovered.
(5) After many more tests (including BMBs and numerous CBCs, etc.), my brother was diagnosed with Myelofibrosis -- a rare form of blood cancer. After much more testing, consultation with doctors at the Sarah Cannon Clinic in Nashville, etc., he is within days of getting a stem cell transplant. Had he not gotten Covid, he might never have known (until it was too late) that he had this blood cancer brewing. (It is really strange to me that me and my brother have 2 completely different one-in-a-million blood problems -- apparently my sister missed out on all this!)

So, these last several months have been rather eventful. I also changed companies in November, so I have had the added excitement of starting a completely new job! It was time to leave, but still -- starting a new job can be stressful... and I realize at times just how foggy my brain is when I really have to concentrate and think!

Other than all that, my health report for this past year is unremarkable. No abnormal bleeding, bruising, or infections. I did experience some petechiae on my lower legs for the first time a couple of weeks ago, but it soon went away. Overall, as my doctor at Vanderbilt likes to say: "Things appear remarkably stable." I am very thankful for this stability, because I know it is subject to change at any time.

Still, I have noticed more and more a feeling of being tired and draggy. Sometimes I have to really push to motivate myself to get going. My stamina and endurance have noticeably dropped in the last year. But also, I have not done any regular exercise since I had Covid -- and I think this contributes to my lack of zip. I need to get back to at least walking regularly. As I told my wife the other day, "I feel like a worthless slug." She replied, "Oh dear, you aren't worthless!" (Ok, I get it... I am a slug, of great value. Ha)

Below are counts from my last 6 CBCs (9/13/20*, 9/14/20*, 10/16/20, 12/14/20, 4/19/21, 7/8/21):
RBC:........1.84....1.89....2.55....2.82....2.68....2.82
WBC:.......3.46....3.16....4.00....4.20....3.60....4.20
Lymph #:..0.84....0.89....1.40....1.80....1.50....1.39
Lymph %:.23.5....????.....35.4....43.1....42.1....33.2
Neut #:....2.05....1.85....1.67....1.42....1.33....1.89
Neut %:...59.1....????.....42.3....34.3....37.4....45.2
Hgb:........7.20....7.30....9.00....10.4....9.70....10.1
HCT:........21.0....21.4....27.4....31.1....29.4....31.0
Platelet:...26.......28......52.......80...... 62......71

* Readings were taken while I had Covid-19.

As at my last visit, my hematologist at Vanderbilt discussed available medication options for possibly improving my blood counts. The most appealing option is Promacta which is apparently gaining in popularity and giving favorable results for many -- and it doesn't suppress your immune system. Of course with any drug, there are side effects to consider. However, he said in my case, Promacta might not really improve my HGB that much. My HGB currently hovers around 9.5-10.5, so he said it might slightly improve it to something like 11, rather than significantly raising it to something like 14. So, for me, it likely wouldn't be worth the trouble at this time. Now, if my HGB dropped down to the 7-8 range, it would be a great option to consider.

Well, I've blathered on enough for now. I pray you all have a great 2021-2022...

Until next time,
David M

Hopeful

Fri Jul 9, 2021, 11:35 AM

Hi David M,

I'm glad that you were able to fight off COVID!

I can relate to the mental sluggishness when your an HGB is below 11 and the challenge of starting a new job. Both are very difficult on there own! There is a BIG difference between HGB of 10 and even 11. Hang in there and remember that you were good enough to get the job!

It is interesting that your brother also has bone marrow issues.
Have you ever had genetic testing done?
Have you been tested for PNH before?

I am a little wary of Promacta for myself, as I have read that it may accelerate other abnormalities if your have them, like MDS(-7).

Have you considered EPO or do you have low EPO levels? It's not a fix, but may give you a boost.

I hope you are able to keep up the exercising! I think it helps your overall health - both physically and mentally.

David M

Fri Jul 9, 2021, 11:27 PM

Hello Hopeful,

Thanks for your encouraging comments!

Yes, Covid was a bear. It made me feel terrible, and I never want to experience it again, if possible. I had mixed feelings about getting the vaccine, but my doctors recommended it, and I am hopeful that it will keep Covid away for a while, at least.

My HGB hovers between 9.0 and 10.5... I'd like to experience 11.0 once again, or better yet, 14.0!

About my brother... yes, it is beyond strange to me that my brother and I both have 1-in-a-multi-million blood problems. It is probably near the odds of lightning striking both of us on separate occasions. I have asked some "experts," and they assure me that there is no relationship between AA and myelofibrosis... but the Software Engineer in me says -- "Yeah, right."

I have had some genetic testing done over the years. I know when I was first diagnosed, there were many tests done, and they told me they saw no evidence of Myelodysplasia (I assume there was some genetic testing done there?). Later, I was tested for the JAK2 mutation, and that panel included several other genetic tests. Recently, for reasons unrelated to Aplastic Anemia, I was tested for the BRCA2 mutation (I had a cousin who had the mutation who had breast cancer; and BRCA2 runs in a family; and btw, my brother was positive for this one.). I was also tested for PNH. All these tests were negative. The doctors have always said my blood cells look healthy, there just aren't enough of them.

I do not have low EPO levels.

Speaking of exercise, I really do like to exercise. Once I get in a daily routine, I look forward to it. But I seem to have trouble getting into that daily routine at times. If something derails me, it is hard for me to startup again. But, it is time to try -- exercise is good medicine (and it's free)!

Thanks again,
David M

Matthew42

Thu Jul 15, 2021, 10:22 PM

Dear everyone,

I am sitting in here in tears tonight.

My mother developed (69 years-old) developed severe aplastic anemia two weeks after having Covid-19. She went undiagnosed for almost 3 months before ending up in the emergency room. 2 weeks after her emergency room visit, she was told by a very reputable hematologist that she has severe aplastic anemia. He was looking hard for MDS because of her age, but said that it was 100% aplastic anemia. She had 5% cellularity, or something like that. She never had a real low white blood cell count (average about 2.4 or something), and her neutrophils averaged around 400-500 (still very low, but not under 200).

So 12 weeks ago, my mother had hATG . She is taking cyclosporine (350 mg) and 150 mg of Promacta a day. My mother is in otherwise good health (no diabetes, heart problems, etc.). 8 weeks after ATG, my mother's hematologist says that neutrophils were up 600-800 and that was a really good sign. In the past 2 weeks, we've notice that her hemoglobin is not dropping near as fast. Even her platelets don't drop nearly as low (under 10) after 7-8 days.

^ I'm telling you this because we went to see her hematologist today for her 3-month appointment. Right from the start, she tells her that her treatment doesn't seem to be working because she is not transfusion-free. She said that most people are transfusion independent at 3 months for both blood and platelets. She says that they will need to do a biopsy of her bone marrow to check for cellularity levels in a few weeks. If this is still low, then she will probably have to have Rabbit ATG about a month afterwards.

We were all under the impression that it could take up to 6 months or more to become transfusion independent. The hematologist told us 3-6 months, initially. And now she acts like she should be all fine and dandy at 12 weeks post-ATG. My mother started to cry. And then, my dad said, "What if the rabbit ATG doesn't work?" The hematologist replied, "Then, you do a BMT, which, at 69, is highly risky".
So, it was all bad news after just 12-weeks post-ATG.

I really don't know what to think at this point. Barely anyone has this disease, and so I have no choice but to find help online.

We never knew that 12 weeks was it. If you're not transfusion-free by that point, your hATG isn't going to work. We never knew that. Like I said, her neutrophils are averaging 700 and her hemoglobin has been dropping a lot more slowly than two weeks ago. Also, her platelets are a tiny bit better (she drops to 15 after 6-7 days instead of under 10).

My dad got a little bit upset and said that her hemoglobin isn't dropping as fast as before, and the hematologist said, "Well, you got a point there." ?????

I am so upset right now, I can barely breathe. My mother is crying a lot and thinking that she has no hope.

So, must you be transfusion independent at exactly 12 weeks? So, if her bone marrow biopsy shows low cellularity at 14 weeks, then it is a sure thing that ATG is not working?

By the way, my mother had genetic testing done, and she told her she thought she had acquired severe aplastic anemia, possibly brought on by Covid-19. Also, they're not sure if abusing naproxen over several years (1000 mg/day) may have helped bring it on, too. Over-the-counter naproxen is known to trigger aplastic anemia, or some kind of bone marrow failure.

I would appreciate if anyone on here could please let me know what the situation is here. I am clueless. I know zilch about this disease. I am sorry to bother you all, but I am in tears now.

I give you all my best wishes. May you all be happy and well.

Neil Cuadra

Fri Jul 16, 2021, 12:58 AM

Matthew,

I'll give you my opinions as an experienced layperson.

I've heard the same 3-to-6-month estimate that you initially heard, so I'm puzzled about the recommendation to jump to another round of ATG without giving the initial round more time, especially if your mother's counts are lasting longer between transfusions.

The upcoming bone marrow biopsy, unpleasant as it may be, could provide useful information about the status or progress of the disease. That will also confirm for you that it's not MDS. Did your mother already have a BMB that ruled out MDS? If so, how long ago? I don't know how they'd be 100% certain of the diagnosis otherwise.

Be sure to ask for a copy of each biopsy report, and an explanation in layperson's terms.

It sounds like your family doesn't have a great rapport with the hematologist. If you can arrange for your mother to go to another treatment facility for a second opinion, you might get explanations that make more sense to you or, possibly, confirmation of reasons to go for rATG soon.

I wouldn't spend time worrying about whether naproxen and/or Covid-19 was a cause or a trigger for your mother's SAA. It really doesn't matter at this point. What matters is how to help her now, including whether side effects from current medications or lingering Covid-19 effects might be affecting her and complicating her ATG recovery.

It's natural to wonder what will happen if this or that treatment down the road doesn't help, but it can be very stressful to consider all possible bad outcomes, rather consider the current choices and concentrate on making the best decision for right now. It's true that about 1/3 of SAA patients relapse or fail immunosuppressive therapy (e.g., ATG and cyclosporin), after which transplants, other treatments, or clinical trials are possibilities. And 69 is no longer too old for transplants, especially for someone in otherwise good health. These days, many patients in their 70s are undergoing transplants with reduced-intensity chemotherapy. Yes it has risk, but that's to be weighed against other choices, not ruled out a priori.

You can learn more about SAA by contacting the Aplastic Anemia and MDS International Foundation (https://aamds.org) (800-747-2820, help@aamds.org).

Matthew42

Fri Jul 16, 2021, 09:50 AM

Dear Neil,

You don't know how much I appreciate your responding so quickly. That was so kind of you. I am truly grateful.

I do see that you know a lot about aplastic anemia.

To answer your question, my mother had two different biopsies of her bone marrow. The first was about 5 months ago. And the second was about 4 months ago. Let me tell you the story: She had an initial biopsy at a small hospital. The hematologist she was seeing basically ruled out all blood cancer except lymphoma. But then said, it would take several more weeks to get a diagnosis because more of the bone marrow needed to be analyzed. So, in the meantime, my mother developed severe jaundice. She was rushed to a city research hospital where she was diagnosed with a drug-induced liver injury (DILI) caused by the antibiotic Augmentin. They said her liver would be just fine and that no medication would be necessary. They then decided to bring in the hospital's hematologist team to diagnose her the cause of her anemia. The top hematologist said that the first biopsy was inconclusive but almost knew for sure that she had either aplastic anemia or MDS. He then proceeded to have her do a second bone marrow biopsy (one that was super thorough). 4 days later, he comes back and tells her that she definitely has aplastic anemia - 100%. He suspected MDS because of her age, but said that he scrutinized the marrow and no presence of MDS. He thought the the first biopsy was terribly done and said that he really had to scrutinize the bone marrow to distinguish between aplastic anemia and MDS because of her age. She was told that aplastic anemia normally doesn't strike people her age in general, but it does happen. Another hematologist spoke to her a day later at the research hospital and acted like her age didn't matter that much so much because she was in a very good health overall. The research hospital then referred her to her current hematologist who talks about her age all the time.

The only thing I know is that she is getting blood transfusions less often as her levels don't drop near as fast (every two weeks instead of one). It's only been 12 weeks since ATG. I have no idea why her current hematologist is jumping the gun like this.:confused: We're already talking about rabbit ATG and a bone marrow transplant at 12 weeks. It's hard to stay in the present moment.

You're right: knowing the cause of the disease is not going to help now. She is not supposed to ever take naproxen again, however. The doctors said "no more", as that may have been a trigger. Also, she took benzo sleeping pill for many years, and that doctors were not happy about that, either. Naproxen and Restoril (benzo) + Covid-19.....all of those can easily induce aplastic anemia in vulnerable people.

By the way, what are other treatments are there for aplastic anemia besides horse and rabbit ATG/cyclosporine, if not a BMT?

Again, I am super grateful for your post. May you be well, Neil.:)

Best wishes!

Marlene

Sun Jul 18, 2021, 01:02 PM

Matthew42

Sun Jul 18, 2021, 01:39 PM

Hi Matthew,

This publication may be helpful to you. It is from 2012 but much is still relevant. I too agree that it's a bit early to consider another round at three months since there has been a response. Your mom's case is a little complicated due prior issues.

https://ashpublications.org/blood/article/120/6/1185/30513/How-I-treat-acquired-aplastic-anemia

You may want to look at the drug Eltrombopag. It's fairly new and I don't know enough about it to comment on its use/success.

It's also a good idea to get copies of the labs and chart them to look for trends vs just individual abc's. Also include, if you have them, blood work results that preceded the onset of all of this.

I assume they ruled out all nutritional issues and GI problems like ulcers/bleeding from being on Naproxan.

If your family is not comfortable with the treatment recommendation, I would definitely seek another opinion from someone who has experience treating SAA. You may want to consider contacting NIH/ Dr. Neal Yound.

I think you should start a new thread under the aplastic anemia section and ask your questions there. It's more specific to your situation and you may get more responses.

Hi Marlene,

That was so nice of you to respond. Again, as I said to Neil above, I am really grateful for comments. I'm all new to this. Never knew about such a disease, but who would, knowing how rare it is?

Her hematologist still tells her that she has 90% chance that either horse or rabbit AGT will work. A month ago, she said was so happy that her neutrophils were in the 600-800 range from 300-500 before (Her neutrophils were averaging 400-500 before treatment, which meant that she didn't have VSAA, which I never even knew of). Now, this past Thursday, the hematologist had less enthusiasm, saying that her levels aren't coming up like they should be by 12 weeks. My dad said that my mother's levels are dropping more slowly, and she responded, "Well, I'll have to give you that."

She had extensive genetic testing done months ago, but was told that the acting hematologist has all the info now. There wasn't anything that showed a genetic cause for the aplastic anemia. It appears to be acquired from medication + Covid-19, but no one will say 100%, but likely. She cannot touch Naproxen, or any benzodiazepine. ever again, as they are likely to trigger a relapse. She always has to take special measures to prevent getting any future viruses like stomach flus, etc. So, it's very unlikely she has idiopathic SAA.

Here is what the doctors think: She developed MAA from medication, and then Covid-19 turned it severe. Doctors said that they know for certain that abusing Naproxen or taking benzos can cause benign bone marrow failure.

By the way, she's been on Promacta for 12 weeks. Her doctor insisted on it.

For the past two-three days, she has felt much stronger than she has for months.

No matter what, she says she's waiting it out for 12 more weeks, particularly if her transfusions become less and less over time.

Some researcher online I read said that it can take 2-3 years for AGT to fully repair the bone marrow levels from AA??? Wouldn't it be theoretically possible for someone to be transfusion-dependent for one year or two and still recover?

Finally, her doctor also said that 65% of her patients make full recoveries from ATG +cyclosporine + Promacta, with only minor relapses for some. 30% will have major relapses (1 or 2) but will go on to long-term remission, or they will have a series of short-term remissions that will require long-term use of cyclosporine. 10-15% or so will have to to have a bone marrow transplant, but she usually knows who those patients will be before starting ATG + cyclosporine treatment based on genetic testing, etc. So, my mother, she said, has a 10% that she will need a bone marrow transplant, and still says that it is very unlikely.

My mother just doesn't want to go through a second round of AGT, even though she went through it really well the first time. She's worried it will cause more harm to her aging body. She doesn't think the doctor is considering her age, either, in her responding more slowly to treatment. She's not 20 or 40 years-old.

By the way, she never had internal bleeding from abusing naproxen. Her primary care physician and arthritis doctor told her to take 900 mg a day of naproxen years ago. Her hematologists and emergency doctors couldn't believe that she was told to take that much naproxen. They were concerned that this triggered moderate aplastic anemia.

Wishing you and your husband great health,

Matthew

Matthew42

Mon Jul 19, 2021, 02:18 PM

Well, she got a blood test today and she will need a blood and platelet transfusion. Her hemoglobin dropped from 8.0 to 7.1 in 4 days (I hope the lab was right). Her neutrophils are staying steady around 700-800. Everything else is normal in her blood work. She went two weeks without a RBC transfusion, which is the the longest she's gone since ATG. Her platelets are a teeny tiny better. Normally after 4 days, her platelets are under 12; now, they're around 16.

Edit: She went 3 weeks without a transfusion after right after ATG + Prednisone. I forgot about that. But this is the longest she went without blood since that 3 weeks elapsed.

Why did she go three weeks without a blood transfusion right after ATG + Prednisone? The hematologist never said anything about this.

Neil Cuadra

Tue Jul 20, 2021, 10:26 AM

Matthew,

You asked about other treatments for aplastic anemia.

There are drugs that can boost blood counts. They can reduce the need for transfusions and reduce the effects of low blood counts, e.g., fatigue, headaches, bleeding, bruising. But they don't treat the disease, which is the underlying cause of low blood counts.

In contrast, the goal of primary treatments with ATG, cyclosporine, and eltrombopag (brand name Promacta) is to control the disease (aplastic anemia). If the disease can be controlled, blood cell production can return to normal, or at least get blood counts up out of the danger zone.

ATG can be given any number of times. Our friend Andrea (http://www.marrowforums.org/profiles/Andrea_Pecor.html) had ATG treatment five times and is now doing fine.

David M

Thu Jul 7, 2022, 11:15 PM

Hello Once Again,

Well, I have taken another trip around the sun, so it is time for another yearly update. The good news -- and the bad news -- is that things are really about the same overall. I would like for my blood counts to be "normal," but I'm very happy that I enjoy the measure of health that I do. My hemotologist describes my condition as "Moderate Aplastic Anemia," and I am thankful it is only moderate and not severe!

In this past year, things have been somewhat uneventful healthwise -- which is great! I think I had a second bout of Covid in January 2022, although I tested "negative." However, at the time, my son who lives with us tested positive, and we had the exact same symptoms. In addition, I also lost my sense of taste and smell. So, I'm pretty sure it was Covid... and for me, it was like a mild flu.

Other than that, I feel that my lack of stamina and overall fatigue has increased slightly over the last year. Of course, I am getting a bit older as well (now 58 years old), which may naturally account for some loss in these areas.

I feel also that it is more difficult for me to focus mentally -- i.e. to concentrate. As a software engineer, I often need to look at others' code and try to figure out and unravel how the code works... or to understand the nuances of the syntax of an unfamiliar software language -- and I get frustrated with myself as I try to focus on the task at hand. Again, aging likely plays some role here, but I have to believe a moderately low hemoglobin certainly doesn't help matters.

Below are counts from my last 3 CBCs (10/20/21, 4/18/22, 7/7/22):
RBC:........2.94....3.02....2.96
WBC:.......3.9........4.4....3.6
Lymph #:..1.7......2.00....1.5
Lymph %:.44.3....44.9.....41.3
Neut #:....1.35....1.47....1.25
Neut %:...34.8....33.3.....34.4
Hgb:........10.4....10.7....10.6
HCT:........31.6....33.1....32.0
Platelet:...57.......80......82

About the same as it has been overall for the last several years -- which is a good thing! I'm very thankful for such counts!

Also, one more thing... I mentioned my brother's situation in an earlier update. After getting Covid in the Fall of 2020, he was put in the local hospital for Covid pneumonia... and while there they noticed his blood counts were very low. Further testing revealed he had a rare, slow-moving, blood cancer known as myelofibrosis -- it might have not been diagnosed if he hadn't been put in the hospital for Covid! Since my last update, he has had a successful stem cell transplant, and he is now approaching one year post-transplant (it will be 1-year on July 21). He is currently battling some graft-vs-host issues, but otherwise, all his blood tests, etc., have been excellent!

Until next time,
David M

Marlene

Sat Jul 9, 2022, 03:38 PM

Glad you counts are holding David. Do you think maybe some of your symptoms might be related to having COVID?

Happy that your brother is doing well also.

Marlene

David M

Sat Jul 9, 2022, 10:10 PM

Marlene,

Good question... It is hard to say if my symptoms are Covid related -- Covid is sneaky... but I suspect they are not.

Seems like I have seen a very slight, gradual, progression of things over the years. I do know some people have had "long haul" ongoing symptoms from Covid, but not sure I have.

David M

David M

Fri Dec 30, 2022, 12:39 PM

I mentioned earlier that my brother had been diagnosed with myelofibrosis back in mid-2020. On July 21, 2021, he underwent a stem-cell transplant procedure in Nashville, TN, at the Sarah Cannon (aka Minnie Pearl) Cancer Clinic. He remained in Nashville for about 100 days after the transplant, and although it certainly was not an easy recovery, he did recover enough to go home after that.

His recovery was slow, but he eventually was able to get out and go places. He supported his daughter's softball team in her senior year of high school, and he was able to attend most, if not all, of the games. He was able to drive to various nearby places, go to church, eat at restaurants, do light yard-work, and had started to get back to "being himself" once again.

However, he never fully recovered his strength, appetite, energy, and muscle-mass lost during the stem cell transplant. During the transplant procedure and recovery, he had lost from about 185-190 lbs down to about 125 lbs. He had horrible mouth sores for much of the time that kept him from eating -- when he felt like eating.

He actually was able to celebrate living past the 1-year anniversary of his transplant -- and he seemed to be slowly recovering. However, he started having bouts of GVHD that still caused horrible mouth sores and other problems. He also lost his sense of taste for several months -- which didn't help him in his need to eat and gain back his weight. His doctors eventually put him back on JAKAFI, and perhaps other meds, to counter these problems.

After a short time, he started having odd symptoms. He started hallucinating on occasion, and his eyesight began to diminish. The doctors seemed to think these symptoms were within the range of symptoms one might experience on these powerful meds, but still, this was considered better than GVHD. As the symptoms worsened -- now including a sort of "goofiness" or "being high" aspect to his personality, which started becoming more extreme -- the family insisted that the doctors either take him off the meds or adjust them to a more appropriate dosage level. Something was defnitely wrong! The doctors finally decided to stop the meds and to take a closer look at his situation.

He checked in to Sarah Cannon Clinic in early October. The day before going there, he still could barely see, but he was doing well enough to be driving around his farm on a tractor. Shortly after checking into the clinic, his condition began to decline. Within a few days, he started sleeping almost all the time. Occasionally, he would awaken for short time, say a few words to family, and go back to sleep. He started waking less often and was in peaceful sleep almost continuously. After a few such weeks at Sarah Cannon, the doctors there were ready to give up and bring in palliative care!

The family was not ready to give up, and they did everything they could to have him transferred to Vanderbilt Hospital, just down the road. Finally, he was transferred to Vanderbilt, and at first, it looked like things would turn around. He hadn't spoken or been awake in several days, but after being transferred to Vanderbilt, he woke up and told his wife and daughters he loved them... he seemed be himself for a few minutes. Then he went back to sleep.

The medical teams at Vanderbilt worked feverishly and did everything they could to isolate the cause of my brother's trouble. They did repeated spinal taps, but these showed no sign of infection or of what might be going on in the brain. Finally, as a sort of last resort, they did a brain biospy. The MRI/CT scans had indicated some discoloration on and in the brain that appeared to be some kind of infection. Only by doing a brain biospy could they possibly identify the type of infection -- to determine how to possibly treat it. Unfortunately, the brain biopsy also showed no infection!

Sadly, my brother passed away at Vanderbilt Hospital a few days later (i.e. October 30, 2022) from a brain bleed. The doctors there and at Sarah Cannon never were able to identify with certainty what had happened to my brother's brain to cause his downward spiral. Biopsy tissue sent to the CDC was checked by them and results there were also inconclusive.

The only theory that has made much sense to me was that the JAKAFI (and perhaps other meds he had been given) used to counter the GVHD had lowered his immune system to the point that an opportunistic virus (PML, perhaps?) attacked his brain and did great damage. Then when the JAKAFI (and other meds) were stopped, his immune system returned and destroyed the GVHD. But by this time, the damage to the brain had been done; the discoloration in the scans was not showing "infection," it was showing the damage done by the earlier virus attack. Well, that is just a theory, but it fits the evidence, as far as I can see.

I just wanted to give you all an update. Sorry for the sad story; but it was a sad and difficult time for us. Please keep my brother's family in your prayers.

David M

Tue Jul 18, 2023, 07:51 PM

Hello All,

It is hard to believe, but it is once again time for a yearly update on my "story."

Not a lot to report at this point in 2023, and of course, that is a good thing! We love stability and consistency here!

Healthwise, I feel pretty good overall. I haven't been sick much in the last year -- just a sinus infection or two, maybe a stomach bug, but not much more than that. I have not had abnormal bruising or bleeding. My stamina and endurance levels seem to be less than they were, but that change has been slight. I notice it most when I try to exert myself, and way before I think I ought to, I tire out and have to rest -- so frustrating! But overall, I can't complain.

My blood counts in the last year have sort of held their own... maybe even some slight improvement (can we do that?) in the platelets (hovering in the 80K range for the past year and a half!).

Below are counts from my last 3 CBCs (11/3/22, 5/8/23, 7/18/23):
RBC:........2.98....3.05....2.96
WBC:.......3.8........4.2....4.1
Lymph #:..1.5......1.7....1.31
Lymph %:39.0....40.3.....31.6
Neut #:....1.47....1.58....1.85
Neut %:...39.0....37.9.....44.7
Hgb:........10.7....10.8....10.2
HCT:........32.4....32.7....32.0
Platelet:...82.......86......78

One encouraging bit of news the hematologist at Vanderbilt shared today was about the drug, Promacta. During the last 10 years or so, there has been a pretty good amount of data collected on this drug, and it seems to be effective in helping the body increase production of red, white, and platelet cells -- with somewhat manageable side effects. There seems to be a glimmer of hope that this drug will be an increasingly beneficial and effective tool in treating AA and similar diseases.

One additional item occurred in the last year -- not sure if I mentioned this or not in an earlier post. My local hematologist, searching for clues as to why my blood counts have been low all these years, recommended I take a genetic test panel done by a company called siParadigm. The test covers something like 60 different genetic markers (e.g. Stem Cell, Myeloid, T-Cell, B-Cell, NK Cell, and misc. other markers). Honestly, I don't understand much of this genetic stuff. However, the good news is, the test results did not show any abnormalities in my genetic makeup -- my cells (though few in number) appear to be well-formed and healthy.

So, overall, my diagnosis stands as "Moderate Aplastic Anemia" -- cause unknown. It appears my hypo-cellular bone marrow is doing an adequate job of making healthy blood cells -- just not an abundance of them. But all things considered, I am very thankful to be alive and to enjoy the measure of health that I have!

Until next time,
David M

Sally C

Wed Jul 19, 2023, 08:13 AM

Hi David,
Congratulations on your AA being stable.
I can shed a little light on Promacta. My husband was in clinical trials for MDS at The NIH starting back in 2009. Nothing had worked after having over 125 blood/platelet transfusions. Since NIH had such success with Promacta in AA patients they decided to do a trial on MDS patients. Don was the first in that clinical trial. Long story short, they started him in the spring of 2011 and stopped in August 2012 when his platelets hit 100,000. He has been in what you could call remission ever since. His reds are pretty much normal, his whites are normal and his platelets hover around 80,000 to 100,000 give or take. Nothing short of a Miracle. Last check was this month. It was very well tolerated. Please keep us posted if they do try Promacta.
All the best,
Sally

David M

Thu Jul 20, 2023, 09:44 AM

Sally C,

Wow, sounds like a great response to Promacta! I'm happy for you and your husband!

In my case, according to the doctor, my numbers are low, but they are really too high to justify prescribing Promacta at the moment. And it can be quite expensive, as I understand it -- even if insurance covers a good part of the expense, the remaining part can be hefty.

Also, there are some risks -- although apparently more and more manageable -- to the liver, etc. So, in my case, while I would love to boost my counts up to a "normal range," it might not be the best course to go with Promacta at this point.

However, it sounds like to me, the technology around Promacta is improving quickly. Hopefully in a few years, Promacta (or something even better) will be readily available and effective for AA and MDS patients everywhere! Sounds promising!

Thanks for your reply -- quite amazing!

David M

Thu Dec 14, 2023, 07:22 PM

As I read back over my many years of updates, I am very thankful for this community -- for the great support and help and wisdom that I have received from so many on MarrowForums.

There have been many times when life seemed so uncertain, but I have found so much good information here, and also I have found a place at times to "vent" to people who understand some of the frustrations of these diseases. I encourage you all to take full advantage of this Forum!

Again, thank you so much for your help and support!

David M

David M

Thu Aug 15, 2024, 10:06 AM

Hello All,

Each year about this time, I try to post an update of my "progress" -- well, as long as the Lord blesses me with an additional year!

2024 has been another pretty stable year as far as the blood-counts go, which is a great blessing.

Healthwise, I'm feeling pretty good. During the past year, I've had Covid-19, and I've had various colds and things -- but nothing too bad. I recovered much like any person would who had more blood contents, so not many worries there overall.

I have noticed that my stamina seems to (once again) be dropping a bit. Sure, I'm a year older (I crossed the 60-threshold during this year), but this is more than just getting a little older. I'm in pretty decent shape physically -- but I tire out upon exertion very quickly -- very frustrating!

Below are counts from my last 4 CBCs (11/7/23, 5/6/24, 7/31/24, 8/13/24):
RBC:........2.78....2.69....2.8....2.79
WBC:.......3.7........3.5....4.6....3.4
Lymph #:..1.7......1.7....1.5....1.38
Lymph %:..46.2....48.1.....32.5....40.8
Neut #:....1.17....1.03....1.8....1.36
Neut %:...31.7....29.9.....40.1....40.3
Hgb:........10.1....9.8....10.0....10.1
HCT:........30.6....28.6....30.1....31.0
Platelet:...72.......57......78.... 80

Interestingly, I just met with my hematologist at Vanderbilt (I go there once each year), and he -- for really the first time -- suggested the idea that Promacta is out there as an option for me (even now) if I wanted to go that route. There are still concerns about side effects involving the liver, but he spoke as if those are almost always manageable. He still very conservatively suggested I not go with Promacta at this point -- but he made it clear that it is a pretty good option that has emerged. It is a risk vs. reward thing.

While I am struggling some with stamina issues, would Promacta make me feel that much different -- i.e. boosting my HGB from something like 9.5-10.0 to something like 14.0 (perhaps)? I wonder... would it be worth it? Personally, I kind of think it would be worth it... but I'm not really sure. I'm also not sure if insurance would cover it? Isn't it really expensive? Maybe some of you reading this have some light you can shed here on effectiveness and cost.

So, overall, things are rocking along much as they have been... which is a good thing. I will ponder the Promacta idea... and look into it some more. Thanks for "listening," and feel free to check in with me anytime!

Until next time,
David M

Sally C

Thu Aug 15, 2024, 08:37 PM

Hi David,
Congratulations on your stable CBC's. May I give you my husband's experience with Promacta. He has MDS and needed over 125 blood/platelet transfusions in 2009 through the spring of 2011. After getting Campath which did nothing, he was the first MDS patient to receive Promacta at The NIH after their success with AA. He started in the spring of 2011 and when his platelets reached 100,000 in August, 2012 he stopped it. He remains transfusion free to this day. He had no side effects whatsoever. At the time he was in his early 60's and he is now almost 79 - nothing short of a Miracle.
I wish you the best!
Sally
And I should add that the only count that's still low are his platelets - they hover around 80,000 - 100,000. His whites are totally normal and his reds are just below normal - sometimes normal. All 3 lines were affected by his MDS.

Marlene

Sun Aug 18, 2024, 02:32 PM

Hi David,

Glad you're hanging in there. John had stamina issues also. We did not have the option of Promacta back then. There were two areas we focused on for increasing stamina. ( I may already mentioned them. If so please excuse the repeat)

1 - Hormones: Get them all checked. We found John was not producing enough testosterone so he started using a bio-identical topical testosterone cream. And of course, not covered by insurance. And it's important to check and make sure your own and/or replacement testosterone is not converting to estrogen.

2 - Improve mitochondrial health to increase energy production in your cells: John used a supplement from Life Extension called Mitochondrial energy optimizer. There's a product called Mitopure which is used by many the sports world. The ingredient is Urolithin A. It can take 2 -3 months to see an improvement. But I personally feel that if your body really needs it, you'll notice the change sooner than someone in peak condition.

John was not able to sweep the sidewalk without taking multiple breaks. Everything exhausted him. Addressing these two issues made a world of difference for him.

Just food for thought....Hoping you find something to help. You get tired of being tired. I am glad that you are maintaining

Marlene

David M

Fri Jan 10, 2025, 03:56 PM

I felt I needed to add a little to "My Story" given the diagnosis I received over the last few days. I went in for my yearly checkup with my GP, and as he was going over the bloodwork (metabolic panel, mainly), he mentioned that my pre-diabetic levels have now qualified me to be diagnosed as "Type 2 Diabetic." I don't require any meds at this point -- just coping with lifestyle changes.

I can't say I didn't see this coming, I guess... but still, I felt blindsided by this information. Diabetic questions really haven't been prominent in my thinking... but now they certainly are! My head is still spinning from this, and I'm woefully ignorant of what it all means.

I am soon to attend some "Coping with Diabetes" classes the local hospital puts on that are very helpful and informative, but still, I am saddened quite a bit by this news. As my GP said, "We caught it very early in the process," and I know that is a good thing. But still...

So, my question for this forum is, are there special considerations or concerns we should keep in mind when it comes to the relationship between Type 2 Diabetes and Moderate Aplastic Anemia?

After initially writing this post, and while re-looking at my recent test report, I noticed that what we often refer to as the "A1c" reading is actually the "HgbA1c %" reading. I wondered: Is there some relationship between an abnormal Hgb level and an abnormal HgbA1C level? After doing a few quick searches online, I found several articles that relate the two! From a very cursory look at these articles, it appears that a low Hgb reading can somewhat "inflate" the HgbA1C reading -- so there is a sort of inverse relationship.

My Hgb tends to run between 9.5-10.0, where for a male my age, I think the low-end of "normal" is something like 14.0. So, I wonder if my GP has jumped the gun a bit on declaring me a Type 2 Diabetic by basing his diagnosis on an HbgA1c reading that is not accurate? Obviously, I need to read more on this possibility. Do any of you have any experience / knowledge in this area?

Thanks,
David M

David M

Fri Jan 17, 2025, 01:30 PM

I contacted my Hematologist at Vanderbilt and asked about the relationship between a low Hgb and the HgbA1c level. He said there is a relatively small relationship some have seen there, but for my particular case, the elevated HgbA1c level should be considered accurate.

So, there's the answer.

Until next time,
David M

David M

Sat May 3, 2025, 05:01 PM

All,

Speaking of eating and living better...

I wanted to mention something from a conversation I had with my local hematologist a while back related to personal energy and stamina -- perhaps some of you will find this helpful. I was concerned about my energy level (I had no energy) and stamina (I tire out very quickly), and I asked her if she had any recommendations for things I could to to try and maximize my stamina and energy.

She suggested two things: (1) Reducing sugars, etc., by adopting a Mediterranean Diet plan; (2) Drinking 2 oz. of Pomegranate juice daily (she mentioned some studies done of men battling prostate cancer, I think, and this had proven to be a positive benefit... maybe someone can Google it?).

Well, to be honest, at this point I haven't exactly adopted the Mediterranean Diet plan (although I have been reading up on it some, and it looks good to me), but my new eating habits due to my recent diabetes diagnosis have pushed me in that general direction. However, I have been faithfully drinking the 2 oz. of pomegranate juice daily.

Overall, I have felt a little better in the energy department. Stamina improvement? Not so much. But I'm still working on that one. I need to do a better job of incorporating regular exercise (at least walking) into my daily regimen -- exercise is a key ingredient I've not taken as seriously as I should.

Since my recent diabetes diagnosis, I have tried to adopt a better eating / living strategy... basically being mindful of my intake via reading labels and counting carbs -- and exercise. I guess I've been somewhat successful, but I still have a lot to learn. Cutting back drastically on sugar intake -- which is a personal goal I had considered for many years -- is something only now (under diabetes threat) have I taken real steps to do.

Anyway, a little food for thought... maybe these ramblings will help someone, or maybe some of you have suggestions as well.

Blessing to all,

David M

Matthew42

Mon May 5, 2025, 12:55 PM