Transplant

[Arlene]

It has been a while since I have posted. My husband was dx 5 years ago with MDS – put on cyclosporin and did well until the last year. He rec’d campath chemotherapy last year through a clinical trial from the NIH, but it did not work. He now is getting transfusions every 3-5 weeks and the MD wants to do a transplant. He was evaluated 5 years ago and his sister is not a match, but they did find a good match out there for him. From the research I have done a non-matching donor is NOT A GOOD THING and should be avoided. He is 64 years old and in very good health – except for his blood. Is there anyone out there who has had one and had good results?

[simplistic007]

I am very sorry to hear about your husband. I was just diagnosed with MDS in April, 2010. I have an appt. next week to find out if I am going to have to go through allogeneic transplantation. I am confused, scared and can’t wait for next week so I know where I stand. There are a lot of knowledgeable people on this forum and with transplantation experience. I am sure someone will give you some answers to your concerns and be there for you. Please keep us posted. God Bless you and your family.

[Mary4Mike]

Arlene,

Do you mean a non related donor is not a good thing? Your best chances are with a related, perfect match. Your next best outcome is with a non related perfect match. My husband had his transplant at 64 and he was in good health except for being TX dependent every other week. He felt like he was just existing, no energy, and never got a boost from the TXs anymore. We were also told that eventually TXs don’t work, your body begins to reject them. He was having chromosome changes and they couldn’t tell if it was from the chemo treatments or from disease progression. We felt it was time if we were ever going to do it. He wasn’t getting any younger and either was his sister who is older than him. We did not want this to transgress into leukemia where the chance of good outcome goes down. And to be perfectly honest, if this "health care thing" goes through, we were afraid that perhaps he would be looked upon as too old and not worth the expense. This is an expensive proposition and we have been blessed with exceptional health insurance through my husband’s employer. We felt it was now or never. We thank the Lord everyday that we went for it and that he chose to bless Mike with this healing.

All the best to your husband. I will be happy to answer any questions if I can.

Mary

[Arlene]

Thank you for your responses. I so happy your husband’s transplant was so successful. My husband’s transplant would be an allogeneic transplant as he has no other family to test. AA-MDS foundation had a webinar with info on transplants and basically said transplants for MDS have around a 1/3 chance of not surviving the transplant, 1/3 chance of have complications or relapse of the disease within a year & die – so it is a hugh risk for a 33% chance of survival and we question the quality of life after transplant.

As you can see – we have great concerns about transplants. That is why we are asking to talk to patients or patient’s families who have had both type of transplants – auto vs allo. He is going to try Vidaza until he makes his final decision of whether to go for a transplant or not.

[Mary4Mike]

Arlene,
Mike’s transplant was also allogeneic. Autogulous is when the patients own stem cells are harvested and then given back. These were basically the same statistics that were given to us about survival, but we were also told that is an average. Some transplant patients are virtually at deaths door, completely run down and are willing to try transplant. They don’t have as good of chance of survival and therefore bring the statistics down. Going into this without other health issues i.e. diabetes, heart problems, weight problems, smoking, etc also gives one a BIG advantage. No blasts or multiple chromosome abnormalities helps also. Don’t dwell on the statistics too much. The transplant centers have this down to a fine art and they do share info amongst each other. In some ways it comes down to quality of life. After having done Vidaza, Revlimid, and Dacogen Mike had run out of options. Transfusions everyother week were vital, however, he never felt better. He was to the point of saying that he did not want to live the rest of his life feeling this way. He still worked, thankfully, mostly from home. We ate out, went on vacation, but everything was a chore. He derived very little pleasure from life and he slept ALOT. He was hospitalized 3 times due to nadirs from Dacogen, once with pneumonia while we were in Florida on vacation. Vidaza was the only thing that did anything to help him. He was able to go 12 months without TX, but he didn’t feel GOOD. He feels GOOD now. It is a very hard and scary decision to make and of course we discussed it at length, but the decision had to be his to make.

When Mike was first diagnosed, (10 years ago) we were told that transplant was the only cure and this is still true today. We looked at each other after hearing the statistics and said NO WAY will we ever do THAT! That was when he still felt good. Over the years that obviously changed as things progressed. We have learned to never say never. He made the decision one year ago, put it in the hands of the Lord, and went forward. We have never looked back. Yes there have been graft versus host issues and you just deal with them as they come up. His have been dry eyes and dry mouth and those seem to be resolving. Mike said if this is the worst thing he has to deal with, no problem.

Do your research on this, talk with your doctors, pray about it if you are so inclined and then make your decision. Either way you go with this, you have to have peace that you have made the right decision for you and then don’t look back.

Mary

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