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pierre
MemberHi Jen,
To answer your question–yes. Very similar in fact. My mother and uncle were an exact match, and her AML had evolved from MDS, which was also treatment-related (breast cancer 13 years prior).
She’s now 9 months post mini-transplant and doing just fine.
Best of luck,
Pierre
MemberHi Janice,
Presumably if your Dad’ s doctor mentions a mini-transplant as a possible option down the road, that means your Dad is in good overall health (leaving aside the MDS). I believe that’s the most important prerequisite for a transplant.
If that’s the case, I would not hesitate one minute. Of course I’m influenced by my mother’s continued good health, which I know is due in no small part to continued good luck…but it seems to me that if there’s any possibility of a cure, you’ve got to go for it, especially since the outcome to the first line of treatment is certain.
All good wishes.
MemberHi Sandhya,
Anecdotal evidence, but it worked very well for my mother. She was treated with it, along with ara-c, for a couple of months, and it put her in complete remission from AML that had evolved from MDS.
Pierre
MemberEven though I tend to be a little superstitious and am wary of sharing news that seems that seems too good to be true, I thought I’d let you know that my mother is now past the critical 100-day post-SCT milestone. She has had no GVHD to speak of–just a little rash that lasted all of one day.
We’ve also received the final results of a pretty thorough biopsy/cytogenetic exam (i.e. FISH test) which shows that her chromosomal abnormalities are, as of now, all gone.
Best of luck to everyone engaged in the journey…
MemberKatie,
My mom is 69 years old.
Be sure to remind your dad that a perfect sibling match is a blessing. My mother had a perfect match in her brother. Also–transplant chemo is tough but usually short as well.
Please don’t hesitate to ask me any questions.
MemberJust thought I would speak up here and let you know that my mother had her (mini) transplant 3 months ago and so far (knock on wood, salt over shoulder, etc.) everything is going as well as could be expected. That’s a pretty remarkable comment on what medicine can do in 2006, when you consider her age and initial prognosis. (Not to say there wasn’t much, much luck involved as well.)
What happened to Dennis was terrible and sadly, not out of the ordinary. But it doesn’t give a full picture of what you can expect from the procedure, either.
Pierre
MemberHi there Jeff,
Not a personal experience, but my mother had cytoxan for 2 days during her preparatory regimen for a mini-allo. I won’t sugarcoat it–it’s tough. Tougher than most other chemos I think, at least in terms of nausea and vomiting. On the bright side, it’s usually given for short durations, and it does a good job of suppressing your marrow!
The other drug she was given at that time was melphalan, similar to busulfan. Not much to report there.
Pierre
MemberJanice…I’m glad I checked out this thread…your news deserved one of its own!
This is wonderful news and gives a reason to hope to those who, on top of everything else, have to deal with a bad luck of the draw with regards to chromosomes.
Lynette–as you may guess I have a special fondness for NYP, and I sincerely hope your mother will have the same kind of results there she had the first time round. Are you thinking of doing ara-c/trisenox again (if that’s a possibility)?
Pierre
MemberHi Sylvia,
I certainly hope the donor search will take much less than 3 months. I’m not entirely sure about this, since we didn’t have a need for an unrelated donor, but I seem to remember being told by a transplant doctor that the search can go much faster for those who come from a homogenous ethnic background.
The chemo my mother did was difficult, but not as “high dose” as the classic treatment of idarubicin/daunorubicin. It doesn’t work for everyone, but it did work for her, without any apparent permanent damage to her organs (which is one more thing you need to worry about when you’re fighting cancer with chemo). I know that arsenic clinical trials are coming to Europe next year. I’m sure your doctor will tell you about the different options.
Please let us know how things go.
Oh, and though I did grow up in France, I studied German in school and a bit at university 🙂
Sarah–CMV is cytomegalovirus…a pretty common and benign virus in a normal immune systems, but a dangerous one to have when your immune system is compromised (e.g. after a transplant).
MemberHallo Sylvia,
Schoen, dass Du dieses Forum gefunden hast, wenn auch unter schlechten Umstaenden.
My mother (69 y.o.) just finished a mini-allo for MDS/AML. She was released from the hospital on Monday, only three weeks post-transplant, because her counts had already gone back up more or less to normal. Even though it is far from over, I can honestly say that the whole process so far has turned out far better than we had dared to hope. Her main issues have been (and still are) nausea and vomitting, but that’s something she was already familiar with from her induction chemotherapy. We have preliminary results from a biopsy done a couple of days ago, which indicate that there are no signs of leukemia, but this needs to be confirmed with a cytogenetic exam tomorrow. At the moment we are anxiously expecting the first signs of GVHD (graft-versus-host disease), and hope that if it comes, it will be as short and painless as possible.
The real problem with transplants is that they are completely unpredictable. The three factors that we know for sure helped my mother have been 1) that she was in complete remission at the time of transplant, 2) that she had a compatible (8/8) donor in her brother, and 3), perhaps most important, that she’s in very good health for her age (which seems to be true of your father as well). Even then, though, you need to remain aware that anything can happen.
As you know, though, the good thing about both your father’s and my mother’s case is that there is not much reason to hesitate when it comes to treatment. MDS that has progressed to AML pretty much demands an allogeneic transplant, if one is possible. If you do a search on this forum (click on the “search” link at the top of this page) for my posts, you’ll see how I’ve come to this point from the moment of diagnosis back in January of this year.
You may also wish to check out the discussion boards at the Leukemia & Lymphoma Society (http://www.leukemia-lymphoma.org/hm_lls). There are very helpful people on the AML and Transplant boards.
Best of luck to you and your father, and please don’t hesitate to ask any questions you may have. I’ll do my best to answer.
Pierre
August 3, 2006 at 3:57 pm in reply to: MDS secondary to non hodgkins lymphoma progress to MDS (RARS) to AML #14270MemberJim–69.
August 2, 2006 at 2:47 am in reply to: MDS secondary to non hodgkins lymphoma progress to MDS (RARS) to AML #14267MemberSusan–
Not an exact fit, since my mother has (had, we hope) MDS secondary to breast cancer, but it also progressed to AML.
She’s now a few weeks post stem-cell transplant and doing well.
MDS/AML is indeed critical, doubly so when the MDS is secondary to another cancer. But anything is possible. Don’t give up.
MemberKaren–It was the first two (induction) cycles.
MemberFinally got a signature…
June 1, 2006 at 8:44 pm in reply to: Patients that survive transplants, midi, mini, full etc. #13289MemberIf I may just say–I think that’s a great idea.
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