Upcoming BMT

[AngieA]

My husband was diagnosed in May 2012. Although he had been very sick for about a year and a half before MDS was confirmed. He has had 10 dacagen treatments with a little improvement. He is still transfusion depedent for RBC although not as frequent in the beginning, his white cell count stays below 1.0 however is platelets stay pretty good. He's only had one platelet transfusion.

The hematologist started talking BMT in January. We saw the transplant doctor in February and they already found 4 donors. One of which is willing to complete the process and is rated a 9.5 match which I gather is very good. They want to schedule the transplant near the end of March. We were orginally told this process takes about 6 months. Don't get me wrong, I am very glad they found a donor so quickly, and that donor is willing to do this for a person they don't even know, but it made my heart stop when we got that call. It scares me to death! My husband was a little hesitant, but has accepted the idea and even anxious to get on with it.

I was wondering why so many people here that have had this disease for several years have not had a BMT. Just curious if this is an option to most and because of the high risk factor people mostly decided not to do it. The doc said there was a 40% mortality rate in the first year after the BMT. Very scary to the both of us.

[TammyB]

I am not sure where you are, but in Manitoba you have to wait until you have tried all other meds if any. I was told only 2 MDS patients a year get transplants here. Age is also a factor, after the age of 70 they do not do them as a rule here. I was diagnosed in Oct 2008 and I am just now in the process of getting that started. I actually see the Dr later today and hope I will know more.

[Calimom]

My mother has had MDS for 5 years. Because of her age she is can't get a BMT (she was 75 when she was diagnosed). Since then they've watched her numbers carefully and she's gotten Procrit/Aranesp injections. Today she has her second blood transfusion in two months.

Congrats on finding a match! Until this disease hit I'd never thought much about marrow donors or blood donors!

[MDSPerth]

Besides age, my understanding is it could also have something to do with the patients IPSS score which is broken into Low, Intermediate 1, Intermediate 2 and High. It is not the general treatment for MDS patients who fit into the Low and Intermediate 1 category, because their life expectancy out weighs the risks one takes with transplant. However, patients with Intermediate 2 and High have a lower life expectancy and therefore it is considered that the risks involved in transplant may give them a better prognosis.

Do you know what your husbands IPSS score is?

[Cheryl C]

Yes MDSPerth - that is my understanding too. I was Intermediate 2 to start and it was all systems go for a transplant, but when my blast cells dropped spontaneously putting me into Intermediate 1 it was no longer an option.

[Momhope]

cheril,
how did they drop? did you did something to made your blast count drop?
..

[Momhope]

we are in the same situatiin, my mom is hig risk and eventhough she looks great here only option right now is to have BMT we just saw a second transplant Dr today and he told us that the only way my mom can leave 5years from now is by having a BMT ,he also give us the same survivor % and that she will be in a lot of heavy med after transplat.. he did say that there is a lot of risk with BMT but without it my mom could only leave for 12months.. so in a situation like this you decide. on the one that give the better chance eventhough the % is low.

[milliken2]

Angie;
My husband was not a candidate for a BMT first of all because of his age - 66 - and also because he had other co-morbidities working against him. He had 2 other auto-immune diseases - Antiphospholipid Antibody Syndrome and Leukocytoclastic Vasculitis. We were actually told by Dr. Mikkahl Sekeres at the Cleveland Clinic that his MDS might have been a result of two of the meds he was taking - one from each disease. But the damage was already done.
The preparation leading up to a BMT is difficult at best - and your entire immune system has to be destroyed so that the new marrow will make its own. But I do know this - if Earl had been able to have a BMT - I would have stood by him and encouraged him to do it. Ultimately - it is your husband's choice alone. Good Luck to both of you - whichever road you take.

Beth

[SLB]

I agree that it blows my mind someone out there is willing to do this so you can live. I understand the fear, very much a constant worry for me at the moment heading into my transplant scheduled for 6th of March. However definitely go for transplant before mds transforms to aml. I am interested in mortality rates they quoted in Australia I was told 20% die, 40% relapse & 40% cured with potential GVHD. Last percentage I was told was 20-30% mortality before the dr said "sign here to waver liability". Good luck with your decision. However I guess in scheme of things still better than 100% chance of not seeing the year out.

[kris]

First, as a wife and caregiver I know the road you are traveling. Take care of yourself.
Second every MDS patient is different, the course of their disease is different and the decisions are made for different reasons.
My husband was at DX 2006, supportive care for 2 yrs, and then Vidaza whiched worked for him for 2 yrs. When it stopped working it was as if the electricity had been turned off. He started a spiral down hill. There were no clinical trials, no other drugs just transfusions. Luckily he had 2 siblings that were a match. He had a GI bleed and fungal lung infection the month prior to transplant. Transplant was delayed till the infection was controlled. He was under weight, weak but his mind was determined to push through. He ate even when he didn't want to, nor had the energy to lift a fork. He walked when all he wanted to do was stay in bed. He followed every order, took every medication and endured my incessant reminders that this too shall pass. That was 16 months ago. Today he excercises at the gym and my husband has returned. Full of life, joy and eager for adventure. No, it wasn't an easy path. The alternative.... plan a funeral. Yes, he entered the hospital with affairs in order. Yes, the odds in Vegas are better. When you have everything to gain and nothing to loose it is time to go for it. Survival is a wonderful instinct. It is not one day your sick then your well. It is a years journey to get back to normal. I am so grateful to the Dr, medical team, nurses, his sister/donor but most of all his spirit. I am grateful for these months together.
This is why he decided to go to transplant, (allogenic stem cell/sister).

Our best to you and your family.
kris