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Old Wed Dec 10, 2008, 12:02 AM
Francine S Francine S is offline
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Join Date: Nov 2008
Location: Tom River, NJ
Posts: 10
Smile Thanks for all your responses & update on my mom

First I'd like to thank all of you who responded to my first posting about my 85 yr old mom. The comments you made are all very helpful and encouraging. I commend all of you for seeking information and becoming knowledgeable about MDS and your treatments and for being advocates for your own health. I strongly feel that every patient needs to take charge of their health - ask questions of the physicians, seek to understand and form a partnership with your doctor. I hope I can do this for my mom.

I accompanied my mom to her last appt. with her hematologist/oncologist on Dec 2. Yes, he is recommending Vidaza, gave her patient literature and will meet with her again on Dec 23. He sounded like he was not rushing her into it, but when I had a personal phone conversation with him a few wks before this, he said that if my mom did not try chemo soon, he is afraid we would not have my mom around too much longer. Since October, it seems she is getting 2 units of blood about every 2 wks. Today, her Hemoglobin (Hgb I'll use) was down to 6.6 (it's been in this range before) so in 2 days they expect to have blood ready for another transfusion. The past couple of transfusions get her Hgb above 8.0 but not to 9.0. Only when her Hgb dips below 7.0 does she mention that she may feel tired and gets slight palpitations at times. Usually they get her in for transfusions before it dips below 7.0 but the Hgb seems to be falling more rapidly now and it's becoming more difficult to get blood matched.
I updated my signature with info from the BM biopsy report. I think I am encouraged that her subtype is RCMD, which seems milder than some of the other subtypes, but then again, I see she is transfusion dependent now. She continues to get Procrit every week but I don't think it's having any effect at all.
I plan to have a phone conversation with her doctor before her Dec 23 appt. From the postings I've read it seems that some patients have been getting transfusions for some time but I understand the dangers of iron overload and it sounds like the side effects of some chelators can be nasty. From the responses I've received, it sounds like Vidaza is worth a try and I will question her doctor about the dosing & regimen. I am just concerned how she'll handle the side effects at her age and if Vidaza does not work for her, then will the side effects from Dacogen be worse? (which I will read up on). I also saw postings about lenalidimide/thalidimide so I will read up on these meds as possible alternatives.
Sorry for this long-winded posting! I'm just trying to get myself up to speed so I can talk with her physician before 12/23.
Regards and Thanks to All,
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Francine S: My mom, 85 yrs old, prelim diagnosis of MDS ~ June 2007. Nov, 20, 2008 BM biopsy results confirm MDS: RCMD subtype, 3% Blasts, Hypercellular marrow, approx. 70%; no chromosome abberations; transfusion dependent.
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