Hi Debbie,

I can only speak from the experience my dad had. He was originally not FLT3. After he went through his 2 rounds of inductions and then a few rounds of consolidation, he unfortunately relapsed. They tested him for FLT3 at that time. The doctor explained that this mutation can develop later even if it wasn't present when first diagnosed. Hope that offers some clarification. Wishing your sister all the best. Stay strong.

Debbie, I started out as Flt3 positive and it went away after the induction chemo that put me into remission. And thank god that it has not returned, They have ran the test on every one of my biopsies, but that might be part of the protocol for the Clinical Trial that I am in. I remember that Jo does not like to call and ask a bunch of questions but why wait and stew over it for 3 more weeks? Consider getting them on the phone with Jo there too and ask the question. I wish I would have seen this earlier, I just got back from the clinic and I could have asked my np. Praying for you guys, let us know how it goes.
DaveJ

Dear Debbie,

Worry NEVER changed a thing. I Agree you should ask the question asap and go from there.

While i wish my brother was not Flt3 positive, he seems to be moving slowly in the right direction under a clinical trial ASP2215. Know there seems to be hope that these trial drugs may level the playing field for those with Flt3.

Somehow we find the strength to play with the deck we are handed.
Prayers.
Twilight

Debbie,

I've been thinking and praying for jo And hoping that her appointment went well yesterday. I do not believe she was ever flt3 because if she was, the treatment path is always sct. Inversion 16 is a good sub type to have. Please hold on to that. Also praying for a healthy grand baby,what a blessing

Julie

I was inversion 16 too and had a FLT3 point mutation, not ITD. When I get my bone marrow done, in addition to the core binding factor, they always run mutation scans for the ones I had at diagnosis. Doesn't necessarily mean there is a problem, they are just tracking the past. Any presentation of a mutation at all is a mutation whether 1% or 39%. I would just view it as keeping tabs unless told otherwise. No need to add another thing to worry about, trust me I find myself doing it all of the time.

Amesch,

It is so enlightening to me to now realize that both you and jo were flt3 at dx. I agree with you that you can't have just a little flt3. For my docs is was black or white. This news actually helps me understand why your treatment at mda was so different than mine. I often thought I may have been short changed on the about of chemo I got compared to you two but knowing the flt 3 part makes sense. Thanks for the clarification.

Julie

Debbie,

The description below explains the two types of FLT3-

In general, FLT3 mutations can be divided into 2 categories: (1) internal tandem duplications (FLT3/ITD mutations) in or near the juxtamembrane domain of the receptor and (2) point mutations resulting in single amino acid substitutions occurring within the activation loop of the tyrosine kinase domain (FLT3/TKD mutations). There is less of a clear pattern with FLT3/TKD mutations, which are reported to occur in approximately 7% of patients, although they seem to be more common in cytogenetically favorable risk AML. Inversion 16

The wild-type allele refers to FLT3/ITD associated with favorable subtypes such as Inversion 16.

"In the FLT3/ITD assay, however, increasing the number of cycles will not increase the sensitivity because the PCR primers used to amplify the mutant allele also amplify the wild-type allele"

At Jo's appt, please have her discuss this with her med team.

Julie

Debbie,

Me and your sister are both at MDA for our treatments and your doctor, Dr. Borthakur I believe you mentioned once, was in charge of the protocol I was on, FLAG-IDA.

In determining whether I needed maintenance chemotherapy or not, my doctor was more concerned with whether or not I had the DNMT3A mutation. I guess since my FLT3 was TKD and not ITD it wasn't as much of concern as the other one. Was your sister DNMT3A positive as well?

Hi again Debbie. As you might know, I was FLT3 and had a SCT in December 2012, about 28 months ago. I reached remission after two induction rounds and have, knock wood, stayed there.

I don't know what to make of the FLT3 mutation. I've read all the articles, too. But the ones I understand probably are too simple to describe the mutation fully. My doctor doesn't go into details about it, she just says those cells are gone. By the way, I've gotten the impression that it's only the bad cells that have this mutation and since it accelerates the reproduction of these cells the good donor cells can't kill the bad ones fast enough, that's why there is a higher incidence of relapse. That's what those inhibitors are all about - keep the reproduction of those cells under control so the chemo can kill off as much as possible and the donor cells can take care of the rest.

And I also think there may be degrees of the mutation. Lori once mentioned that one of her son's doctors was a FLT3 guru and the strength of the mutation was related to alleles and ratios and stuff that none of us except Cliff would understand.

I personally don't know if I had I ITD or TDK but I'm assuming it was ITD because they recommended a SCT in first remission which was confirmed by a second opinion from Sloan Kettering. And I'm still here, so it's possible to overcome this diagnosis. Keep us informed and good luck.

Lou

Lou,

Thank you so much for this excellent description. It is so amazing that there is treatment available for flt3 that does not include a sct for amesch and jo. It just shows the strides that are being made daily and gives others such hope. 28 months post sct is so inspiring! Bless you so staying with us to encourage all of us.

Praying for your continued health
Julie

amesch1,

Here is what I see from her tests:

Original dx: 1/17/14 - FLT3 noted on tests results but it says it is present at a low allelic burden

amesch1,
Sorry, somehow most of the post above was cut off.

Original dx: 1/17/14 - FLT3 noted on tests results but it says it is present at a low allelic burden less than 10%

BMB - 2/12/14, 4/11/14, and 6/18/14 no mention of FLT3 in dx

BMB - 10/3/2014 - dx states Inv 16 with FLT3 and lDH1 mutations

BMB - 2/18/2015 no mention of FLT3 in dx

She has never been told by Dr. Borthakur that she was FLT3 positive in any way. It comes and goes in her diagnosis but maybe that is why she is on the decitabine maintenance chemo for another year.

Cliff, I know you say we shouldn't look at that stuff but it is hard not to and I have to say, mentally, I don't think my sister could take a relapse. We don't talk about relapse, it's taking everything she has just to deal with the thought of chemo for another year. I have asked her to ask the doctor on her next visit what it all means.

Overprotective & worried sister
Debbie

Debbie,

Once you show a presence for a mutation, more times than not when you get your BMB, they will test it for said mutations and sometimes more. One time I had a 56 mutation panel test. Assuming that the FLT3 is not ITD, Dr. Borthakur is probably more concerned about treating and controlling the INV 16. Taking care of the INV 16 usually takes care of the other mutations that were there as well.

It just worried me because after her initial dx Jan 2014 they tested specifically for it and then didn't again until 2/18/15. In her records, there is only two dates with specific FLT3 mutation testing. Since they didn't again until 2/18 it worried me that something was showing in all her tests that made them test again. All her other bx show testing for the INV 16 but not a specific test for FLT3 mutation like the last one on 2/18. She gave me access to all her records at MDA and I have read them all (I don't understand most of it :) but I have read everything.)

My sister and I are two totally different personalities. She seems content to just not look at things and do her worrying without really finding out and I am the type that I want to see everything, read everything and know exactly what is going on and why. That's probably the main reason I am on here and she is not :). I know I need to let go and let her deal with it the way she wants but sometimes she drives me crazy.

She is going on a cruise to Belize in June and is trying to talk her doctor into waiting for her next chemo until she returns. I have asked her, do you know if your insurance will pay for medical services out of the country if you have a problem? Will you be able to have a blood transfusion if you need one? All she knows is that her doctor said there was a pretty good hospital in Belize. Great, what if you are on the way to Belize but not there yet when something happens!!

Am I wrong to worry about this if she isn't?? I guess so but I can't help it.

Debbie :(

I'd try not to worry about the flt3, if it was a concern it would have been brought up that she was high risk and needed a transplant. I'm with you on leaving the country, no way you are getting me more than a few hours away from Detroit until I hit at least 24 months post transplant. But it is also good that she is going ahead and living her life. Guess I haven't been much help.
Praying for you guys.
DaveJ