how long to wait for bone marrow transplant?

[J.claire]

I wondered what things you should consider in deciding how long to wait for a bone marrow transplant. I have RA with low white cells, but almost no symptoms. Should I wait until I have symptoms? I am age 50. I know some medical centers have age cut-offs for transplants, but I am in good health, so maybe they would be flexible. It bothers me when I look at the approx. 50% success rates for marrow transplants, when I am not feeling symptoms yet. What did those of you who had transplants consider in making your decisions?

[Marsha]

J. claire

I may get alot of flak about this. When I was dx’d with MDS/MPD CMML in 2/04. I was given options; at that time there wasn’t the medications there are now. I was age 50 like you; I only had fatigue, SOB, elevated WBC and low hgb and platlets. After all consideration I went for the transplant and did not look at statistics at all. I felt that I would never be as strong or healthy as I was at that time. And if I did watch/wait and it had gone into acute stage leukemia I would then have to try to be put into remission; and then transplant. It took until 11/04 before I was able to get an unrelated donor as my siblings did not match. I made my decision because it was the right one for me (I wanted the cure) and I never looked back after I made I have just went forward. Who knows what is right thing to do. That is something only you have to search out the answer to for yourself. I wish you the best in finding the answer that best works for you.

Marsha

[J.claire]

Thank you so much for your frank, intellient response. My hematologist and two of the nurses are urging me to consider the transplant relatively soon, and I do greatly respect them. It is really good to hear from a real person who went through this. Did you worry about the transplant survival stats? It is so nice to connect with someone.

[Jimbob]

Just in case, I would suggest that you at least have them beging the search for a donor. Then continue to seek all the information you can on the various methods of treatment as the search goes on. That can give you more options and, if the alternatives don’t work well enough, you could be ready for a transplant.
Jim

[Jack_dup1]

Marsha,
I don’t know why you would get flak from anyone, that was the right choice for you, you were younger, healthy, and did not face a lot of options. There are more treatments out there, but so far, not many cures. For some, it is the only chance for a cure. It just does not work for every one. It is a gamble, but so is doing nothing. They can give me flak, I don’t care. That’s the nice thing about getting older.
Jack

[willie]

J.claire My wife was given a life expectancy index of 3 1/2 years if untreated. Your doctor can give you the same info. She opted to go for the transplant when we knew her brother was a match. She never looked back as it was described to us as the only potential cure. I wish we would have been given info on more of the sustaining options but I do not think she would have had it any other way. Her % by the way was set at 70% for success to 1 year. She never doubted her desire to go for the potential fix. She also did not pay attention to the numbers either. She was 55 and on the cusp but the good centers will deal with the age. Willie

[patti]

Marsha,

I think you said something so important. When one makes the decision that is right for them you have to just go forward and never look back. I think that is so important and you did just that and you have done well. I think the keep looking forward is the part of healing that is mental/spiritual and is just as important as physical.

Patti

[Jack_dup1]

J. Claire
You may want go visit Jeff Becks site below and read his journal, he has had a tough battle but thankfully, seems to be doing well.
Jack

http://www.caringbridge.org/visit/jeffbeck

[g-masews]

This is, of course, the million dollar question and no one can answer it for you. When my husband was diagnosed 18 mos. ago, his doctor believed he didn’t have long to even consider the options. The pathology report, and all the medical journals I’ve read, certainly didn’t give my husband much of chance without a transplant and the hemo dr. believed his transformation to leukemia would not be far off. My husband read and looked at all the statistics, and for him (and this was entirely his choice), he did not want to spend whatever time he had left possibly recovering from something that didn’t work, or die going through it, or maybe have a successful transplant, but deal with other health issues as a result. We have eight young grandbabies and he wanted to have as much time as possible with them. That doesn’t mean that down the road he won’t change his mind and I know he gets older all the time (He’s 56) but, he has not had one symptom or a single treatment since the day we were given the news a year and a half ago. No one would ever guess in a million years that he had any disease at all. His doctor, whom he hasn’t seen in almost a year would never have believed it. I only post this because, had he done the transplant, he might not be here today or able to enjoy the two new grandbabies we’ve had in the past year. Maybe if it comes down to the wire, the possibility of a transplant will still be there, but right now, he knows he made the right decision for him.

[patti]

J. Claire,

I think g-masews brought up a good point. It is just really hard to know. Someone else mentioned starting the process for finding a match in the event that a transplant were needed. That seems like a wise thing no matter what decision you make (now or later). One thing she pointed out that has been true for my MIL is they told us mom only had 4-6 months to live and that she would for sure transform quickly to leukemia. It’s been over two years and she chose no major medical intervention (chemo) and she’s had a good quality of life and done well (she’s 76). Obviously age is a factor for her as a transplant was never an option. I was thinking mainly about the time thing and how doctors really can’t know how each one of us will react. One thing, I would encourage you to just read and read and read about people who’ve had transplants and how they’ve done. You can find some stories here and there are lots on the leukemia website forum. Sometimes hearing people’s stories helps us make more informed decisions.

The only other thing I’d add is if you do decide to do a transplant (now or later) you will help your body tremendously by strengthening it with some sort of naturapathic medicine along the way. I think anything that helps the healing process along (even if the doctor’s say it won’t work) is a good thing to do.

All the best,

patti

[g-masews]

Just one more point regarding starting the search for a transplant. Our doctor said the search would be done by the transplant team and not until we were ready to commit to it. I know it’s expensive and if they find a donor right away, you can’t just say, “not now, later”, as that donor might not be available later. On the other hand, a match might not be found for quite some time; time you might not have. Hate to throw that quandry into the mix, but it’s another consideration to add to the list.

[J.claire]

I have read and re-read your words. So many different experiences, and so much caring and intelligence in your responses. I am so glad I found this forum. It is so hard to get real answers from the doctors and nurses, since they have to be so careful about what they say, and they can’t really speak from experience like you all can. I hope even more people tell their stories about the decisions they have made for surviving MDS as best they can for who they are. Many many thanks to all of you.

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