My dad decided against the transplant….

[katiebear]

My dad was diagnosed with RAEB2 in March of this year. His sister is a perfect match for him. Today was supposed to be is last visit to Sloan before the transplant which was scheduled for the 16th of this month. He decided this weekend after much consideration not to go forward with it. On one hand, I can’t tell you how relieved I am especially after following along with Dennis’ journey. I’m just wondering what this means for the future. I just hope they keep him on the Vidaza and it keeps working for him. I guess that’s it. Thank you for listening.

Katie

[KWJ]

Why did he decide not to do it? Just curious, my dad is going to the Hutch for the same thing and I am terrified as well after Dennis but don’t know what else is there?? My dad has RAEB2 as well, he is at 12% blasts, transfusion dependent, sleeps all the time.

[pierre]

Just thought I would speak up here and let you know that my mother had her (mini) transplant 3 months ago and so far (knock on wood, salt over shoulder, etc.) everything is going as well as could be expected. That’s a pretty remarkable comment on what medicine can do in 2006, when you consider her age and initial prognosis. (Not to say there wasn’t much, much luck involved as well.)

What happened to Dennis was terrible and sadly, not out of the ordinary. But it doesn’t give a full picture of what you can expect from the procedure, either.

Pierre

[Suzanne]

I decided against a transplant before the results of my one sisters blood tests were back after visiting with a friend who had a transplant at the Hutch several years before,seeing what he was dealing with when his transplant was a success, reading the material I was given and found and seeing what transplant patients on the forum were going through. My Doc at Hopkins did say that if my sister had been a match he would have urged me. Luckily the final decision was made for me when she did not match. I live alone and the idea of having to go live with one of my children for a least a year,subjecting my grandchildren to a front row seat for a serious illness, dealing with all the side effects, and taking tons of medications for the rest of my life, provided I survived the process just did not feel like the right direction for me. They have made a lot of advances in the transplant process since I was making the decision-However it is still seldom an easy road with no quarantees. Things worked out for me-Not going for a tranplant does not necessarily mean giving up or settling for supportive care. I had the two rounds of heavy chemo and a year of experimental medication (all of which did not effect my quality of life too drastically- not that there weren’t a few problems with that road too) and I have stayed in remission so far. Living totally normally on my own in my own home-all counts within acceptable ranges and taking no medications other then a small dose of Lipitor started this year for high colesterol. I suspect it is normal to be really nervous about the process and family and friends certainly want to help support someone past fear. But if their “gut” tells them it isn’t the way they want to go-then I can tell you I was very glad that my family supported me in that decision. And made it as easy as possible for me to follow my instincts and deal with the disease on my own terms. We are all glad that I didn’t give up and that I had Doctors at a Center of Excellence that offered other alternatives.

[katiebear]

Okay, I guess I spoke too soon. As I was making my post yesterday my dad was at Sloan telling them that he wasn’t going to do it. Well, he called on the way home, and I guess his doctor urged him, because now he is going to do it. She must of put alot of his fears to rest yesterday. He’s afraid of the chemo. They are using a combination of 3 drugs that have never been used before together which is his main fear I think. They wanted to do it the 16th of this month but he got them to push it back to sometime in November.

Pierre, how old is your mom? My dad will be 66 this month. He’s pretty lucky, because he hasn’t gotten any infections, and he feels generally pretty good. Thank you for responding. I really appreciate the support.

[pierre]

Katie,

My mom is 69 years old.

Be sure to remind your dad that a perfect sibling match is a blessing. My mother had a perfect match in her brother. Also–transplant chemo is tough but usually short as well.

Please don’t hesitate to ask me any questions.

[Author]

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