How did you decide if/when for the BMT?

[mausmish]

My hematologist and oncologist are both urging me to consider a BMT sometime soon. I do not have a related donor. My health is quite good overall with no issues other than the MDS but I am very overweight and not fit at all. My prognosis without the BMT is poor but I'm feeling so good right now with essentially no restrictions and nearly normal blood counts, it is difficult to contemplate this dangerous and pardoxically life-threatening potentially life-saving procedure. The temptation is to wait until I am in a crisis (I'm a big procrastinator anyway) but by the time I know I'm in crisis it already could be too late. I realize that in the end I must choose for myself but I was wondering what the final deciding factor was for any of you.

[squirrellypoo]

Hi Karen.

Is it possible to start the search for an unrelated donor now, so at least you know if a match exists for you and how good the match is?

I'm afraid my experience won't really help you much since my decline was SO fast (first symptoms of anything in October, and being told I need a BMT in January) that there wasn't a decision at all for me, it was "you need a transplant." A life entirely dependent on several transfusions each week isn't really what I call a life. So for me I was just really lucky that there were 3 9/10 unrelated donors on the registry for me.

You mentioned weight, and although I was extremely healthy and active before I got sick (I used to run 10k three times a week and regularly lifted weights), the doctors actually made me gain some weight just before the transplant because nearly everyone loses so much weight through the transplant process because of nausea and mouth sores and have an extra padding is considered good insurance. I was the only one any of the staff had heard of that didn't lose a single pound. *sigh* So I'm not sure to what degree of extra weight you've got, but I'm thinking it's probably not the weight per say that bothers them - it's more likely they're concerned about the extra strain on your heart, kidneys, liver, lungs, etc that a transplant will bring. I don't know what to tell you in this regard because I know how impossible it was for me to exercise when my counts were low, and I love exercising... But you say your counts are near-normal - have you talked to your doctors about trying to lose some weight and strengthen your heart/lungs/etc with the extra time you're buying yourself pre-transplant? (I hesitate to say it because it sounds like advertising, but about 5 years ago I lost about 50 pounds and gained my love of exercise through sparkpeople.com and it's free and devoid of diet quackery. Please please forgive me if this has caused offense, I really don't mean to!)

[One Day At A Time]

You understand the main points. It is a dangerous procedure. It is a life changing procedure. It can also be a curative or long-term remission procedure. Feel fortunate if you qualify for a BMT or SCT, most MDS patients do not. I would suggest that you directly ask your doctors what specific reason(s) lead them to conclude the timing is now. Ask them to help you understand their reasoning. Although you feel well, I suspect the main concern may be the 17% blasts. I am told that timing is very important and it is best to undergo the BMC/SCT prior to the onset of AML. Some doctors consider AML to set in at 30% blasts, but others will say as low as 20% blasts.

Regardless of the timing, you should take whatever preparations you can, such as donor search, finding a caregiver, tour a BMC/SCT facility, etc.

PS - Vidaza didn't seem to be working for me at first. It took a solid 5-6 months, but now my blood counts are mostly normalized. 15 months and counting, but it will be a quick decision to go to SCT when Vidaza stops working.

[mausmish]

No offense taken, squirrellypoo - your suggestions are good ones.

I was submitted for a preliminary match search last month and will get results this week as well as another BMB. I had two when first dx'ed in January, a week apart, first by my hematologist showing 20% blasts and dx of AML, second by my oncologist showing 17% blasts and a dx of AML or MDS (she said it was really a matter of semantics and at this stage would not make a big difference in treatments or prognosis). I'll be consulting with the transplant doc soon at University of Maryland where I'm also seeing my oncologist. I live only about an hour away. My Vidaza treatments showed good results right away but my second cycle had better results than my third. I begin my fourth next week.

[Ruth Cuadra]

There were several things that factored into my decision to have a BMT. I was relatively young (43) and had two young children (11 and 14). I had a fully matched unrelated donor. Although I had unstable chromosomes, I had no blasts so my prognosis was not dire. And, doctors at three different hospitals recommended transplantation. The consensus was that because my bone marrow seemed to be changing, I was better off going to transplant sooner while I was still relatively healthy rather than waiting for things to get worse by transforming to leukemia.

I was feeling well, working, and taking care of my family so, as you say, it was hard to think about giving that up for the rigors of the transplant process. But given my circumstances, my husband and I decided we wanted to go for the cure. I had an advantage that squirrelypoo didn't have in that I had about 2 years to think about the possibility of transplant. When I was first diagnosed and treated for aplastic anemia a donor was located. That was a great comfort. There is a lot to be said for finding a donor before it's an emergency and, as One Day At A Time says, making any preparations you can, including writing a will and ensuring your wishes regarding extreme measures are known to your family, caregivers, and doctors. It was hard to be thinking about end-of-life issues while preparing to fight to survive, but ultimately everything was settled and I could focus on getting well.

Hope this helps.

Regards,
Ruth

[Jill2008]

I was diagnosed in June 2008 and four 10/10unrelated donors were found in the following months. I was supposed to have the transplant done right away, then my counts stabilized. Like Ruth, I have had time to absorb the thought of a life-saving transplant. I also have low blasts and complex cytogenics. With the recent finding of Monosomy 7, it is the recommendation of the entire transplant team at Stanford to move forward with my transplant. I begin full body irradiation on May 4th and chemo May 8th. My transplant day is May 11th. I'm beginning to get more anxious as the day approaches, but I am prepared to fight! I wish you the best!
Jill

[squirrellypoo]

Originally Posted by Jill2008

I begin full body irradiation on May 4th and chemo May 8th. My transplant day is May 11th. I'm beginning to get more anxious as the day approaches, but I am prepared to fight! I wish you the best!
Jill

Oh, I hadn't realised you were going forward with it, and so quickly!! Just don't get your heart set too much on your start date - mine and Vera's were both pushed back at the last minute and apparently that's really common, for any number of donor/bed/resources reasons.

You should start your own thread here in the Transplants section so we can follow your progress.

melissa

[mausmish]

Best of luck, Jill, and please keep us posted on your progress.

Ruth, thank you! Your posting does help.

I had a BMB today (which went well with little pain) and will get the results on Tuesday. I have been scheduled for a consult with the transplant dept. head at University of Maryland on May 13 to discuss my options. I did a preliminary search on the Be the Match site which showed 103 potential 6/6 donors. This is a very high level search but at least gives me an idea that there are potentials out there. I need to do my homework and be ready with lots of questions when I see the doctor next month.

[Laura]

Yes, I agree. You should start your own thread to keep us updated! My transplant was also pushed back a few times. So try not to get disappointed if that occurs.

For me, I had relapsed for I guess you could say the third time?, and I did ATG twice and I had no success, so that is what made me go to transplant. I really didn't have the choice to wait either.

Laura

[Jill2008]

Thanks, I will start a new thread. Just have been so busy preparing. Stanford is four hours from my home. I had a echocardiogram, pulmonary function test and another BMB today. So far everything is right on schedule, but believe me, my heart is definitely not set on going through chemo on Mother's Day.
Jill