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Old Tue Nov 29, 2011, 01:31 AM
Darice Darice is offline
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Join Date: Jun 2011
Location: Colorado Springs, CO
Posts: 91
Yep . . . fine line walking . . . fathers and doctors and daughters trying to help deal with medical issues . . . yikes! It's real tricky to switch that role around to the point where you can advise and help him on medical things . . . and you may have to trick him somehow for his own good.

My understanding of Vidaza is that it may take six full cycles before it starts to take effect and show an improvement in the blood counts. Your father's doctor gave up way too quickly. But there are other options, too. Fatigue is common with any cancer and any cancer treatment . . . again, not a reason to give up. If your father is going to church and out to lunch I just don't think he's ready to roll over and die. Ask him if he's up for a good fight and give him something to live for.

I'm sure that the Neulasta isn't a usual first-line defense for the tMDS . . . but it's working for us. Neupogen and the newer Neulasta have been around for a while . . . and used with MANY cancer patients (not just blood cancers) undergoing chemo. Low blood counts is a common side effect of chemo, and Neulasta (or Neupogen) is used to help boost white blood cell production. There is another drug to help boost red blood cell production, but we've never tried it. Somehow the Neulasta is working to boost red, white, and platelets for my husband . . . and it's keeping him at OK counts with no side effects and no transfusions. Might not work as well for your father, but what have you got to lose in trying?

I don't think you have mentioned whether your father has had transfusions? If you read on the forum here, you will find MDS patients who have had hundreds of transfusions to keep the MDS at bay. Not without its own set of problems, of course, but just another way of coping with the MDS.

I'm sure there is a hospice doctor on your father's hospice team. He's not going to be an expert in MDS, but he might be someone you could easily talk to about it . . . and you could enlist his/her help in explaining some of this to your father and encouraging him to seek a second opinion or to get more aggressive with his own doctor and demand further treatment if he is still unwilling to change doctors. Might come better from a doctor than a daughter. Sigh.

I'll be real eager to hear the CBC results . . . and the BMB results. Our BMB results went on for five pages and it's pretty intimidating at first, but get in there and ask questions. Currently Jens' platelets are over 100,000 (miracle of miracles), but he has spent a LOT of time around 9,000. Your father's 29,000 is low, but lots of people here are probably working with fewer platelets and doing OK. His WBC is also low, and that makes him very susceptible to infection . . . like staph. There are lots of sites explaining blood counts where you can read up on the different results. Do call and ask for the CBC results . . . we always get ours in about 15 minutes . . . while we're sitting in the office . . . so they should have results pretty quickly.
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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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