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Old 06-13-2012, 11:59 AM   #12
jml
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Join Date: Dec 2006
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Re: Myelodysplastic Syndrome - Robin Roberts...now I'm feeling nervous

Thank you everyone for your reassurance and compassion, and Brenda, for sharing your detailed 1st hand experience.
Another friend who is a pathologist & head of the blood bank at the cancer center where I'm treated (whenever I need a transfusion she makes sure I get "good blood" = 1 donor, preferably young!) helped put things in perspective also.
She pointed out that I have only been on this chemo break for 3 weeks, after 10 years of treatment, the past 3.5 being almost continuous, so that's not nearly enough time to jump to the conclusion of MDS or even warrant a bone biopsy asap.
In contrast, Robin Roberts completed her treatment ~5 yrs ago and her bone marrow still doesn't recover, and that truly chronic state would be reason to search for the cause.
Clearly the syndrome isn't dose related which confuses me; I wonder if it's drug type related?
Per your suggestions, I'll just tuck my fears away and focus on fighting the good fight, albeit a little more lethargically these days.
Brenda - my Hgb also hovers in the 9-10's, but has dipped as low as 6.4 a couple of years ago. The past 2 times I got whole blood my Hgb had dropped to 7.3, and then 5 weeks later, 8. I miss having that extra pep in my step and always feel like I could use a triple shot of espresso to really get the day going.
My platelets have been as low as 30, but are now steady in the 80's. Honestly, I'm a little shocked that I don't catch all the different bugs that I hear others suffering from, but I do think being neutropenic makes me feel crummy.
I get labs & Vitamin H tomorrow and am crossing my fingers that my counts have come up enough to resume the Cytoxan & Methotrexate. Scans are coming up and I don't want to go untreated much longer.
Too nervous.

Thanks again friends!

Keep the Faith~

Jessica
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