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Old Mon Nov 28, 2011, 10:38 AM
Darice Darice is offline
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Join Date: Jun 2011
Location: Colorado Springs, CO
Posts: 91
HooBoy, you are a long way from home. And no good support system/family . . . for you or your father. That's tough. Do you know/like/feel comfortable with his doctors? Do they know what they are doing with MDS? I guess I'm a little uncomfortable with his doctors . . . there are a few things that worry me here.

You mentioned age bias and I believe this can be a real problem sometimes . . . his being 83 is NOT a good reason to just sit back and accept death. I have a cousin who is 93 and has just been diagnosed with breast cancer. She has had surgery followed by radiation and they are now discussing hormonal therapy. She has good doctors who are not giving up on her just because of her age. And she is doing good and has quality of life. I have discussed her with our oncologist and he agrees with her treatment.

Related concern is that the doctor(s) seems to have assigned the six-month time table and stopped treatment . . . true? Is your father receiving any treatment currently? How often does he see his oncologist? Hematologist? What medical professionals are involved in his care . . . you really need someone who KNOWS how to deal with MDS. I don't like hearing that the last CBC was in September . . . we are currently going every two weeks for CBCs . . . and it would be more often if something were to start going on . . . numbers dropping more dramatically or something. I don't want a doctor who just gives up.

You mentioned that your father "finished Vidaza in Sept" . . . why is it "finished"? The usual with Vidaza seems to be to continue until it no longer works well . . . but that it can take up to six months to take effect. That is, a patient can continue Vidaza with dropping blood counts (and transfusion dependancy) and no apparent response for six months and then see a result. There may have been some other reason for quitting the Vidaza, but I would question whether it got a fair chance. And there are other treatments that can be considered.

I assume/hope that there was a bone marrow biopsy (BMB) involved in his diagnosis . . . you did mention a biopsy . . . do you have the results of that? If not, get them. And get his doctor to explain them to you. You should know the IPSS and sub-type. You need to know what his CBCs are NOW, not what they were two months ago. You say it seems to be just the WBC and platelets affected, but let's confirm that with a new CBC. The Neulasta injection my hubby is getting is a growth factor . . . it stimulates production of the white blood cells (and with your father fighting staph infections he needs all of those he can get), but seems to also be stimulating red and platelets. And it doesn't come with a lot of side effects. I'd say it's worth a try for your father, but I'm not a doctor. But I would sure ask about it.

I'm probably just overwhelming you with questions, but I really think that you need to look hard at the doctors . . . make them accountable or change them out for new ones. I think it's worth fighting. Let me know what you find out or if you have more questions for me.

Hope your week goes well.
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hubby 73, dx NHL 2001, CNS involvement. SCT (auto) 5/08 [dx UTUC renal pelvis, 2010/surgeries/MMC], MANY recurrences, chemos, surgeries, rad. dx t-MDS 3/11: IPSS 1.5 (Int-2); MDA 11, RCMD trilineage, inc. Fe, ring sideroblasts, 7q del/mono 7 (51.5%), 46,XY,t(6,17)(p22;q25)[4]/45,XY,-7[4]/46,XY[12].
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