The Leukemia & Lymphoma Society - Fighting Blood Cancers
34 Replies Latest reply: Apr 28, 2012 2:14 PM by Tex RSS

Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?

moon12 Registered Users
Currently Being Moderated

Hi, I'm a young adult with M2 AML. I have a 'bad' chromosome abnormality and FLT3 IDT.

 

It's mainly the FLT3 IDT which puts me in a poor prognosis group, thus I'm getting a bone marrow transplant soon. I've already have 4 rounds of Chemo. The induction round didn't work, but I had a stronger dose in the second round, which put me in Complete Remisssion (with no signs of cytogentic abnormalities). This is expected with my certain chromosome abnormality.

 

I've read a few recent journals which suggest that Allogenic Bone Marrow Transplantations provides "no" benifits for people with FLT3:

http://www.ncbi.nlm.nih.gov/pubmed/16076872


This article is fairly recent (2005).

 

Is this true? I've been hearing so many success stories with people with FLT3 IDT and BMTs. My hospital has good records of people having better chances with BMT, even with FLT3 IDT.

 

My Specialist says that for me (based on general statistics), my chances are roughly 70% NOT RELAPSING with the BMT. The overall "cure" is 40-50%. This kinda confuses me.

 

I'm not sure if I misunderstood what the specialist is telling me. Im so confused. Journals that I've read say that I have poor prognosis. But the specialists are saying that there is a chance. I know that every AML patient has different or no chromosome abnormalities, which makes a difference. But it's the FLT3 IDT which matters a lot.

 

 

 

Can anyone share their thoughts/answer my concerns through your experiences? Have your specalists put you on special drugs, therapies or chemo to combat severe AML? What can I expect from my BMT? I hear it's very harsh and severe. How to prepare for it?

 

Thank you.

  • Re: Can anyone with experiences of severe AML share their thoughts on this?
    pamd Registered Users
    Currently Being Moderated

    Hey, Moon12, I don't have FLT3, I had relapsed AML M2, with a weird chromosomal abnormality that put me in the intermediate risk category by default, since so little was known about it. So I'm hoping other people here see this, who have FLT3 and can speak to that side of it---I know we have some here. I remember being tested for it, and was under the impression that there are now some targeted drugs they use specifically for FLT3, but I'm no expert on that. I don't know the pros and cons of a BMT for FLT3, but I guess I'm thinking---again, without expert medical advice---what would be your other choice? But again, I'm working without information here, just knowing FLT3 is a tough cookie.

     

    As far as having a transplant, yes it's a major procedure with many risks. I went into it knowing I had no other option, so I might as well think positively and go full steam ahead. And I had normal recovery issues, such as mouth sores, vomitting, diarrhea, fatigue---all pretty standard, all unpleasant but tolerable, especially knowing they are time-limited. And you use your pain meds, plus other drugs like anti-rejection drugs, anti-virals, antibiotics, anti-fungals to get through the first few weeks and months especially. And you communicate everything daily with your docs so they can stay on top of any potential complications. But I personally never had any other problems that can be associated with transplant---no infections of any kind, no graft-vs.-host disease, no complications period. So while transplant carries risks, and side effects can be severe, there are also people who sail through it pretty smoothly. I've never looked back, my life after 27 months is normal, and I take no transplant-associated meds (and haven't for many months) except for potassium supplements. But some people do have side effects, like GVHD, which they so take meds for long-term. It varies with each transplant.

     

    OK, enough said, since I know you really want that feedback from FLT3'ers. What hospital are you at? You know, it never hurts to get a second opinion (I did) before transplant---not that I think anyone else might recommend another course, but just to gather as much expert advice on the whys and hows of FLT3 and transplant.

     

    Good luck! Keep us posted--and congrats on the complete remission, that is the first big step! Remission is a beautiful word!

     

    Pam

  • Re: Can anyone with experiences of severe AML share their thoughts on this?
    willowbayfarm Registered Users
    Currently Being Moderated

    Hey Moon,

     

    I would suggest you modify the title of this thread to reflect that you're wanting to hear from others with FLT3+ experience.  We do have some folks on this board who have had successful transplants after they presented with this particular mutation.  You might also try doing a search of the site using "FLT3" as your search criteria to see if you can locate some of those threads that way.

     

    As Pam said, I guess you have to think about what your choices are.  If you decide against transplant, what are the odds like?  Transplant is normally only recommended to patients with few, if any, other options.  The transplant gives you a chance to beat this thing.

     

    As far as I can tell, they've learned a great deal about the FLT3 anomoly in the past few years, so even an article from 2005 may be seriously out of date.  What you need is cutting edge information.  With a decision of this magnitude, I don't think you would be out of line at all to seek a second or even a third opinion from other major cancer centers with experience in treating AML in particular.  Where are you being treated now?

     

    The good news is that you've attained a remission.  That's very, very important. 

     

    One other thing.  If your discussions with your doctor have left you confused, ask for clarification.  This is a lot to wrap your head around in a short period of time.  That doctor works for you, and part of his/her job is to make sure you absolutely understand.  Either get the doctor on the phone, or schedule an appointment to discuss this more thoroughly.  Make the doctor break it down as necessary so you can comprehend what exactly you're dealing with. 

     

    Best wishes - please let us know how things progress.

     

    - WBF

  • Re: Can anyone with experiences of severe AML share their thoughts on this?
    KyGuy Registered Users
    Currently Being Moderated

    It's good to get as much information as possible both from the medical community and printed sources.  They key to using printed sources is the publication date and I'm glad you checked it.  2005 is not a recent article though.  I'd ignore it.  Things change so constantly that I'd look at articles that are a year or less old. You may want to seek other opinions for your unique circumstances.  You could contact Fred Hutchinson (fhcrc.org) in Seattle or MD Anderson in Houston.

     

    I'm not familiar with FLT3 but if the doc is saying 70%, that's encouraging.  That would indicate to me that a lot has changed since 2005.

     

    Take care,

    Kelly

    • Re: Can anyone with experiences of severe AML share their thoughts on this?
      moon12 Registered Users
      Currently Being Moderated

      Thanks for all the replies everyone.

       

      @pamd & willowbayfarm,

      I'm in a public hospital. For the transplant, they are transfering me to a different hospital. My GP specifically recommened me to them (for reasons that I don't know). But I kinda know that these hospitals are one of the best available in my city. The doctors are very experienced and have pretty good statistics.

       

      My main major concern is that they maybe know little of my chromosome abnormaility t(7,11 ). I know that there are a lot of journals on this certain case. The chromosome abnormaility is rare, thus there aren't any statistics on prognosis. All they know is that it is in a very poor prognosis risk group (without BMT). They said that it wouldn't make a difference in treatment if they knew specific information on my case.

       

      Both hospitals have similar procedures/opinions. However, one says that the FLT3+ doesn't matter, and the (7,11) is severe. The other says it does, and the (7,11) is minor.

       

      Public journals (1990) reveal that I definately need a BMT. The problem is that I haven't heard any survival cases, as they havent been documented. All I know is that most achieve CR and tend to relapse (based on 1980 statistics, I dont know if they had BMTs).

       

      It's very stressful for me.

       

      I trust my hospital. The problem is, I want to make sure that there are other techniques/things that I can do. Maybe im paranoid.

       

      They are giving me the usual (7 + 3) and Big ICE. There was another certain drug which I forgot. At a high level of use, it poisons the heart.

       

      Where exactly would I get a second opinion? From a hospital in another country? How could I contact them?

      It's also hard to find public journals/info.

       

      @ KyGuy, how would I contact these specialists? I'm in the impression that even contacting them by email would be difficult. Specialists are always very busy. It would be excellent for me to ask them a few questions .

      • Re: Can anyone with experiences of severe AML share their thoughts on this?
        KyGuy Registered Users
        Currently Being Moderated

        Moon,

         

        My doc set up the contacts for me so I went a different route.  A number of people have called the centers and either gotten through to someone or received a call back.  The Hutch is pretty good about it.  Look at fhcrc.org to get a phone number.  People have talked to Dr. Applebaum and Dr. Estey.

         

        Take care,

        Kelly

      • Re: Can anyone with experiences of severe AML share their thoughts on this?
        willowbayfarm Registered Users
        Currently Being Moderated

        Hi Moon,

         

        Are you in the US, or somewhere else?  It's hard to tell from the zip code in your profile.  Knowing where you are would help us guide you towards a center that not only could give you a second opinion, but hopefully be accessible to you in terms of location should you decide to have them do the transplant. 

         

        If I had two differing opinions from two different centers, I would contact another to see if I could break the "tie".  My understanding is that the FLT3 needs special handling, but I'm no doctor, none of us are here. 

         

        We have had patients contact Dr. Estey and Dr. Applebaum at the Hutch via email and got a response.  It's certainly worth a try.  Here's Dr. Estey's contact info:  http://depts.washington.edu/hemeweb/research/estey.htm

         

        Dr. Estey would be a good place for you to start.  If you need to talk to someone else, he can probably put you in touch with them. 

         

        This is an important decision, and time is likely of the essence here.  You want to make sure you're as assured as possible that you're making the best decision for your particular circumstances so you can feel confident in the plan.

         

        Again, please don't rely too much on dated information.  Advances are being made all the time in this field, often at warp-speed. 

         

        - WBF

         

  • Re: Can anyone with experiences of severe AML share their thoughts on this?
    secondtimeround Registered Users
    Currently Being Moderated

    Moon,

    My husband was diagnosed with AML M2 with t(6,9) in December, 2007.  We were told the t(6,9) meant a poor prognosis.  He had a transplant in March, '08 (with 11% blasts) from a sibling donor and relapsed a year later.  After he relapsed we discovered he was FLT3 + with ITD.  When I came to these boards I learned about sorafenib working well for some with FLT3 ITD type; the studies showed it didn't work so well for FLT3 wild type.  Owen began using sorafenib with a blast count of 65% and within weeks was down to 7% and a couple of weeks later went into remission.  He went on to have a 2nd SCT this past January, this time from a matched unrelated donor and is doing very well.

     

    I would suggest asking whether the transplant doctor would use a MUD over a sibling donor (slightly greater mismatch thought to lead to more GVL) and I would also ask about whether there's any benefit to using sorafenib pre or post transplant.  My husband has not used it post transplant but others have.  When he started to use it last year, I searched for articles on the internet about sorafenib to appeal the insurance denial and came across a very small study that looked at patients who were FLT3 + and used sorafenib prior to SCT.  Both (the study was that small) were still in remission after SCT at the time the study was completed.  Since the suggestion of using sorafenib (approved for liver and kidney cancers) to treat AML appears to have originated at the Hutchinson Center, I would seek an opinion from one of the docs there about your pre-transplant conditioning. 

     

    Before my husband's 2nd transplant we asked the doctor if this would just give him a little more time or if he might still be cured.  I hold onto his words, that the transplant was "potentially curative."  If it is for him then it seems it should be for anyone.

    Good luck with the consults; keep us posted.

    Cathy

    • Re: Can anyone with experiences of severe AML share their thoughts on this?
      moon12 Registered Users
      Currently Being Moderated

      @ WBFand KyGuy

       

      I live in Australia, QLD.

       

      So that's the main problem with contacting centres in USA. I don't know if they would help me.

       

      My hospital claimes that they are in contact with international hospitals all the time, but I don't know for my case.

       

      I checked the Hutchinson site. The email address at "contact us" looks like it would only be directed to the clinic for general queries, not the specialist himself, perhaps. Since I'm in Australia, I don't think they will/can help me. Usually, 2nd opinions are done by official/personal appointments.

       

      I ll try Estey and Hutchinson.I hope they have some answers. But since I'm not and never will be their patients, I don't think they would spend their time specifically looking up 7;11.

       

      I've asked my doctor if they would talk to international specialists. I think they refused to, since it apparently wouldn't make a difference in my treatment plan.

       

      Another thing: how to contact MD Anderson?

       

      Would treatment be different with these specialists? I'd assume that most hospitals have similar treatment plans. They all have the same chemo drugs. The timing and technique may differ though. Maybe they have special/effective clinical trials?

       

      @secondtimearound

       

      I'm happy to hear that your husband is doing well. Thank you for refferring me to the drug sorafinib.

       

      I ll try asking my specialist/consultants about it.

       

      However, my specialist mentioned that the FLT3+ IDTcould have no effect on prognosis, due to having an abnormal chromosome. Not sure on every type of abnormality though.

       

      Was his 2nd relapse detected early? Did you try sorafinib immediately? I would have thought the doctors would have used BIG ICE first. It's one of the most strong chemo drugs. Im no doctor though.

       

      Good luck, let's hope he stays in remission.

      • Re: Can anyone with experiences of severe AML share their thoughts on this?
        warrior Registered Users
        Currently Being Moderated

        Moon,

        You need to read recent articles on AML It is a rapidly changing field. For your mutation I suggest you read the 2008 article n engl j med 358;18 www.nejm.org may 1, 2008. It is the FLT3 ITD that benefits significantly from a tranplant. Also  just  because you are living down under , does not mean Docs in the States will not help you via email or a phone call. Good luck fightlng this beast

      • Re: Can anyone with experiences of severe AML share their thoughts on this?
        mamawarrior Registered Users
        Currently Being Moderated

        Moon, I don't have any experience with abnormal chromosomes or flt3 but back in November, Dr. Estey did a presentation on AML treatment that included information on flt and abnormal chromosomes. Now mind you, the presentation is a year old, things change drastically, more data has been collected, possibly new drugs, it would be best you talk to him personally but i will give you the link of the program which is on the LALS. You can read the transcripts or listen to audio if you choose. While you are in a difficult situation, i hope this gives you a better understanding all the way around and maybe will lead to some questions for you to ask.

         

        It is the program from November 2009/Dr Estey

         

        http://www.leukemia-lymphoma.org/all_page?item_id=556138#aml

      • Re: Can anyone with experiences of severe AML share their thoughts on this?
        secondtimeround Registered Users
        Currently Being Moderated

        Moon,

        My husband stayed in remission for about 1 year after his first transplant, his relapse was found at his 1 year BMB.  He entered a trial at Sloan Kettering where he was given more donor lymphocytes trained to attack a protein on AML cells.  After 4 weeks of the trial his blast count increased so he was treated with FLAG + ida (fludarabine, ara-c and idarubicin but no growth factor) by his local oncologist.  This knocked his blasts down considerably but didn't get him into remission and when he left the hospital his doc thought he'd only live a few more weeks.  But he managed to hang on, I learned about sorafenib here, and his local doc agreed he should try it.  He started sorafenib in July of '09 and had to stop briefly a couple of times as he had some severe side effects-he went on a reduced dose once he got into remission.  Sorafenib comes in pill form and is taken 2X daily; Owen started on 800 mg a day, went down to 600 mg, then 400 mg and then 200 mg.  We were told it's important to keep the level of the drug consistent in the body by taking it every 12 hours even if the dose needs to be reduced.   He stopped using the sorafenib prior to his reduced intensity transplant chemo in January of this year and has not used it again.  But if he relapses his doc would have him resume it.  Owen had his 2nd transplant at Dana Farber, rather than Sloan, as his onc at Sloan wasn't familiar with sorafenib and wasn't willing to supervise his treatment on it.

         

        By the way, we emailed Dr. Applebaum at the Hutchinson Center directly to ask for an opinion after Owen failed to get in remission with FLAG + ida.  We live on the east coast and Owen was in no shape to get to Seattle so we figured it was worth a try.  Dr. A was kind enough to email back and suggested Owen be tested for FLT3.  That's how we learned Owen was FLT3 + as he had never been tested before.  Owen's oncologist emailed Dr. A first, and then we emailed with further questions and both times he was gracious enough to respond with some info.  This is the time to try to get all the info you can.  I regret not learning about sorafenib before Owen's 1st transplant - maybe he'd never have relapsed if he'd used it then. 

        Good luck with your treatment and remember, there's every reason to hope a transplant will be the cure for you.

        Cathy

      • Re: Can anyone with experiences of severe AML share their thoughts on this?
        willowbayfarm Registered Users
        Currently Being Moderated

        Hi Moon,

         

        I don't think you have anything to lose by contacting these specialists.  And, I can pretty much guarantee Estey or Applebaum won't need to "look up" anything - they know this disease inside out, they are both top authorities in the field.

         

        Any input you get from experts in the field can be shared with your doctors, it can't possibly hurt to have more - current - information to work with.

         

        Best wishes.

         

        - WBF

      • Re: Can anyone with experiences of severe AML share their thoughts on this?
        KyGuy Registered Users
        Currently Being Moderated

        A couple of years ago there was a patient from Australia who needed a cord blood transplant and was sent to the Hutch since they had the most experience.  I know it was a struggle for them to get to Seattle but their doc helped to make the arrangements.  Hopefully, your doc can help you as well.

         

        Take care,

        Kelly

  • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
    Hammerdog Registered Users
    Currently Being Moderated

    I had AML with the FLT3 ITD.  My prognosis was given as 20% survival with an auto SCT and 40% with an allo.  I am now almost one year post allo sibling SCT.  My doctors at Sutter Sacramento shipped me to UCSF for my SCT.  I am doing fine so far with the new bonus disease of cGVHD.  There is always a chance of relapse but I am hoping that there is a component of GVL from the cGVH.  I should be getting a biopsy in a few weeks and I'm hoping to be in the clear.  The FLT3 ITD is a nasty variant but so far I am one success story.  Hang in there.  The science is making new headway every day. 

     

        Mike

  • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
    moon12 Registered Users
    Currently Being Moderated

    Hi all,

     

    I havent been on the forums for a while, but here's what I've found out so far.

     

    I asked my doctor about sorafenib. It's a very new drug for AML FLT3 IDT treatment. It's not even in the list of clinical trials for my country (maybe next year). The doctors I talked to said it wasn't registered, or something. That means I can't buy or access or purchase this drug.

     

    They don't want to use this drug because it could change my current chemo/treatment. They said that they are confident with my current standard treatment.

     

    They don't know if sorafenib would affect a patient with a chromosome abnormality (7:11 for me) + FLT3 IDT. It  has only been documented to work with normal chromosomes + FLT3 IDT. Also, it hasn't been used for long. They don't know an effective combo with other chemo.


    It's a very good drug, but I can't access it, unfortunately. Im not sure if I would, if I had it.

     

    I ll email Estey and Hutchinson, and ask their opinion about it. So far, it's only been used on relapsed patients. It prolongs remission for a chance of getting a BMT. But sorafenib doesn't cure AML.

     

    I've been to busy lately. I'm going to have a BMT soon.

     

    I don't think I'd want to transfer to them. Im already nearly finished with my treatment. There's little they can do different, since my doctor told me that there is a big team of haematologists working on my case. They read international articles and know quite a lot. Only thing im worried about is if there is a specific treatment for 7:11 abnormality AML.

     

    Goodluck everyone.

     

    Is there a reason why I should specifically go to Hutchinson?

    • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
      willowbayfarm Registered Users
      Currently Being Moderated

      Hi Moon,

       

      My understanding of the sorafenib is that it won't cure the AML, but it does help some individuals avoid relapse so they can make it to transplant and go into the transplant itself with a durable remission.  What digging around I've done about the 7:11 translocation is that there is a tendency to relapse, so the plan to get you to transplant seems sound. 

       

      I wish you well in your transplant journey, let us know how you're doing if you feel up to it.

       

      - WBF

    • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
      mking Registered Users
      Currently Being Moderated

      Hi Moon,

       

      A relative of mine has been diagnosed with AML FLT3-ITD and NPM1. We are also in QLD.

       

      Your Doctor said you have a 70%-80% chance with at 40% overall cure rate.

      You said you were a bit confused about those numbers.

      I believe he is talking about the BMT 70%-80% , and then a relapse rate of 60%, hence 40% overall cure rate.

      Those numbers are not great but they are better than some.

      Also remember there are advancements all the time, and trial drugs and treatments. So the longer you stay alive the better chances are, of you getting a cure if you relapse.

       

      I don't know if your (7:11) will effect your final outcome however if you are having your bone marrow replaced I would think your faulty (7:11) would be replaced with the donors working chromosomes.

       

      The main reason patients relapse is some of the patient bone marrow is left behind after the chemo and radiation therapy. If they could get rid of 100% of the faulty bone marrow the relapse rate would be a lot lower.

      However removing 100% of the bone marrow with chemotherapy would kill most patients. We need something better. we need nano-technology, but it's many years away unfortunately.

       

       

      Moon, by now you have probably ask all these questions to the onco's at RBH, if you have anymore info please get back to me.

       

      Best wishes Moon. Get well soon .... And don't relapse.

       

       

      ** Disclaimer - I'm not a Doctor -- Please consult your Doctor to confirm anything I have said above. **

  • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
    JulieSRando Registered Users
    Currently Being Moderated

    Hi Moon12-

     

    I was diagnosed with AML with the FLT3 mutation. That was back in Oct of 2008. It is a very scary diagnosis. I too have hunted around on the internet for info on FLT3 because it is so hard to understand exactly what it is. Everywhere you look, it says, "poor prognosis". My doctor taught me long ago, do not look at the internet. I have also learned that statistics are just statistics. Each and everyone one of us is so different. Statistics lump everyone together. But, the fact that you are young, just like I am, gives you a leg up. You can take all the treatments they throw at you. Our stories sound similiar. I too didn't go in to remission on my first induction but did on my second. I received my transplant (thanks sis!) on Jan. 7th 2009. In a few short weeks I will be celebrating my 2nd birthday. I have not relapsed (thank god) and my GVHD, while troubling at times, is on the mild side. I am back to working full time, being a wife and mother, working out.....I have, for the most part, gotten my life back. So, people do survive AML with FLT3.

     

    Stay strong and let me know if you have anymore questions.

     

    Best, Jules

  • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
    tillmansarah Registered Users
    Currently Being Moderated

    Hi! I'm Sarah. I am a 20 year old female and I am a newly diagnosed Acute Myeloblastic Leukemia patient with the FLT3 mutation. I achieved complete remission in my first round of chemo. However, I am on a clinical trial for the drug called Bortezomib this is a antineoplastic drug and I believe it has aggressively treated my cancer along with Cytarebine, Daunorubicin, and Etoposide. I am waiting for the results of my second round of chemo in my minimal residual disease test. Hopefully it will be another 0.00% and I can continue my chemo cycle WITHOUT a BMT. I'm here to tell you that FLT3 isn't as scary as they make it sound. Everyone's AML is different. I hope since this post has been made you are a happy, healthy individual! You are young and that makes your chance at survival immense! Much Love and Hope. We will find a cure for Leukemia!!

    • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
      tadly Registered Users
      Currently Being Moderated

      I'm also newly diagnosed with AML FLT3 IDT higher risk abnormalities. for my m5 subtype the FLT3 is not unusual.  I'm 64.  Last week i went through a clinical trial chemo protocol induction using GCLAC. I'm expecting the results of a BMB in a few days. 

       

      My doc had explained that a complex algorithm  had been used to give me rates of CR to compare the standard 7+3 with the clinical trial's GCLAC (clofarabine, hi-dose cytarabine and G-factor).  I understood that each would factor in the hi, interm risks of chromosomal and cytogenetic factors.   I had looked at some research targeting FLT3 but have put that aside for now.  A stem cell transplant has been part of my treatment plan.

      • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
        alexno Registered Users
        Currently Being Moderated

        Hi Tadly..my 3-year-old son has M5 but no FLT3...I just found it interesting and neat that you were on clofarabine as a couple of studies have shown that M5 is particularly succeptible to it. No idea if it could be used in kids and it hasn't come to that yet... good luck with the BMB!

      • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
        Hammerdog Registered Users
        Currently Being Moderated

        I should check in here because I am now about 28 months out from my SCT.  I have CGVH but doing fine otherwise.  I'm hoping that the FLT3 is gone.  I still have a way to go before I can get off all the drugs.     Wow, It's hard to believe it's been over two years. 

      • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
        tadly Registered Users
        Currently Being Moderated

        As an follow-up, my BMB from last week, shows that although I have the FLT3IDT unfavorable mutation cited in the article in the original post, My first induction resulted in complete remission.  There are later articles critical of the conclusions of that study.  My own doctor has researched on FLT3 and writes that there's a lot more going on with these favorable or unfavorable abnormalities.   He also tamps down my worries that flt3 will singlely and eventually rear it's head in my case.

        • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
          Hammerdog Registered Users
          Currently Being Moderated

          Hi Tadly

           

          I thought you might be Moon12 who started this thread.  He/she appears to have fallen off the planet.   With FLT3 I am afraid to ask because I have been around just long enough to realize how lucky I am.  As far as I can tell.  Survivors like me who had FLT3 are uncommon.  People like Moon12 chime in and then disappear. Moon 12 was second guessing her doctors and trying to avoid a SCT.  What I do know is that when the cancer comes back it's much more virulent and the prognosis is most often terminal.  I was told with the FLT3++ and NPM1 with SCT my survival odds were 40%.  Without the SCT then the rate dropped to 20%.  If the cancer came back then the progress is often so swift that any treatment is too little too late.

              Dr Neil Love and his Hematalogic Oncology Update podcast has been helpful to me.  It is a lot of oncologists yammering for an hour or more about blood cancers.  FLT3 is a pretty hot topic if you browse the Archives. 

            I went straight from my second induction to finding a donor.  There never was any consolidation chemo.  You don't want to take a chance of a relapse.  Your doctor needs to do more research.  There is empirical data somewhere that generated those prognostic indicators.  They don't use rats to find those numbers.  Real cases generate the grim numbers. 

            Because your doctor can't find the reason why he should dig deeper.  Not giving you full disclosure is negligence.

            Moon12 mentioned that she was impressed more with the hospital with the better survival rate.  I wanted to tell her that wonderful rates are sometimes from doctors shipping out the hard cases like me to places that take the hard cases and do not have impressive survival rates.

           

          Good luck and write back if you can.  Please

           

            Mike

          • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
            willowbayfarm Registered Users
            Currently Being Moderated

            I just wanted to throw out a couple of thoughts about this.  I think anyone who's spent time on these AML and transplant forums would agree that we need more tools in the doctors' hands to battle the particular issue of FLT+ anomalies associated with an AML diagnosis.  Since Tadly is participating in a clinical trial, he is contributing to the body of research needed to develop just such tools.  I can't recall ever seeing clorfarabine used with FLT+, and I am certainly hoping that this new approach will prove to be one that is effective in eradicating it.

             

            As far as Moon12, while it is true that we haven't heard from this individual, he/she may just be simply getting on with life and trying to put AML behind him/her.  We didn't hear from you either for a long time, but we're glad you're back and as onery as ever!  (As far as I'm concerned, being onery is a tremendous asset when confronted with something like this). 

             

            Regarding your other reply to Warrior, I really think being "determined" is far superior to trying to maintain a "positive" mindset.  The concept of being determined did so much more for me than trying to be positive, which sounded like some sort of fairy tale for folks who have never been chewed up and spit out by life. 

             

            - WBF

            • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
              Kimberlyd1967 Registered Users
              Currently Being Moderated

              After my transplant date was set I agreed and did participate in clinical reseearch study. I am a nurse and know that is the only way to get to cures! We have to push through and try different drugs and therapies. If it wasn't for the AML patients before me participating in research studies I might not be alive today! More than likely, I would not have made it. My doc started my chemo on a Friday evening. I was told if I had waited until the next Monday I would have died before that Monday. The doc said hgb 6.4 blasts over 30 and my husband would have awakened that Sunday and more than likely found me dead. It was originally scheduled for the next Monday. Research means so much. It's been 9 months and I still take pro graph twice daily.

        • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
          warrior Registered Users
          Currently Being Moderated

          Tadly,

          AML is a complex disease with over 300 mutations being associated with the disease. Some mutations make the leukemic cells more or less resistant to chemotherapy.  Flt3 is a gene for a protein that is called a membrane tyrosine kinase receptor. A very recent study looking at many of the mutations associated with AML was just published in the March 22 New England Journal of medicine.Prognostic Relevance of Integrated Genetic Profiling

          in Acute Myeloid Leukemic by Jay P. Patel, et al In the New England Journal of Medicine march 22, 2012 vol. 366 no. 12. Your treatment should be risk adapted for your cytogentics and your overall health. We are not your physician so we can not determine what is the best  treatment protocol for you. Also be advised that statistic are that just statistics and they deal with overall probabilities not your specific case. I refer you to an essay by  the famous evolutionary Biologist Stephen J. Gould on this issue http://www.cancerguide.org/median_not_msg.html.  I know this is tough. I am the caregiver to a AML patient.

          • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
            Hammerdog Registered Users
            Currently Being Moderated

            Warrior

              Thank you for that link to the Stephen Jay Gould essay and the new report about FLT3.  SJG was one of my heroes.  When I was a young biology student I subscribed to "Natural History Magazine" just to get SJG's monthly essay. 

              Some of his ideas were controversial and some others were exasperating.  His contention that religion and science might get along because of "non overlapping magisteria" was pure hooey.  His statement that a positive attitude helps victims is also very wrong.  That kind of thinking is blaming the victim.  We may put on a happy face for our family but if you are not seeing rainbows and pink unicorns from a blissful state then your cancer will creep up again. I am not saying you should fight for life the whole way.  Your mental state is not that important.  There is literature that claims to verify this notion but it is not often cited and not the conventional wisdom.  SJG did a disservice repeating that nonsense. 

              I remember reading a case history of a patient known to be the only survivor of a rare stomach cancer who was a mean, vindictive, unpleasant, and pessimistic person.  I know... one case. ( I think the case was discussed by SJG himself in one of his essays.) Where is my knowledge of statistics reflected in such a statement.  As the ever incorrigible skeptic I wonder how is it they measure "attitude".  My answer, Can't be measured.  As SJG is quick to point the finger at Southern California for woo woo he himself draws an absurd straw man dichotomy when he said,"Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect"  There is no heart and mind, there is only the mind.  Feeling and intellect are also of the mind.  SJG was often infuriating to the skeptic community.  "in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer."  I agree with most of this statement except the part about "positive attitude".  

              What I'm saying is that statistics can be deceiving but it's a good start.  No two cases are alike but by inference you can extrapolate a lot from other case histories.  Information, good or bad is power.  Grim prognostic statistics are interesting and they don't bother me when my case is intimate to the statistics.  It's empirical knowledge whereas measuring attitude is not.

              I guess if you were to sum up my attitude some people might find me a little abrasive.  When I disagree I am not likely to let it go.  I love to argue like a pig loves to slop in mud.  It comes from a large family debating around the dinner table.  Everywhere I see people unconsciously blaming the victim.  Talk about blaming victims pulls my hair trigger  and can unleash a blast of scrutiny,  I have no fear of death other than I worry how my family will take it.  I have lived a great 59 years.  I want to live as long as possible but with cancer attacking me from several fronts... let's be real.  I'm an atheist so I don't care a whit about an afterlife or how I appear to some spook in the sky.  No one would ever paint me as meek.  I was told early on by a few nurses and a hospital chaplain that I was too negative and I should happy up or it would decrease my lifespan.  Phooey!   I am my own best advocate  and do tons of research.  I ask a lot of questions and I often discuss the things I am skeptical about.  I expect the truth from my doctors and they know now not to hold back and give it to me from both barrels.  I don't care where the chips fall.  The day I was diagnosed AML I knew what it meant and my response was not anything dramatic.  I just shrugged,  OK, Now what?   If I die soon, well then, C'est La Vie. 

            • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
              warrior Registered Users
              Currently Being Moderated

              Hammerdog-

              First off I am a research biologist  and Professor (but not an evolutionary biologist) and I had the distinct pleasure of meeting Stephen J Gould and introducing him before a lecutre. He was  excellent at introducing science to the non-scientist.

              I site his article because most folks who become ill have not studied statistics and can become depressed over prognostic data...I agree that a positive attitude is not always possible but a determined attitude is necessary to battle this horrible disease. Although knowledge is power, I also learned that knowledge alone can not prevent pain and suffering.  When my partner was in the middle of her treatment for AML and fighting for her life.... the fact that I understood the mechanism of action of every drug in her body did not prevent the adverse reactions, or make the drugs work more efficiently. I also saw first hand that a "mindful" approach to life and illness can help in the healing process. I am happy that you are 28 months out from your sct!

  • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
    moon12 Registered Users
    Currently Being Moderated

    Hey all,

     

    I appologise that I haven't replied in a while. Me and my mother, however, have been reading the forums occassionally and sending prayers.

     

    It's been a long time (months, no... 2 years! since I've started on this forum).

     

    I did infact have the BMT. My past posts might have seemed illogical/silly.

     

    At the moment, I have minor chronic mouth GVHD. My mouth and gums aren't inflammed. My teeth are fine. However, I still worry that I might lose my teeth.

     

    I guess that I've lost track of time. Im continuing back to my normal life.

     

    Goodluck to all, moon12.

    • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
      Tex Registered Users
      Currently Being Moderated

      I don't remember any of your posts being silly.  I'm glad you had the transplant and are on your way to recovery.  A little mouth GVH isn't that bad a deal in and of itself.  Just take care of it and try to keep it minor.

       

      You know, I didn't even go near a computer for well over a month after my SCT.  It happens.

       

      Keep getting better and keep us informed.

       

      Blessings

  • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
    Kimberlyd1967 Registered Users
    Currently Being Moderated

    I was diagnosed march/2011 at age 44. I am an RN, and still did not realize what was wrong. I had 30 days induction and lost my job and health insurance. The hospital and docs at this hospital would no longer treat me because I had to get a state health card. I was sent to WVU Ruby Memorial / Mary Babb Randolph Cancer Center. The first physician had insinuated that I was in remission and would just need maintenance therapy occasionally.  When I went  to WVU I met Dr Michael Craig, I believe God sent him. He informs me that I had the worst type of AML that a person could have and would probably not make it a year on maintenance therapy, that I had to have BMT. He admitted me for 7 days consolidation. While I was there he sent stem cell kits to my siblings. About a week after getting home I was at the local cancer center (WVU is 3 hours from my home) my cell phone rang and it was the BMT coordinator, she informs me that my older brother and younger sister were both matches but that they were going to use my brothers cells because women's stem cells aren't as strong & do not take as well because immune system is effected when they have children. I asked how much more chemo before the transplant and was told I would receive cyteribine for 5 days, rest day 6, transplant day7. The ironic thing I thought was that on July 5,2011 I was taking my nursing boards test, on July 5,2012 I was lying in bed receiving a stem cell transplant. In my experience I have lost my hair ( which is now 2 or 3 inches long), chemo took my teeth recently bad from inside out so now have dentures, it has put me through menopause which is fine... I am a grandma and could not have anymore children. It has been  almost 9 months, I ave been 100% donor cells with every test. Only serious problem was when teeth was pulled was given pcn, I had allergic reaction to it and found out my brother is allergic to pcn and I have his cells so now I am. The rash is gone and I thank God, my Dr and my brother every day. My question is this: is this a cure? No one wants to say yes. I was told to go 2years without problems and no graft vs host disease and I would probably live out my normal life, but Dr will not say that, it was a nurse that has worked there for years, she told me she and the Dr could not say cure be ause there is no cure for cancer. I would like to hear about people who have lived years ... Long time after BMT.  Cancer society page had followed like my case without problem for 11years so far.... Is there anyone that's lived longer than that? I just know I will always be sacred in the back of my mind. Thank you for any response, I am not complaining believe me, I pray for all who are still in treatment daily. I am grateful for what I have.

    • Re: Can anyone with experiences of severe AML FLT3 IDT + share their thoughts on this?
      Tex Registered Users
      Currently Being Moderated

      There is a disagreement withing the hem-onc community as to whether AML is ever cured or just goes into a reliable remission.  That some folks have relapsed more than five years after treatment casts some doubt on the word "cure."  That might be the source of your doc's hesitation or it could be s/he's simply working from a wait and see perspective.

       

      The bottom line is we're all shooting to be here tomorrow and we hope to do just that.  Still, the record does indicate that in the vast majority of transplants, the difference between 30 months and five years is nominal.  If you make it 30 months (or even two years) you're pretty much home free.  There are just always exceptions.

       

      Hope this helps sort that out.

       

      Blessings

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