BMT sched/Vid. not working

[Anne Yeomans]

Hey Everyone:

Well BMT is great news, saw doc on Friday and found out results of BMB. My Blasts of gone from 5%, 2 mnths ago, to 13.4%. Blood transfusions are about every 9-11dys. Last transfusion was tuesday, HMG on frid. 11.6 which is great. Last one didn't seem to take. It was on a friday, before Moffitt, and on Tuesday it was only 8.2. Has this happened to anyone, where it didn't seem to bring up your counts. Just hope Vidaza keeps me below 20%, really don't want to do induction. Don't know if I can handle it. Would like any input that anyone has. Not sure where I stand now. I know Dr. Field wants to do anyother BMB when we do the pre-transplant eval. So I guess just take it a day at a time.

Anneg
God Bless

[Al's Wife]

Well, Anne, sorry about the blasts going up. We're going through the same thing but my husband has only had to have transfusions during chemo. We're hoping for some answers, suggestions, support or anything positive when we go to Moffitt this Wednesday for our first visit there.
All any of us can do is take it one day at a time.
God bless you as you continue on this roller coaster journey.

Linda

[kris]

First take a deep breathe. Exhale......
I am sorry your MDS is not responding as you might like it to the Vidaza. As I have written before Rick was very lucky that the Vidaza did help his counts for 25 cycles. 2 years to get a handle on our emotions and plan our future. Then the transfusions began again and then three line cytopenia, fungal pneumonia, GI bleed, platelet refractory and frustrated, fatigued and very weak. He is a fighter and refused to give in, he scheduled naps, keep a regular scheduled day (up at 6 to bed no later than 9) and ate frequent small meals to keep his nutritional level up. Some days it was all he could do. But do it he did. No self pity.
Most importantly we planned. We saw one BMT team which said he was too sick and his quality of life would be terrible. We saw a second who reassured us there still was HOPE and gave us faith in the future. Moffitt Hem/Onc was our third eval and they referrred us to "Dr A" and his team at Moffitt BMT.
We wish we had gotten to Moffitt earlier than we had. Better to be evaluated early and have time as an Allogenic SCT doesn't happen overnight. I do believe the Vidaza kept his blast counts down.

At Moffitt everyone becomes part of a caring team. No one person does it alone. There is the MD, Nurse Practioner, Physcian Assistant, Pharmacists, RN's who work closely with your Dr, Social Services, Financial advisor, clinical assistants and the host of compassionate , Clinic RN's who truely know what they are doing and can convey that knowledge. There are always words of encouragement, hugs, jokes when appropriate, and they all love what they do. No question goes unanswered and you are a participant. We have never felt rushed. The important thing is the patient needs to be as committed as the team. I can not emphasize that enough. it is not enough for everyone else to be committed. There is someone to call with questions and concerns at any hour. I have Rick's MD's private number in case of emergency, that speaks volumes.

That all being said. BMT has it's disadvantages and struggles. We received a three ring binder filled with information. We received additional information along the way. The best advise was no matter how weak or tired to keep moving everyday. Walk, stretch, move....and it helps.

So another deep breathe, stretch and know if you have questions, need support, encouragement you are at the right place.