Quote:
Originally Posted by Hopeful
Hi Marmab,
It's funny how your viewpoints change. I was also very drug adverse before my disease. It kind of goes with the healthy and active lifestyle. However now I have an even greater fear for tapering off Cyclosporine! Go figure.
The watching-and-waiting is tough! Your counts aren't crazy-low so there is a chance that your marrow will heal on its own. However, if the immune attack gets out of control, you will need drug intervention. Why do your doctors suspect MDS vs something else?
An HGB of 9 is tough when you are use to being active, but usually your body can adjust to it within a week or two. You must remind yourself that your body is battling a serious disease, and it will take time before you are at your previous level of activities. I would just caution you about jumping on the transfusion bandwagon. Transfusions carry serious risks and side effects and should be avoided until you *really* need them. EPO is usually suggested first for bone marow failure patients, assuming your own EPO levels are low, as Greg pointed out. However EPO shots are typically not given if your HGB is 10 or more. So, you may even want to wait on this too.
As an aside, another marker for response to IST therapy for hypocellular MDS patients is a reversed CD4/CD8 ratio. Usually you find this mentioned in your BMB reports.
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Hi Hopeful,
Thank you for your very useful info. I looked on my BMB pathology report for the CD4/CD8 ratio. I see that they looked at CD3, but not CD4 or CD8. What are these exactly (I'm a newbie to all this)? Should they have looked at them? Oh, one more thing. My natural EPO level is 396. My doc said that there was "room" (a count under 500) to try Epogen. Is it worth giving it a try? Seems like my kidneys are doing their thing, trying to stimulate the cells. Does natural EPO get as high as 500? Assuming my EPO stays around 400, maybe I should see if my Hgb holds at 9, or even increases.
marmab
marmab