Thread: Scared
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Old Thu Apr 26, 2007, 08:24 PM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
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Just based on what little you've told us, I can already see that you're not getting the whole story from the doctors. First they say he's only got a couple of years and there's nothing they can do, and then you mention that that his siblings have been tested and two of his brothers are a match, but that they want to wait and not do a transplant now.

If he has 2 good sibling matches then it's not true that there is nothing they can do. The fact that they want to wait sounds like it means that they think it may not be necessary, which is also positive. If he were really out of options they would probably be talking up a BMT right now.

I understand your frustration with waiting, but let me tell you that a transplant is not something to be taken lightly. It is a long, difficult and risky process, particularly for anyone over 40. Not something you want to rush into if there are other options. That's just my opinion. My husband is 54 and we would do a BMT only as a last resort. Our doctor says that they can still do them for MDS patients into their 60s if their overall health is otherwise good, but that is something that would have to be evaluated by an experienced transplant doctor. Some questions you might want to ask are if their reasons for wanting to wait are based on concerns about his health and ability to withstand the procedure, or is it more that they think there's a chance he can live a normal life without it. If it's the second one, then that's good news.

As to reading the CBCs, our lab gives some slightly different figures than June's for normal range:

WBC (white blood count): 4.8-10.8
RBC (red blood count): 4.15-6.10
Hgb (hemoglobin): 12.5-18.0
Hct (hematocrit): 37.5-52.0
Plt (platelets): 130-440
ANC (absolute neutrophil count): 1.8-7.5

Our doctor (and it seems like the doctors of most other people here) just focuses on certain of those readings: Hgb, WBC, ANC and Plt are the most important ones to know for these diseases.

So going by what you've said, his WBC of 10.4 is in the high normal range, as are his neutrophils at 6.7. No worries there, unless he has excess blasts (young blood cells that don't mature properly), which should be on your list of things to ask them about.

It can be a bit confusing sometimes because different labs seem to put the decimal point in different places. I'm assuming your lab's Hgb 115 is equivalent to our lab's 11.5 (otherwise he'd have been dead long ago! ). That's is a bit below normal, but still a liveable count. There are many people here who get by just fine at that level and lower. They generally like to give RB transfusions if it drops below 8.0, but that can vary from person to person. Hemoglobin is what carries oxygen, so low Hgb might make him feel a bit tired, but most people don't feel symptoms or have problems at 11.5.

Platelets at 39, again, below normal but not dangerously low. There are people here that have adjusted to Plt counts of 10 or less with no problems as long as they are careful to avoid injury. They usually transfuse Plts below 10, but again, that's an individual thing. What they look at is at what point do you develop bruising or bleeding issues, since platelets are what help the blood to clot and stop bleeding. Anything above 50 is generally considered "safe", and he's not quite there, so he should avoid the type of activities that could easily lead to injury, but not worry about normal physical activity.

Counts do fluctuate from week to week, but generally speaking, those are not dangerous counts, and the body has a remarkable ability to adapt itself to lower than normal counts, just ask anyone here. If he can maintain counts like that indefinitely and if nothing else is going wrong (those are big "ifs"), then he should be able to live a normal life without further treatment. Two things that can affect his ability to do that are if he has any chromosome abnormalities and if he has excess blasts, so those are things you want to find out. The first one can lower his life expectancy (a lot will depend on which one it is) and the second could be an indication that his MDS is moving towards leukemia. Both of those things could be reasons to consider a transplant, but if he's stable I wouldn't push it. If you can find out what category of MDS he has there may be others here who share that diagnosis and who can tell you more about what that means.

I'm sure I have oversimplified a lot of things here. I am not a medical professional, and I don't know as much about the different types of MDS as some of the others, but I hope this will at least help to put things into perspective for you, and give you an idea of what kinds of things you need to find out.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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