Quote:
Originally Posted by LizR
Patti-
It can be so frustrating to try to communicate with the Dr. and his office. Getting answers and having your Dr. take your concerns and questions seriously is so important. Our local Dr. is usually very helpful but on a busy day he will try to gloss over some things important to us that we might not know. We've found just saying "I'm confused", whether you are or not, helps slow things down to get your questions answered. Our Mayo Dr. and our local Dr. don't always agree either.
With the PBRC transfusions, when Bob gets 2 units in the same day, it lasts longer and gives him more energy than getting them on separate days. He doesn't get platelets so that could be a difference from your case but it could be something to try.
I think that's the bottom line. If there is a next thing to try, there is hope and who doesn't want a little hope?
Sending hugs and prayers to all patients and caregivers today!
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Thank you Liz. I found it interesting about 2 units of PBRC. Dean's oncologist probably won't agree to that, but we could ask.
We are still considering the trial study, Dean would like to do it, but he is feeling so weak, he doesn't think he can make it until September. We will speak to his oncologist tomorrow and hopefully find out his feelings.
If Dean can't do the clinical study, then he would like to at least try Vidaza. He doesn't want to give up yet. The doctor at Moffitt told us these are the only two options left for Dean, so he wants to at least try one.
We have our list of questions for tomorrow, and the paperwork for the study, which they gave to us at Moffitt. We will remember to say "I'm confused", because most of the time we are. :-)
Thank you for telling me that your husband's doctors don't always agree either. :-)
Lots of love and hugs, faith, hope and prayers always,
Patti and Dean