Newbie Questions

[elrojo]

In April I was diagnosed with pancytopenia (low counts on red, white, and platelets) after routine bloodwork. I've been through lots of blood tests, a bone marrow biopsy, and abdominal ultrasound. My iron, folic acid, and B-12 readings are all within normal range. There is no evidence of leukemia cells in the blood or bone marrow. The bone marrow biopsy showed lower than expected level of red and white blood cells, but normal counts for platelets. The ultrasound showed an enlarged spleen. From what I've been able to understand, the tests did not indicate any dysplasia, just bone marrow not producing as much as I need.

The doctor says my autoimmune system may be destroying my platelets, while I am not producing enough red and white cells. I got a shot of growth factor (not sure which one), and he wants me to repeat every three weeks along with routine bloodwork.

I have not received a diagnosis, but he said it looks like pre-MDS. Have any of you heard of anything like this? I'd like to move on with my life, but would like to know how serious this is and plan accordingly.

Have any of you been through anything like this? Waiting for test results is really getting me down.

[Neil Cuadra]

Hi, elrojo.

Getting a specific diagnosis is very important. Have you been to the MD Anderson Cancer Center? They are the experts on bone marrow failure in the Houston area. If you haven't been there already and if your doctor hasn't consulted the hematologists there, you might consider going there for an evaluation or second opinion.

Your pancytopenia and lack of dysplasia might fit a diagnosis of aplastic anemia. An enlarged spleen can be a symptom of MDS but since you have normal cells and (I assume) they didn't find chromosomal abnormalities, it doesn't match the usual signs of MDS. I don't know what "pre-MDS" means.

It's worth asking which growth factor you were given. It may be Filgrastim, Neupogen or Neulasta, which are used to stimulate white cell growth. There are also red cell growth factors, Procrit, Epogen, and Aranesp.

Originally Posted by elrojo

The bone marrow biopsy showed lower than expected level of red and white blood cells, but normal counts for platelets.

It's not clear to me if this refers to the mature cells that leave the marrow and enter the blood stream or the immature cells in your bone marrow. With routine blood tests (called CBCs for Complete Blood Counts) they measure the mature cells in your circulating blood. In your bone marrow exam they were looking at the immature "precursor" cells that normally mature into blood cells and then enter the bloodstream. It might be helpful for you to ask what your "cellularity" is; that's the percentage of young blood-forming cells found during your bone marrow biopsy, and to confirm that your chromosomes looked normal.

Decisions about treatment (including no treatment) depend on the diagnosis, the specifics of your condition, how your blood counts and other symptoms change over time, and your age.

We forum members are patients and caregivers, not hematologists, so your doctor should be the key source of explanations behind your diagnosis. Ask lots of questions! I hope you have a doctor who will take the time to answer them.

[elrojo]

The BMB showed that the precursor cells were at a lower volume than normal. My hematologist did his residency at MD Anderson and has been consulting with doctors there. He was actually on the phone with them when I was in his office.

I have not heard the results of my chromosome test, last I heard they had not come back from the lab.

The growth factor injection I received was to stimulate red cell count.

I'm used to a quick diagnosis and subsequent treatment plan, but being bounced from doctor to doctor, and test results leading to more tests, waiting, and more tests is dragging things out.

I'm trying to learn the jargon, but as of now, the only number I really know is the Hgb of 9.1. Thanks for your patience.

[Al's Wife]

Before my husband was diagnosed with Myelodysplasia (MDS), we had a doctor tell us that it was a good thing they hadn't found what was causing his red blood cell and platelet problems. So maybe it will work in your favor that they have not found anything out conclusively.
Unfortunately in my husband's case it turned out to be MDS and he has now had his first round of chemo and is doing okay.
These forums are the best place to get information about the disease itself but, as a friend of mine says, "Don't borrow from tomorrow."
Try to be patient and wait for a definite diagnosis before you panic. And believe me, if it turns out to be MDS, you will panic. But try not to. Ten years ago there were no options, but thankfully, today there are several medications showing great promise, and there are clinical trials going on now that show even greater promise.
While I am just the caregiver for my husband who is fighting this disease, I am the one who researches and reads and wants to know as much about it as I can.
So hang in there and know that there are lots of people with great info if you need it. I'm praying you won't need it!
God bless,
Linda (Al's wife)

[elrojo]

I managed to talk to the nurse today about my latest blood test results. The growth factor injection helped my Hgb count somewhat. It's up to 10.7 from where it was a month ago at 9.1. My platelets are up to 125,000 from 77,000 a month ago. My WBC is down a little, but I didn't catch the numbers and I haven't been having problems with infections. I know these numbers are below the normal range, but am encouraged. Should I be?

I'm going back for another shot tomorrow. I will ask more questions then.

[Zoe's Life]

Elojo,

Yes, be encouragaed. It sounds like your counts are headed up. With MDS counts are often low, but growth factors can help us get closer to normal. Are you noticing more energy from the hemoglobin increase? That is a great response to the growth factor!

Zoe

[elrojo]

It's hard to say whether I'm feeling better, or I've just stopped worrying about it so much. I have a better attitude and I'm not obsessing, and I'm probably feeling better as a result.

[Lisa Z]

It is imperative that you get as much info as you can. And, as anohter person said, go to the experts!! Make sure you do this. YOu need to get a diagnosis so it can be treated correctly. IN the Fall of '07 my doctor found, during routine physical, low red, white and platelet counts. I was initially diagnosed with AA, then MDS. I did a clinical trial at the NIH with campath and have been OK for over a year. My counts are not normal, but they are good enough for me to lead a normal life. You need to be your best advocate and make sure your docs find out what it is you have. Be persistant!

[samster(OG)]

Originally Posted by elrojo

In April I was diagnosed with pancytopenia (low counts on red, white, and platelets) after routine bloodwork. I've been through lots of blood tests, a bone marrow biopsy, and abdominal ultrasound. My iron, folic acid, and B-12 readings are all within normal range. There is no evidence of leukemia cells in the blood or bone marrow. The bone marrow biopsy showed lower than expected level of red and white blood cells, but normal counts for platelets. The ultrasound showed an enlarged spleen. From what I've been able to understand, the tests did not indicate any dysplasia, just bone marrow not producing as much as I need.

The doctor says my autoimmune system may be destroying my platelets, while I am not producing enough red and white cells. I got a shot of growth factor (not sure which one), and he wants me to repeat every three weeks along with routine bloodwork.

I have not received a diagnosis, but he said it looks like pre-MDS. Have any of you heard of anything like this? I'd like to move on with my life, but would like to know how serious this is and plan accordingly.

Have any of you been through anything like this? Waiting for test results is really getting me down.

Everything your describing i went threw already bro at the end i was diagnosed with severe AA this was five yrs ago... 3 transfusions per week for a long time.... my platelets at 50000 now still low but no transfusions yeey! ATG saved me on cyclosporine now calms my immune system... Stay strong and call me if you want to know more I dont feel sick anymore but my blood counts say other wise keep a strong mind and think of this disease like if it were a cold thats never going away it helps trust....this my number 626 435 5684 i live in California SGV my name SAm

[elrojo]

I had a visit with my hematologist this morning. My CBC has improved. WBC is 4,000 which is just barely below normal. My platelets are 110,000, which is below normal, but sufficient. My Hgb is still low at 10.8. We will continue with blood tests every three weeks and shots of aranesp as inidcated by the blood work. We will hold off on any steroid or ATG treatments unless the counts worsen. The doctor says these are good results and that we will continue to monitor.

[susansr]

Originally Posted by elrojo

I had a visit with my hematologist this morning. My CBC has improved. WBC is 4,000 which is just barely below normal. My platelets are 110,000, which is below normal, but sufficient. My Hgb is still low at 10.8. We will continue with blood tests every three weeks and shots of aranesp as inidcated by the blood work. We will hold off on any steroid or ATG treatments unless the counts worsen. The doctor says these are good results and that we will continue to monitor.

Dear Elrojo: I don't know your history but I would say you are doing better than you are giving yourself credit. yes, your platelets are not quite in normal range but you're not that far off! To put things in perspective, I have AA, had ATG in FEB., and my platelets never rose past 30,000. Now, that is a below average number. My Hgb is 8.5, and again you're doing pretty well at 10.8.
Be optimistic, it appears your numbers are going in the right direction. Of course the most important thing is how you feel. I hope well.

[elrojo]

Originally Posted by susansr

Dear Elrojo: I don't know your history but I would say you are doing better than you are giving yourself credit. yes, your platelets are not quite in normal range but you're not that far off! To put things in perspective, I have AA, had ATG in FEB., and my platelets never rose past 30,000. Now, that is a below average number. My Hgb is 8.5, and again you're doing pretty well at 10.8.
Be optimistic, it appears your numbers are going in the right direction. Of course the most important thing is how you feel. I hope well.

I realize my counts are fairly good, even though still outside the range of normal. My hematologist keeps stressing that. In fact, he has avoided using the term AA, although from what I read on the internet, all the treatments he's considering would indicate an AA course of treatment. My cardiologist would like to see improvement in the Hgb count, as that complicates a heart problem I have. Based on the stories others tell, I know my condition is not critical, I just need to be patient and not expect a miracle cure. Thanks for your words of encouragement, and good luck to you.

[elrojo]

Yesterday, I got called back for more injections after my latest CBC. My WBC has fallen slightly, so the doctor has added Neupogen to the Aranesp I am already taking. I hope to see better results with the Neupogen than I have with the Aranesp so far. I guess we'll just take it one day at a time.

[cathybee1]

Just wanted to say that don't be discouraged if the Aranesp doesn't seem to be working right away. My husband started receiving injections in late June, the hematologist discontinued them in mid August (after 6 weeks) because they didn't appear to be working. During the second half of treatment, Neupogen injections were given as well.

I should add that Bruce's EPO levels are in the low 400 range and we were told the odds of Aranesp working were low (like 20%).

Bruce had a transfusion in late August. His counts went up a little, then resumed their downward trend.


But 10 days ago Bruce had another CBC and it showed all his counts were up. A BMB done in late September showed that red blood count precursors had improved. We just got back from a consult with Dr. Paquette at UCLA. He believes the Aranesp is now kicking in. He showed us results of a clinical trial published in 2008 that indicates some patients don't experience results from Aranesp until 3 months in but that in that time period, more than 80% of patients do respond.

He recommended that Bruce resume the Aranesp.

[elrojo]

I don't need a shot this week. My Hgb is 11.8, almost within normal range. I guess the aranesp is working. I'm excited.

[cathybee1]

Originally Posted by elrojo

I don't need a shot this week. My Hgb is 11.8, almost within normal range. I guess the aranesp is working. I'm excited.

Great news!

[elrojo]

Still hanging in there with periodic bloodwork, and aranesp injections. My Hgb continues to be in the range of 10.5 - 11.9. My doctor seems happy with that range. We are not even talking about the WBC and platelets anymore.

My biggest worry now is paying for those injections that run about $4,000 a pop. My job will be ending soon, and COBRA is only good for 18 months. I need to find a new job with medical benefits which is adding to my stress.

[elrojo]

The latest blood work showed Hgb of 12.4 . . . the highest it's been since this whole mess started. Needless to say, I'm very pleased.

[Neil Cuadra]

elrojo,

It's great to hear about your continued improvement on Aranesp. Are you still getting the Neupogen shots too?

Good luck with your job hunt and insurance coverage.

[elrojo]

I did get a second neupogen injection, along with the aranesp two weeks ago. My counts are up and down, from one test to the next. They don't seem to be getting any worse, and maybe somewhat better on average. I'm not getting as many shots as I used to.

Dr. is happy with current treatment, and says we will keep the ATG option for a later time, if counts begin to fall. I'm happy with that.

[Lisa Z]

Welcome to our world; there are many of us here to support you as you go through this roller coaster of a ride called Bone marrow failure. Sometimes it takes a long time for the drs. to figure out what you may have. Then the diagnosis may change...... Make sure you have a decent local hematologist for routhine blood work, etc., but in the meantime, you should try to locate one that specializes in bone marrow failures. "General" hematologists see so many different patients.

Do some research, contact aa/mds foundation, (they will send you lots of literature), and ask any questions that you have. You have to be active in your treatment plan, so you need to learn as much as you can. Get 2nd opinions once they come up with a diagnosis.

So many people here have been through different things, so there is a wealth of information to be had.

Good luck and I hope you end up with fairly good news.

Lisa

[Juli F.]

Elrojo: I agree with Neil, if you are anywhere near or are able to get to HD Anderson please do so. Hutchinson in Seattle and Moffitt in Tampa are two of the other leading cancer centers. Anderson is excellent and I'd try to get there ASAP for a reliable diagnosis. They will work with you doctor if you can't get there to be treated regularly. Accurate diagnosis is the key.

[elrojo]

Back to report on my progress. I still see my hematologist quarterly, and my blood work has been great. All my numbers are within normal range, and have been for the last six months.

In July 2011, I had a brain hemmorhage that required emergency surgery and a couple months of therapy, but all is well now.

[KMac]

Hi El Rojo,

Congratulations! It is wonderful that you now have normal counts. News like that gives more hope to all of us.

Kevin

[Heather8773]

Elrojo
Did you ever find out your cellularity? My husbands first bmb showed 40-50 % which was not in AA range. 3/4 months later a bmb was repeated bc all of his counts were still low. It showed 5% hypocellularity. That is for sure AA. We asked how it could change so quickly. His Dr said, "there are 'islands' in the marrow that have higher cellularity, the first bmb just happened to hit that 'island' but the CBC is consistent w the 5% hypocellularity"
So after the new bmb and flow cetometry test (test for PNH)
His correct dx is AA w PNH overlap syndrome.
His first dr was reluctant to dx AA. Understandable w bmb results.
New Dr is in the Med center. At methodist Dr Larry Rice. He is incredible.
I hope you are continuing to improve!!!!