Slow-moving AA / Pancytopenia, or What?

[KatailS]

Originally Posted by bailie

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.

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

[David M]

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.

Keep in touch!

David M

[Cheryl C]

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]

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]

Originally Posted by David M

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?

Hi David
I can't tell you what my diagnosis is yet but.....
Yes.... I feel exactly the same way and it has been so discouraging. Weak, wobbly, nauseated, winded and very shaky. I was very fit when this all began and my workouts were quite vigorous.... but it has become very difficult to push thru even a simple workout now. I do keep trying tho!
Will be interested to hear other people's experiences too.

Keep pushing that "wall", David

[Meri T.]

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]

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]

Originally Posted by Meri T.

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]

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]

Originally Posted by David M

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]

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]

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]

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]

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

[KatailS]

Originally Posted by David M

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]

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]

Originally Posted by Sally C

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

Hi Sally~
Thank you so much for your advice and sharing your husband’s experience with me. I was also advised to wear compression socks and was looking at ordering a pair from Amazon. I will definitely order them now and hope for some great results as well!
Kathie

[Sally C]

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]

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]

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]

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]

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]

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

David M

[Marlene]

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]

Marlene,

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

Thanks,
David M