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WOAH Lynette!!

Are you kidding me? You did not offend me in the least. If anything you’re my forum hero–I owe a lot of my mother’s success to your posts. I hope you realize that.

The truth is (if I can drop the false modesty for a second) that *I* think I deserve some congratulations (along with everybody else who’s been caring for my mother), and that’s how I interpreted your post. In other words, I think it makes sense for us caregivers to pat each other on the back every now and then. It’s a little different for the patients themselves since they’re fighting for their lives and “congratulations” doesn’t quite seem to capture the nature of their struggle.

Please let me know that we’re clear about this!

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Thanks Patti…I’ve already been consulting that forum for a while, though I haven’t posted there yet.

My mother has MDS that has progressed to AML.

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Thanks Patti. Of course the big question is whether getting the transplant is what made the MDS come back so strongly or if it would have come back even without a transplant.

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g-masews…not to put too fine a point on it, but besides Greg’s mom, who else did not make it?

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Well, one thing’s for sure–I seem to have touched off old disagreements by raising this subject. I think it’s natural that people would be so eager to defend their decision and their rationale given the life-or-death nature of the stakes in this game.

And I do say “game”–I think the role played by luck in all of this is often understated…I too am made a little uncomfortable by repeated invocations of God (Greg, you and I seem to agree temperamentally on this point); more than anything, I have been a little disconcerted by well-meaning friends of ours who “congratulate” my mother on her good news (e.g., getting into remission). Does that mean that bad news is worthy of reproach? I don’t see any moral dimension to this disease one way or another. On being called “brave” my mother goes so far as to say that’s it not difficult being brave when you are given no other choice…

At any rate, back to the topic at hand. I actually considered, in my first post, brutally asking who on this board has had long-term success with SCT and who has died from it (or from post-SCT relapse). This does seem to be on the back of a lot of people’s minds and I was wondering if it could be instructive to bring it out into the open. Maybe not. But the allegation that “most people” on this board who’ve gone ahead with a transplant aren’t around anymore is an alarming one and important enough to be straightened out and confirmed with facts, it seems to me.

I would also like to make it clear (in case it wasn’t already) that my mother’s MDS is pretty much as serious as it can get–secondary, with chromosome abnormalities, and at the AML stage. This isn’t a situation where we have the luxury of trying out different options.

Thanks for all of your input; I’ve already learned a lot from it.

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Thanks g-masews. That’s a gutsy decision your husband made.

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Thank you so much Greg for taking the time to write such a detailed, and helpful, answer. I’m amazed that you would do that after what happened to your mother–I often think that if things go south with mine, I wouldn’t want to think about MDS or AML ever again.

I do have a few questions for you. What exactly made the doctors decide in favor of a “midi” (as opposed to mini) transplant for your mother? Was it because she wasn’t in remission? What were her blasts levels? What exactly was the preparatory regimen she followed before the SCT, and what about her GVHD prophylaxis regimen after it? Don’t worry about it if you don’t remember all the specifics, but a general idea would be helpful.

I had no idea that breast cancer recurrences were a concern with SCT. As though the risk of leukemia relapse weren’t enough…My mother’s MDS is also secondary to breast cancer (or rather, secondary to her radiotherapy treatment for breast cancer, most likely), but that was about 13 years ago. Were you warned about that danger? It has never even been mentioned to us. Is the breat cancer liable to return because of the compromised state of the immune system after SCT, or what?

Odd you should mention Parkinson’s. My mother does not have PD, but, as it turns out, her donor does (early stages), and we’ve been concerned about the risk of transmission. The doctors have told us that there is little risk, but that they couldn’t be sure, because the causes of PD are still unknown at this point–there *is* a risk of transmission if it turns out that PD is really an autoimmune disease, but (say the doctors) that risk does not outweigh the advantages conferred by a related, sibling donor. In other words, we would gladly trade AML for PD a few years down the road. Come to think of it, there isn’t much we wouldn’t rather have.

Thanks again,

Pierre

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Hello there Richard…glad you’ve found this board…there’s a great bunch of people on here, but I just thought I’d also direct you to a BBS that’s more strictly related to straightforward leukemias (i.e. without prior MDS)–go to http://www.leukemia-lymphoma.org and click on “discussion boards.”

Please send my best wishes to your mother and let’s talk on the phone soon…

Pierre

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We consulted with both Dr Nimer (S-K) and Dr Feldman (New York Presbyterian) when my mother was diagnosed with RAEB-2 and then AML. They’re both at the top of their field and we would have been comfortable going with either one. In the end we decided in favor of Dr Feldman but it had more to do with the treatment he proposed than anything else (i.e. low-dose chemo; high-dose only if the low didn’t work–thankfully it did).

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I logged into the forum tonight thinking I was going to start a separate thread, but given the subject of this one, I think it’s as good a place as any to share the news with everyone that today we learned that my mother is in complete remission from her MDS-AML after two rounds of ara-C/arsenic at New York Presbyterian–in other words it ended up working just as it did for Lynette’s mom, whose remission was one of the initial reasons I advised my mother to sign up for the arsenic clinical trial in the first place. What better proof could there be of the incredible usefulness of this board and of its members?

We are of course extremely grateful to the doctors and very aware of our good fortune. Many thanks to Lynette, Suzanne and all the others who showed such kindness when I came here looking for information and reassurance. You may not realize it, but you have made a real difference in our lives.

We don’t have all that much time to celebrate though, since we already have to come up with a decision about the next phase of treatment (consolidation; then mini-transplant or maintenance chemo?), but regardless–today is a day of hope.

[pierre]

Thank you so much for your reply. It was very brave of you to go with your gut instincts when you had the word “cure” dangled in front of you, and I’m glad it turned out to be the right choice. So much luck seems to be involved in this disease and its treatment options.

Have your doctors mentioned the possibility of trying Revlimid at some point, given your 5q-? My mother’s doctors suggested it if her blasts come down enough, though the data on Revlimid is on low blasts before they go up, not low blasts after they’ve come down–which makes a big difference. But one doctor said using Revlimid as consolidation/maintenance for AML that grew out of 5q- MDS is “conceptually fascinating”–whatever that means.

[pierre]

Thanks Patti, Lynette, and Janice. Updates soon.

[pierre]

My goodness so much help from everyone. Thank you!

I wish I could copy and paste my very first post here so that everyone could know the details of my mother’s situation, but I can’t seem to be able to find it. Looks like it’s been deleted.

So I’ll just repeat the basics. My mother (an otherwise healthy 69-year old French woman living with my American dad in Paris) was diagnosed with RAEB-2 last week (16% blasts). Her other numbers seem to be OK for now, even though they’ve dropped since her first exams in December.

She’s seen a doctor today. (Still in France.) Apparently she’d be eligible for Revlimid because she’s got 5q. Unfortunately she has other chromsome aberrations as well, though she hasn’t told me which yet.

She’s flying out to NYC, where I live, next week, and she’s seeing Dr Nimer at Sloan Kettering on Tuesday. I can’t wait. I want her to get started NOW.

She’s also sent her test results to Dr Feldman but hasn’t heard back from him yet.

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Sorry I just noticed that Sloan (no e at the end!) is in fact an MDS Center of Excellence.

Still, my question stands.

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Thank you so much Suzanne and Eve.

My mom is getting in touch with Dr Nimer at Sloane Memorial and Dr Feldman at Weill-Cornell, both in NYC.

As far as Europe is concerned she is trying to get on the phone with Dr Bron at Jules Bordet in Brussels.

Exactly how important is it that she go to an MDS Center of Excellence? Looking at the list on the front page of this website I notice that neither Sloane nor Jules Bordet are listed among those Centers, even though both Dr Nimer and Dr Bron were recommended to us by other doctors.

Also, any advice as to lifestyle (diet etc) changes my mother could begin with before she gets actual medical treatment? I want her to get started ASAP and feel like she’s regaining at least a little bit of control after feeling so totally helpless.

I realize this is a lot of questions–but the truth is I have many more…

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