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Originally Posted by Al's Wife
Patti,
I have been where you are and I know how frustrating and scary it can be. I think most criteria for giving PRBC transfusions is under 8.0 but they always give Al 2 units. He takes Amicar for clotting and has lived with platelets under 10 for a year with no bleeding problems, thank goodness.
We go to a local oncologist now and he actually listens to me and twice he followed my suggestions. One, he put Al on Dacogen and, two, after keeping Al stable for several months I asked him if he thought lowering the dose and seeing if he stayed stable would be a good idea. I had read on the Internet where that worked for elderly patients and was less toxic. So far it has worked for us! But I'm not naive to think it will work forever. Just taking one day at a time.
If the clinical trial Moffitt is talking about is the one I read about Online it actually cured the mice of cancer. Of course they have no way of knowing if it will be safe and work until it's been through years of trials.
I am so praying that Dean and you will find peace with whatever decision you make.
This disease is so terrible on our loved ones and on us. Al is not the same person and he is ALWAYS tired but manages to keep going. He does take a lot of naps which he NEVER did before MDS/AML.
Keep in touch,
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Hi Linda,
Dean is at the hospital right now, receiving PRBC and platelets. He woke up early this morning so weak that he couldn't get to the bathroom without my help, and his breathing was very heavy.
I drove him over to the emergency room, and thankfully after doing a CBC, and talking to his local oncologist, agreed to give him the transfusion. He will be there a few hours, when I left to come home to take care of Pebbles, he was sleeping.
The clinical trial (17280) that Moffitt spoke to Dean and I about is not posted yet. It really isn't going to begin until the middle of September or later. Dean is not sure he will be well enough to do the trial by then. He has to have another BMB, physical exam, and blood work to see if he would qualify, and he doesn't know if he has the strength to go through that. He just had a BMB the beginning of July, but Moffitt would want him to have another one if he decides to go into the trial.
I think Dean would rather try the Vidaza, instead of sitting here waiting and wondering. His last treatment with Dacogen was the end of May, and he is going downhill so fast since then.
Dean has been getting Procrit weekly for the last four weeks, but Moffitt said he has to discontinue the injections immediately if he decides to take part in the trial.
He is so very weak and tired. Our oncologist here doesn't seem to understand how awful Dean feels. At least the oncologist, Dr Lancet, in Moffitt acknowledged Dean's symptoms and said he should be having transfusions based on his symptoms not his numbers.
We have an appointment with Dr. Miranda, Dean's oncologist here, on Monday. It will be interesting to see what he says. Dean wants to ask about beginning Vidaza. If Dean were to go through the tests at Moffitt that are required for the trial, and then didn't qualify, it would be another month of waiting and nothing being done.
Seeing how Al has responded to Dacogen, after trying Vidaza, gives Dean hope, and that's all he wants right now.
Thank you Linda for giving us the hope and encouragement to keep going. We need that so much right now!
Lots of love, hugs and prayers to you and Al.
Patti and Dean