Should My husband have a BMT?

[Doug C.]

My husband was diagnosed with MDS (RAEB-2 with excess blasts) in October, 2012. Since then he has been receiving Vidaza and just completed his 10th round. Our local oncologist and the doctor at the Cleveland Clinic have suggested a bone marrow transplant. How does one decide to have this procedure when all the statistics are so scary. We are struggling with this decision. Can anyone help?

[gramous]

Hello,

this is the problem of the patients who have mds and the chance of having a donor.
How old is your husband?
Here in Belgium, the practicers perform mini transplant for older people (->70 years old). For a high risk myelodysplastic, it's approuved that transplant can given a longer survival that best supportative cares... In fact, vidazza stop always to work ... but no one can know when....
The results are better when the patient is in remission.
It is normal of being affraid when you see the statistics but you should not forget that the results are better and better each year and that the last statistics doesn't show that...
The decision is hard but transplant is always now the only solution for beating mds.

Sorry for my bad English.
Friendly regards

[susanML]

Hi - I am going thru the same situation right now - except I have already tried just about everything available for treatment for MDS. What really scares me now is the thought of not being able to have a transplant due to too many problems - or the fibrosis w/the MDS and blasts. If I had a choice and the situation was different I would have went for the transplant when I first got real bad 10 yrs ago and had the ATG but times were different and there wasnt as much success as there is now. Take all the advice you can get and weigh everything thru.

[DanL]

To transplant or not to transplant, that is the question, that most of us struggle with. It is really good that your husband has gone through 10 Vidaza cycles. There have been a lot of good studies about optimizing the timing of transplant based on the status of the patient's MDS.

http://www.mdsbeacon.com/news/2013/0...fe-expectancy/

The basic thrust of this article is that depending on how aggressive the MDS is, it may be more or less advantageous to do a transplant. The summary of the article is that people with lower risk disease should generally hold off on transplant, while people with more advanced disease should generally go forward with the transplant, taking into account other issues like the availability of a donor, and overall health. This is speaking strictly from the law of large numbers, and really does not address individual cases, which is what always makes the decision challenging.

[Doug C.]

Thank you for your reply. I appreciate you sharing your thoughts and it does help. My husband is older but in perfect health. He runs everyday and still works. It is hard to imagine what he will be like after he has a transplant. However, it is even harder to think about what will happen when the Vidaza stops working. I appreciate any thoughts you have and thanks again for responding.

Originally Posted by gramous

Hello,

this is the problem of the patients who have mds and the chance of having a donor.
How old is your husband?
Here in Belgium, the practicers perform mini transplant for older people (->70 years old). For a high risk myelodysplastic, it's approuved that transplant can given a longer survival that best supportative cares... In fact, vidazza stop always to work ... but no one can know when....
The results are better when the patient is in remission.
It is normal of being affraid when you see the statistics but you should not forget that the results are better and better each year and that the last statistics doesn't show that...
The decision is hard but transplant is always now the only solution for beating mds.

Sorry for my bad English.
Friendly regards

[susanML]

Originally Posted by Doug C.

My husband was diagnosed with MDS (RAEB-2 with excess blasts) in October, 2012. Since then he has been receiving Vidaza and just completed his 10th round. Our local oncologist and the doctor at the Cleveland Clinic have suggested a bone marrow transplant. How does one decide to have this procedure when all the statistics are so scary. We are struggling with this decision. Can anyone help?

Hi again - To answer your question about answering posts - all you have to do is press "quote" and it will bring you to a reply box. Hope this helps too.

[Doug C.]

Originally Posted by susanML

Hi again - To answer your question about answering posts - all you have to do is press "quote" and it will bring you to a reply box. Hope this helps too.

.
Good luck when you go for your evaluation. I hope you will be able to have a transplant. I would be interested to know what they tell you about the process.
I will keep you in my thoughts.

[susanML]

Originally Posted by Doug C.

.
Good luck when you go for your evaluation. I hope you will be able to have a transplant. I would be interested to know what they tell you about the process.
I will keep you in my thoughts.

Thank you - I will let you know -

[DebS]

It is such a hard decision. My husband and I are going through the same thing now.

Good luck to all of you. These forums are such a great place to get information and support.

Deb

[Greg H]

Hi Audrey!

There really no one size fits all answer to your question, but the point that DanL made is important. There have been a few different studies over the years that look at transplant timing for MDS, and the answer always seems to be that folks with low risk disease live longer if they delay transplant until their disease progresses while folks with high risk disease tend to live longer if they transplant sooner. Again, that's all based on fancy math and averages, like everything else you read about MDS.

It's my impression that Vidaza pretty much always quits working at some point. I'm not aware of anyone going years and years on Vidaza (but I'm ready to be enlightened on that score). So it may be a not a matter of "if" the Vidaza quits working, but rather "when" it quits working.

You might want to talk with your docs about that point. It could be, as others have suggested, that they want to transplant while it is still working because some studies have indicated that is a good strategy.

It's really great that your husband is in excellent health. Folks who have other health problems are more likely to have problems with transplant.

Take care!

Greg

[kris]

Yes, all the research shows that at somepoint Vidaza will stop working. My husband had a wonderful run of 25 months. We were told that was remarkable. We felt it was 2 more years of research and possibiliyt for new advances for other treatments.
Should you go for transplant? That is a personal choice. I would explore the option, decide on a center for transplant, get tested and be ready.

It takes time (months) we waited until the Vidaza stopped working and almost didn't make it to the day of transplant. One problem after another as Rick's health deteriorated.

I must say Rick has done very well post transplant and in November will celebrate 2 yrs.

No, it is not to be undertaken lightly.
Yes ,the odds are not in your favor.
Be sure your ready for the hard uphill fight.

Yet, if you go to a center that has a good reputation, does many transplants, your MD will be honest, upfront and that rapport is essential as you will see each other often.

Good Luck on what ever you decide.

[katgio50]

My husband was diagnosed with MDS in Dec. 2011 and was in the watch and wait mode. He received Procrit shots on a fairly regular basis, but nothing else. In May of this year his numbers started going down and he received his first transfusion. After a BMB, it was determined he had AML with about 50% blasts. That seemingly happened very fast. He has had induction chemo and is going for a transplant in Oct. at age 74. He is in great physical condition, but it is still a VERY hard decision. My point is that at some point it may be out of your hands and be the only option available. Good luck with your decision.

[Susan L]

Originally Posted by katgio50

My husband was diagnosed with MDS in Dec. 2011 and was in the watch and wait mode. He received Procrit shots on a fairly regular basis, but nothing else. In May of this year his numbers started going down and he received his first transfusion. After a BMB, it was determined he had AML with about 50% blasts. That seemingly happened very fast. He has had induction chemo and is going for a transplant in Oct. at age 74. He is in great physical condition, but it is still a VERY hard decision. My point is that at some point it may be out of your hands and be the only option available. Good luck with your decision.

The AML does seem to come on quickly once the blasts start increasing - I am now in the process of searching for a donor. Did your husband have a family match? Much success to you !!

[katgio50]

Thank you Susan. A donor was found which is why we are proceeding with the transplant fairly quickly. Good luck with your search!

[Susan L]

Originally Posted by katgio50

Thank you Susan. A donor was found which is why we are proceeding with the transplant fairly quickly. Good luck with your search!

How long did it take to find the donor?

[katgio50]

It was rather quick. My husband was in Moffitt for his induction chemo for most of Aug. and I let the transplant people know that we did not have a sibling donor. I figured that it would probably be a couple of months before we heard ,but they found three donors and let us know on Sept.5. We felt that was a sign from God that we were to go forward with the transplant as we had some doubts. I thought that it was unbelievable that they found a donor that quickly. Therefore he can go straight to transplant from induction without additional chemo. We are so thankful!

[Susan L]

Originally Posted by katgio50

It was rather quick. My husband was in Moffitt for his induction chemo for most of Aug. and I let the transplant people know that we did not have a sibling donor. I figured that it would probably be a couple of months before we heard ,but they found three donors and let us know on Sept.5. We felt that was a sign from God that we were to go forward with the transplant as we had some doubts. I thought that it was unbelievable that they found a donor that quickly. Therefore he can go straight to transplant from induction without additional chemo. We are so thankful!

Hi - That was really fast - like I said before I am in the registry as of Friday and I heard from a patient that was at the BMT unit at Northside and she too had a donor located in 2 to 3 weeks. That is just amazing to me-I hope they find one for me that fast too!! I am so ready to get going - I feel really good about things -- Best wishes and keep in touch please with what is going on.

[DebS]

Katgio

How great that your husband doesn't have to have additional chemo!!! That truly is a blessing. Best of luck to you.

Susan--Hang in there. Hopefully you will have good news soon