BMT to wait ? Or not to wait ? Can't decide

[Nigelh]

hi there , New to this site, I was diagnosed with MDS in 2001 . I am a 43 year old active male, happily married with a 8 month year old boy, I have been struggling with the decision when to go ahead with this BMT for the past 5 years now and just keep putting it off, I have tried Vidazza which did not work and get a blood transfusion about every 3 weeks now, My platelets sit around the 100 mark and white cells around the 1.5 which they have done for the past 10 years now,
I also have been on the international bone marrow regeristry for 10 years no with no success so will have to get a haplo transplant of my sister who is a half match. This causes me a lot of anxiety as I feel like my life is on hold until I get this done, On one side I am enjoying life as it is but if I wait to long it may turn into to AML , but If I go ahead with the BMT it may shorten my life and things might never be the same again, Please can someone give me a little insight so it might help me make my decision at a little easier,

[DanL]

Nigel,

This is the million dollar question that I struggle with as well. I have consulted with several institutions about my situation and almost all of them said the exact same thing - it is important to do the transplant before MDS turns to AML, but other than that, barring other pressing issues, that waiting provides the greatest overall survival. There are a few articles about an algorithm that has been created to help doctors and patients determine when to go forward with transplant.

My thought is that every year I avoid a transplant is a year that they get better and doing them, that better drugs are tested and developed, and the odds of finding a non-transplant cure increase.

Not sure if this helps, but it is another perspective.

[Nigelh]

Thanks so much for your response, I have ask my Doctor about the chances of better drugs or finding a match in the near future, and his response was that it won't change anytime soon, and it would be very lucky if I find a match as my tissue type is very rare and they have not found one in 10 years, I' know I have to do this at one time or another and I know the stronger u are the better survival rate you have, I was up all night thinking about it, it's hard to have it hanging over my head the whole time, Thanks so much for your response,

[Neil Cuadra]

Nigel,

Is your dependence on transfusions a new development or has it been the case for some time? Did you start needing them when you went on Vidaza, long before that, or only very recently? I'm asking because I think it might be an important factor.

[milliken2]

Nigel;
You have so many important aspects to weigh at this point - of course your family is on the top of the list. Speaking from a wife and a nurses perspective - I would want you to be around for the family - but on the other hand, I also want a quality of life for you.
Earl and I have been blessed with 42 years of marriage - and I am continually thankful of the time we have been together. Right now - it is just a waiting game to see of the Vidaza kicks in. He had been on Revlimid, but the Dr. stopped that after he had a CVA - cerebral vascular accident - or stroke. We are to see him tomorrow for a regular checkup, and to see if we should start the Revlimid again. I am very hesitant about starting it since when he was on it, his counts were terrible. And a side effect of Revlimid is possible stroke. Right now - he had no visual signs that he had a CVA - but he is weak on his right side, and tires even more easily.
This is a decision you and your wife should discuss thoroughly. I do know that Earl is not eligible for a BMT due to his age and other co-morbidities, but if he were younger and healthier - we would go that route. Understand that when you do have a BMT - your entire immune system has to be killed - and this weakens you a lot - then you have a period of time that they monitor and medicate you to make sure you are 'receptive' to the new marrow. And then the process begins. One thing I would caution you about is that you have a new young child - and I am sure you want to spend a lot of time with him/her. Kids - and not of their doing - are 'germ getters and givers' and you would have to be very careful so as not to put yourself in an infectious state.
Either way - good luck to you and your family. I wish you all the best no matter which decision you make.
Beth

[Nigelh]

Hi Neil
Yes I started being transfusion dependant at the end of 2011 and started Vidazza in February 2012 , I gave it a go for 8 months, During that time I had 20 blood transfusions , developed pneumonia , and spent 1 month in hospital with 2 other infections , when I finally decided to go off the trail my counts did go up and my hemoglobins got up to 10.1 , this quickly came down in about 4 months to about .8 , so again now I am transfusion dependant again, about every 3 weeks I need to go in, Which means my energy levels are good for about 15 to 20 days then I feel like I'm very weak again. So it's hard to work and pretty much lie around a lot. Very keen to hear your reply , thanks so much
Nigel

[Hopeful]

Hi Nigel,

What led your doctor to give you a MDS diagnosis? What type of MDS do you have? Do you have excessive blasts? Are you being seen at an MDS Center for Excellence?

I am asking because you are young.

[Neil Cuadra]

Nigel,

I understand how you feel you're in a holding pattern and can't get on with your life with this hanging over you, and I wish the right choice was clearer. It's wise to gather all the information you can, and opinions from other patients can help, but ultimately the most important voices are your own, your wife's, and the doctors you most trust.

If you could live with low counts without needing treatment of any kind, I'd be inclined to favor waiting a bit longer in case you find a better match. I think that having a young son is another reason to wait a bit longer, but the long-term outcome is more important than the short term, and that against favors treatment over wait-and-watch.

I wouldn't wait just because transplant techniques and success rates improve over time, since that's a slow process. Waiting also runs the risk that your sister could become medically unavailable for one reason or another.

The need for transfusions is the main factor that would lead me to favor a transplant in your situation. It's not a sustainable condition for life and statistically a history of transfusions reduces transplant success rates.

If that's the #1 reason for a transplant, the #1 opposing reason is your lack of a better match. I'd be quite concerned having nothing better than a haplo match, and I think those two factors are what put you in this dilemma. I don't know what the statistics show for haplo transplants, especially for those in your age group, and you can't trust statistics based on data from years past to represent your current chances of success very accurately. However, if it was me I'd ask the treatment center or a national agency to provide me with whatever statistics they have, to give me a better basis for considering or rejecting that choice. We know that a close match from an unrelated donor would be better than a half-match, but how much better?

Is the Australian Organ and Tissue Authority the agency that's been searching for a better match for you? [Correction: It's the
Australian Bone Marrow Donor Registry (ABMDR), as Sandi points out below. Thanks for correcting this!] Do you know for certain that all of the international registries have been searched, not just your national registry? If you don't mind my asking, were your parents from very different backgrounds, and that's the reason for your rare HLA tissue type? Or are your ancestors from a small community? I'm wondering if with enough effort, backing, funding, support, and publicity you could get a number of bone marrow registration drives going among certain geographic, national, or ethnic communities. That's what Krissy Kobata is doing with her search for a donor among those with the same mixed ethnicity.

You didn't mention trying other drugs. Has your doctor suggested that?

[MDSPerth]

Originally Posted by Neil Cuadra

Nigel,

I understand how you feel you're in a holding pattern and can't get on with your life with this hanging over you, and I wish the right choice was clearer. It's wise to gather all the information you can, and opinions from other patients can help, but ultimately the most important voices are your own, your wife's, and the doctors you most trust.

If you could live with low counts without needing treatment of any kind, I'd be inclined to favor waiting a bit longer in case you find a better match. I think that having a young son is another reason to wait a bit longer, but the long-term outcome is more important than the short term, and that against favors treatment over wait-and-watch.

I wouldn't wait just because transplant techniques and success rates improve over time, since that's a slow process. Waiting also runs the risk that your sister could become medically unavailable for one reason or another.

The need for transfusions is the main factor that would lead me to favor a transplant in your situation. It's not a sustainable condition for life and statistically a history of transfusions reduces transplant success rates.

If that's the #1 reason for a transplant, the #1 opposing reason is your lack of a better match. I'd be quite concerned having nothing better than a haplo match, and I think those two factors are what put you in this dilemma. I don't know what the statistics show for haplo transplants, especially for those in your age group, and you can't trust statistics based on data from years past to represent your current chances of success very accurately. However, if it was me I'd ask the treatment center or a national agency to provide me with whatever statistics they have, to give me a better basis for considering or rejecting that choice. We know that a close match from an unrelated donor would be better than a half-match, but how much better?

Is the Australian Organ and Tissue Authority the agency that's been searching for a better match for you? Since they haven't even existed in their current form for 10 years, do you know for certain that all of the international registries have been searched, not just your national registry? If you don't mind my asking, were your parents from very different backgrounds, and that's the reason for your rare HLA tissue type? Or are your ancestors from a small community? I'm wondering if with enough effort, backing, funding, support, and publicity you could get a number of bone marrow registration drives going among certain geographic, national, or ethnic communities. That's what Krissy Kobata is doing with her search for a donor among those with the same mixed ethnicity.

You didn't mention trying other drugs. Has your doctor suggested that?

Hi Neil

Think this is more likely the Australian marrow body http://www.abmdr.org.au/.

Things in Australia seem to move a lot slower than in the USA - but then in general, we are probably behind the rest of the developed world in the number of people willing to donate organs

Paul was told he his HLA typing was not unusual, but here we are six months out and still looking - patience is a virtue.

Good luck with the hunt Nigel.

Regards
Sandi

[Neil Cuadra]

Originally Posted by MDSPerth

Think this is more likely the Australian marrow body http://www.abmdr.org.au/.

Thanks for spotting that, Sandi. I fixed my post above.