The Leukemia & Lymphoma Society Community: Message List - Relapsed AML flt3+ Patient, 6 Months Post-BMT, Seeking Opinions

Re: Relapsed AML flt3+ Patient, 6 Months Post-BMT, Seeking Opinions

tex_silver@yahoo.com — Tue, 18 Dec 2012 17:15:30 GMT

Okay, so I've either been completely unobservant of the word "morphological," have had a rather extended chemo brain moment of late or it's a term not used around me until recently. Any of these are quite possible. When I was first told I was in remission, that's what they were talking about.

When I was first dx'd the visual count was 20% blasts but the Flow showed 43% or 48% (one of those curvy numbers). Which explains why they were using MDS and AML interchangeably. Amazing how much detail I used to know that I simply can't rely on knowing anymore.

As for the question, we can never get it out of our head completely and I'd never suggest we should. It's one of the tricks I learned to distract myself because I simply couldn't live with the stress 24/7 and had to find a way out of it sometimes.

I remain troubled by the lack of accurate information you've received. That would be bad anywhere. At the Hutch, it remains a huge problem and I'm still astounded by it.

You're here today. That gives you a more than fighting chance at tomorrow. String enough of those together and you're post-AML. So kick ass.

Blessings

Re: Relapsed AML flt3+ Patient, 6 Months Post-BMT, Seeking Opinions

communityreply@lls.org — Tue, 18 Dec 2012 07:44:13 GMT

Re: the morphologic remission and MRD discussion, I'll write exactly what a doctor at the Hutch told me:

Morphologic remission: means marrow blasts are less than 5%. Therefore, morphologic remission can describe someone with minimal residual disease (MRD) or someone who is in complete remission. Kind of like a square is also properly described as a rectangle.
Minimal residual disease: any presence of marrow blasts, below 5%, based on the flow cytometry, which is extremely sensitive (remember when everyone was questioning whether I meant 67% when I typed 0.67%?? Haha. Well, that 0.67% marrow blasts were detected by flow cytometry and meant that I had minimal residual disease (MRD).
MRD: bad, at least for a FLT3er like myself, because those blasts will multiply. MRD - not such a huge problem for some lucky folks, because sometimes their shiny new marrow destroys their blasts. That is not what is happening in my case.

Re: the question on how I'd like to live my life, regardless of whether it's a day, a year, or 100 years:

I want to be sure that, if I am doing something, I am doing the best that I can do. Sometimes, the quest to do my best results in stress, particularly where there are a lot of options, a lot of risks, and a lot of bad information from my providers (pretty much my entire adventure with AML has been filled with bad info from providers).
Until/unless my condition is such that I elect not to pursue any further treatment, I will likely stress to some extent over the options, their relative merits, and the factors that may affect whether I can even pursue the options I'd like. That's because I want to put my best effort in, if I'm going to put any effort at all.
I am not in a position to decline further treatment at this time. And other than the AML and the decisionmaking process that surrounds my treatment for it, life is good and stress-free

Tex, I hope you've recovered from your cold and are feeling much better!!

Re: Relapsed AML flt3+ Patient, 6 Months Post-BMT, Seeking Opinions

tex_silver@yahoo.com — Wed, 12 Dec 2012 21:42:11 GMT

MJax wrote:

I'm getting stressed out.

Let me ask you a question you might find offensive (i hope not).

If it turns out you only have three months to live, do you want to live them stressed out, with negative emotions?

I was certainly unsuccessful a lot of the time but I did my very best to just relax and figure things are going to work out. Turns out they did. And I'm still glad for every second I spent not worrying about it.

Like I said, I didn't always pull it off but I really tried.

Blessings

Re: Relapsed AML flt3+ Patient, 6 Months Post-BMT, Seeking Opinions

tex_silver@yahoo.com — Wed, 12 Dec 2012 21:22:21 GMT

felursus wrote:

Remission is generally considered to be when the blasts in the marrow are < 5%.

And CR is when we hit <5% and our counts have returned to normal, Or so I've been told. Wth, I'm not a doc.

This whole thing about morphologic remission is a concept I've just seen a couple of times and only recently. I'm thinking it's something they've just figured out or just figured out the importance of. Like many changes I've seen over the years, it will filter through the field, be looked at some more and ultimately disappear or become a permanent fixture...at least until the next new thing comes along.

After just reading MJax's recent latest replies, maybe the whole thing is just a word I haven't noticed before. MRD has to be a concern because they're the seeds of relapse.

When the blasts are under 5%, the disease isn't considered active, thus, "remission." But they still want to get it all gone or the disease might well come back. The thing I don't understand is why they're not doing more to reduce his cyclosporine because GVH is required for GVL. They need to get his immune system cranked up so it will gobble up the remaining disease. At least, that has been the common wisdom for as long as I've been in the BMT/SCT community. It's why I'm puzzled by the response of the doctors at the Hutch who were reticent to put me back on immune suppression, even when my GVH was kicking back up at the five-year mark.

By the way, I've been in bed, actual bed, with a bad cold and fever the past few days. I think I'm writing coherently but, if I'm not, that might be the reason. That's assuming my writing is usually coherent, of course.

Re: Relapsed AML flt3+ Patient, 6 Months Post-BMT, Seeking Opinions

communityreply@lls.org — Tue, 11 Dec 2012 17:00:45 GMT

Hi Karen,

Thanks so much for the link. Yep, Quizartinib... a/k/a/ AC220... That's what I want so badly. It's SO PROMISING for flt3 folks. My MRD is still flt3+... stupid flt3. My AML always did have that, so I wasn't terribly surprised when it came back through after Transplants #1 and #2.

Regarding the immunosuppression, they have fully phased out one of my two immunosuppressants (it was called Mycophenilate Mofetil, MMF, or CellCept) and now they are in the process of phasing out the other (Cyclosporine, aka GenGraf). Because these have to be phased out slowly, my last Cyclosporine dose will be January 18 -- aka Day 100 for me. Hope that clears things up...

Yes, morphologic remission is considered to be when the blasts are lower than 5%. But when there are any blasts at all, that's Minimal Residual Disease, and those blasts can and do multiply. As of today, mine have gotten into my peripheral blood (even though they were only 1.9% in the marrow, and none in the peripheral blood, 3 weeks ago). This disease moves QUICKLY.

As for the folks getting reduced-intensity conditioning pre-transplant, my docs tell me the transplant itself usually knocks out any MRD. It didn't, in my case, and now it's growing.

Options on the table (in addition to phasing out immunosuppression) include AC220 if they can get it through compassionate use, the clinical trial that Bichette linked above, and DLI. Or a combination of these things.

Will know more after today's biopsy, but I probably won't write back in until there's a plan in place. I'm getting stressed out.

Re: Relapsed AML flt3+ Patient, 6 Months Post-BMT, Seeking Opinions

communityreply@lls.org — Tue, 11 Dec 2012 17:01:05 GMT

My chimerism is 100% donor...

Re: Relapsed AML flt3+ Patient, 6 Months Post-BMT, Seeking Opinions

communityreply@lls.org — Tue, 11 Dec 2012 16:54:31 GMT

This is actually really interesting. One of my doctors is listed as a Principal Investigator at his center for it... So even though there are some hiccups (must be off all immunosuppression, etc.) I will definitely be asking about this today. Thank you so much for posting this!

Re: Relapsed AML flt3+ Patient, 6 Months Post-BMT, Seeking Opinions

communityreply@lls.org — Tue, 11 Dec 2012 16:53:07 GMT

Thank you, Tex, for the constant hopes, prayers, and encouraging details! I'm hoping too!

Re: Relapsed AML flt3+ Patient, 6 Months Post-BMT, Seeking Opinions

communityreply@lls.org — Tue, 11 Dec 2012 01:35:10 GMT

MJax, thinking about the immunosuppressants, are you fully engrafted??

Re: Relapsed AML flt3+ Patient, 6 Months Post-BMT, Seeking Opinions

communityreply@lls.org — Tue, 11 Dec 2012 00:56:01 GMT

http://www.cancernetwork.com/conference-reports/ash2012/content/article/10165/2118911

It's a report of a drug study for people who are FLT3+. I'm not sure how it would apply to someone who's had a transplant though, but it's something that's out there. Per the report, the drug works much better on those who are FLT3+ than on those who aren't. I'm also not sure whether it would be beneficial to someone with such MRD as you. I hope the MDs at the Hutch can manage to get you the original drug through compassionate use.

I, too, was a bit confused about your flow-cytometry report. Remission is generally considered to be when the blasts in the marrow are < 5%. I surprised that they haven't lowered your immune-supressant drugs to let GVL take effect. Consider all the people who are now getting reduced-intensity conditioning pre-transplant: most of them must have MRD, because they haven't done the radiation, and the chemo isn't of as high intensity as the normal dosage. I guess I'm just confused.

Karen