The Leukemia & Lymphoma Society - Fighting Blood Cancers
19 Replies Latest reply: Apr 30, 2012 6:57 PM by Kimberlyd1967 RSS

Can anyone who had AML and had a SCT/BMT tell me

Amys4304 Registered Users
Currently Being Moderated

Can anyone who had AML and had a SCT/BMT tell me what it was about your particular disease that required a transplant (compared to chemo alone). Was it your subtype? High risk? intermediate risk? And how easy or hard was it to make this decision?

Thanks,

Amy

  • Re: Can anyone who had AML and had a SCT/BMT tell me
    mamawarrior Registered Users
    Currently Being Moderated

    My son was aml m5, he had 5 rounds of chemo and was in remission 14 mos. then relapsed. Transplant was an easy decision. There was no other option, chemo did not work inspite all they threw at him, he wanted to live and transplant, for him, gave him the best and probable only chance at survival.

  • Re: Can anyone who had AML and had a SCT/BMT tell me
    KyGuy Registered Users
    Currently Being Moderated

    Amy,

     

    I had AML M5.  I had 2 rounds of induction before remission.  I was in remission for 4 months and relapsed.  Again, 2 rounds of induction to get to remission and then an SCT.  For me the choice was easy.  Since I relapsed, I could count on another relapse in a shorter period of time.  I wanted to live and the fight was worth it.

     

    Take care,

    Kelly

  • Re: Can anyone who had AML and had a SCT/BMT tell me
    warrior Registered Users
    Currently Being Moderated

    Amy,

    my partener was dx with AML normal karyotype, NMP1+ in March. She received an autologous SCT the end of July. Dan (see Dan'swife) also was treated with the same protocol for AML. This is an experimental protocol. Her Doc thought she had a good chance of remaining disease free for an extended period of time with this treatment. If she were to relapse she will then have a allo SCT. Kathy has been HLA tested and her 2 brothers joined the bone marrow directory and have  been HLA typed also ( I do not know if thery are a match).

    • Re: Can anyone who had AML and had a SCT/BMT tell me
      Amys4304 Registered Users
      Currently Being Moderated

      Thanks for the response. I would also love to know from anyone who reads this-if you were normal chomosomes or abnormal, and if you were favorble, unfavorble, or intermediate risk. I was told that I am intermediate with no abnormalities. Just trying to understand this all better:)

      • Re: Can anyone who had AML and had a SCT/BMT tell me
        kathydeang Registered Users
        Currently Being Moderated

        Hi, Amy.  I had a stem cell transplant for AML 1.5 years ago.  My husband and my brothers paid attention to the details, so I can't tell you a lot, except that I did have an abnormal chromosome...or else I was missing it altogether.  Now it is "back" and fine.  I was anemic, and that was "cured", too.  My labs are great and I am very happy.  I had no choice about the SCT...they told me I would have approx. 3 months to live if I didn't do it.  It was not fun, the STC, but I would do it again in a heartbeat if the leukemia comes back.  The fear of it is much worse than the actual event.  Hope this helps.

         

        Kathy

  • Re: Can anyone who had AML and had a SCT/BMT tell me
    danswife Registered Users
    Currently Being Moderated

    Hi Amy,

     

    I'm "danswife" as Warrior mentioned in the post above.  Dan was dx'ed in January 2010 at age 32 (33 now) AML, M4 npm+, flt3-  His cyto's were normal.  The npm+ & flt3- combo put him in a good risk category.  He could have gone with induction plus 2-4 consolidations or Autologous SCT. He presented with very low hemoglobin, but his platelet and WBC counts were all within pretty normal limits and his blast count was hovering right around 21-30% when he was admitted for induction chemo back in February.  He didn't present with any infections or fevers...just signs of severe anemia.   We think Dan would have fared well with "just chemo" as many folks have BUT we looked at transplant as the icing on the cake, so to speak.

     

    Darcy

    • Re: Can anyone who had AML and had a SCT/BMT tell me
      Amys4304 Registered Users
      Currently Being Moderated

      Kathy, yes that helps-everyones exp. has helped me.

       

      Darcy, My wbc were slightly above normal, but I was also pretty anemic. I presented with what I thought was a strep throat. Not sure about flt3, althought two hospitals believe I am negative. Normal cytogenetics and most likely M4. Ok so I'm placed in this lovely intermediate catagory. From what I understand if your placed in favorable-doctors advice chemo alone. If your unfavorable- doctor say you MUST have transplant. But here I'm in the intermediate catogory where my doctors say-we suggest transplant, but its your decision. UGH! I cant make a decision as to what kind of ice cream to order. I was told my chances of relapse are about 55%. One hospital is pushing for it whereas the other hospital is on the fence.

      • Re: Can anyone who had AML and had a SCT/BMT tell me
        moon12 Registered Users
        Currently Being Moderated

        Amy,

         

        I don't want to make an impact on your decision, but:

         

        A BMT during the first remission gives you a better chance of not relapsing, than trying a BMT after a relapse.

         

        It gets harder each time you relapse. Although a BMT might give you a better chance, it is a risky procedure (with mortality, etc).

         

        My specialist based the prognosis group on the chromosomes, mutation and if the induction chemo worked (7+3).

         

        Normal chromosomes put you in an intermediate scale. Having mutations like some types of FLT3 puts you in a poor scale.

         

        It's all averaged out. Mutations are more important prognosis indicators, I think.

         

        A good prognosis groups sometimes have a 70-90% chance of survival. A BMT could put you near there. Ask your specialist.

         

        Different hospitals have different opinions, approaches and techniques. Therefore, I could be wrong.

         

        Good luck!

      • Re: Can anyone who had AML and had a SCT/BMT tell me
        pamd Registered Users
        Currently Being Moderated

        Amy, I was originally given the option of chemo alone, which i chose. My AML wasn't considered a favorable case, tho, nor was it thought to be unfavorable---my particular chromosomal abnormality is very rare, seldom seen in Leukemia (Trisomy 10, other trisomies are much more common) so it was difficult to place it anywhere with so little data. Therefore I was put in the "intermediate risk" category but more by default than anything else. And, as I said, chemo alone was recommended for me.

         

        But I did relapse 2 years later, and I was lucky to get that two years, because I believe relapse was probably inevitable at some point for me. Yes, there are people who never relapse, we have some on this site. But I think that's far less common. I feel like I "bought time" by doing the chemo-alone approach, but relapse did happen, and that was far more devastating than the original diagnosis, even though not unexpected. I knew, as Moon12 said, that it would probably be harder to get into remission---which it was. Not terrible, I just went thru two rounds of induction chemo instead of the one I needed the first time, but it was tougher. And that was after a two-year remission-----so I was able to use some of the stronger drugs again, like Idarubicin, that I had taken the first time. If a person does chemo alone, then relapses after only a few weeks or months, often those more powerful drugs aren't options because it's too soon for the potent effects they have on other organs, like the heart, to use them again.

         

        So I consider myself lucky to have gotten as long a remission as I did, but there's no way to predict that. My gut feeling is that if they are so strongly suggesting you have an SCT/BMT, there's probably a reason for that. I would ask every question about why, though, and certainly seek another opinion, if only to confirm that the first opinion is a wise one. Your insurance company will likely gladly pay for that second or third opinion, as they really want to spend the big bucks wisely, too. Mine encouraged me to get a second opinion at their expense.

         

        BTW, I had a BMT, not SCT, 27 months ago, and it could not have gone better. Life is normal again, working, playing, everything great. But you are right, a transplant carries risks, no question---but it also can offer the greatest hope to the disease not coming back, as mine eventually did.

         

        Anyway, just my musings on the subject--good luck making your choice, keep us posted. I know this is not an easy time with such a weighty decision---we are here for you!

         

        Pam

      • Re: Can anyone who had AML and had a SCT/BMT tell me
        willowbayfarm Registered Users
        Currently Being Moderated

        Hi Amy,

         

        Where are you as far as determining if you have a matched sibling for a donor?  That was what pushed my recommendations back the other way towards no transplant - I didn't have a sibling available for a donor.  I presented with AML M5, with a translocation of 9:11, the 11q23 MLL anomoly, and trisomy 8.  I was fortunate in that the 9:11 translocation tends to modify the very negative impact of the 11q23 MLL thing - it's the only translocation that does so, and having that particular translocation pulled me back up into the intermediate risk category. 

         

        Did the other doctors you consulted with have any opinions as to whether the strep throat was an extramedullary presentation of AML as we discussed in your other thread?  Extramedullary disease might well impact the decision of whether or not to go to transplant.

         

        By the way, my personal statistics from my transplant consult was 75% chance of relapsing if I went with chemo alone.  But - knocking wood - I'm still around and in remission, nearly two years later.  I figured, someone has to be in that good percentage of folks who don't relapse, and I might as well be one of them!  

         

        Maybe the thing to do is do a phone or email consult with yet another major cancer center that specializes in leukemia and transplants as a way of breaking the "tie".  Right now you have one of each opinion, so perhaps one more opinion would make it easier to decide which way to go.

         

        Wishing you the best with whatever you decide.  Please keep us posted, and we'll support you either way.

         

        - WBF

         

         

         

         

  • Re: Can anyone who had AML and had a SCT/BMT tell me
    leahamarie Registered Users
    Currently Being Moderated

    My son was diagnosed with AML in 2002 at age 3.  The protocol the hospital was using at the time called for standard and poor risk patients with  a matched sibling to undergo bmt. We had a matched sibling.  To encourage us to do the bmt the hospital presented us with the hospital statistics.  Only 40% cured with chemo alone versus chemo + bmt - 80% cured. We went to transplant. My son is now 8 years and 11 days post transplant and well.

    • Re: Can anyone who had AML and had a SCT/BMT tell me
      Amys4304 Registered Users
      Currently Being Moderated

      Moon12, Thank you. Don't worry about impacting my decision- I need it to be impacted:)

       

      Pam, I think about your experience with transplant often and hope to have the same experience.

       

      Leahamarie, I hope yourt soon is doing well. Please keep me posted

       

      A question for anyone with AML--what type of chemo is used? And yes a more superficial question--did you lose eyebrows and lashes. I lost my hair with induction, but not lashes or brows. I'm sure they will be coming out with SCT. How long before they came back? This is just very scary to me.

      • Re: Can anyone who had AML and had a SCT/BMT tell me
        warrior Registered Users
        Currently Being Moderated

        Amy,

        Kathy had the same protocol as Dan but her initial hospitilization was 43 days not 20. She lost her hair after the first round of chemo. She went to a workshop sponsored by the ACC on make up and wigs and scarfs post chemo.  She bought a wig that insurance half covered "cranial prosthetic". This helped  deal with her "cancer" look. She however only wore the wig after first chemo before  the consolodation round. The chemo for the SCT was brutal and she lost all body hair, eye lashes and eye brows. 77+ she has her eye lashes back and her eye brows ( a little) no sign of head or body hair yet. She has not put her wig back on. Her recent comment" I rather be bald and cancer free"...

        Did you get any information about the molecular characterization of your disease? This could help your decision process alot. Both Kathy and Dan were normal karyotype nmp1+ and FLT3-.

        this is now a new favorable prognosis. But 5 years ago they would have been lumped with all normal karyotypes. If on the other hand you are FLT3+, the chances of a relapse are MUCH higher.

        If KAthy were FLT3+ her doc would have recommended an allo transplant, but recent data for nmp1+ ( a recent new england journal of med article) suggests that an allo does not improve your statistics for being disease free BUT it does for flt3. I can look up the article for you and give you the reference. The other variable that has been mentioned is the availability of a sibling match or mud match.  You should get a third opinion. Even though I was happy with Kathy's care I had 2 phone consultations with leukemic experts at JHU and U of chicago. I was ready to contact DAna farber , the Hutch or MD Anderson if there was some discrepency in the advice I received. Good luck with your decision. Make it based on medical advice. Your hair, eyebrows, and eye lashes will grow back. those who know you and love you will think you look beutiful with or without hair.....

        • Re: Can anyone who had AML and had a SCT/BMT tell me
          Amys4304 Registered Users
          Currently Being Moderated

          I will be admitted to hospital this monday for second round of consolidation. I believe at some point during my stay I will find out if siblings were a match. I have one brother and one sister. As far as the strep throat--both hospital mentioned the leukemia being in my mouth. I have to get a clear answer. I went for second opinion on tues and will be going for a third. I have three great hospitals in my area. My primary hospital is over the fence with the transplant where as univ of Penn is on the fence. UGHHHHHHH how does one make this decision??? I really am positive and not letting this leukemia thing bring me down, but this decision is rough.

           

          Warrior, you asked about molcular characterization-- my hospital made a big mistake and never tested for flt3, but both universities told me they believe I'm negative. Normal chromsomes. I was told on my second opinion that my primary hospital used a test called FISH, which test futher for abnormalities and still negative. After he said that he said, "you have a tough case". I guess this is because it just a great big grey area. You seem to be really educated on this stuff. If you could think of any questions I can ask-let me know.

           

          The hospital that is treating me now (Thomas Jefferson University) says if siblings are not a match they would rather see me do half/haplo match then MUD, whereas Penn said if I can't find a related or unrelated match they would rather see me stick to chemo then do half/haplo. So thats the biggest conflict between the two hospitals

      • Re: Can anyone who had AML and had a SCT/BMT tell me
        mamawarrior Registered Users
        Currently Being Moderated

        My son had normal cytogenics which put him in the intermediate group but had cns involvement and a very high wbc on diagnosis that put him high risk. But because of no sibling, he did go with chemotherapy alone and unfortunately relapsed.

         

        What scared me beyond the terror of relapse was when the oncologist said 'IF we can get him back in remission' .  What do you mean 'if'? The possibility of not getting back into remission had not even crossed my mind, he attained remission easily the first time. Fortunately, he did go into remission after induction but i will never forget a mother on these forums whose adult daughter chose to do chemo alone, relapsed shortly after and could not get back into remission. So, one thing i would question the oncologist, If you do relapse, how confident is he that you would attain remission again.

         

        I know this is such a tough decision, some do stay in remission on chemo alone and it weighs on your mind, could i be the one. It would not hurt to get a 3rd opinion, aml is serious stuff, the treatment is, and so is transplant.

         

        Whatever decision you make, we are here to cheer you on.

         

         

      • Re: Can anyone who had AML and had a SCT/BMT tell me
        KyGuy Registered Users
        Currently Being Moderated

        Amy,

         

        My conditioning chemo for my transplant was fludarabine and busulfan.  Other than fatigue, they didn't bother me too much (at least that I remember).  They gave me a "day of rest" between the chemo and the transplant.  It ended up being a very boring day.  I was wiped out but otherwise felt ok and was ready to get the show on the road.

         

        Fludarabine makes your cells stupid (in the words of my nurse).  The the busulfan wipes them out.  I had 4 days of each.  Busulfan will do a number on your hair.  It wiped out all of my hair and it was a long time (5-6 months) before it came back.  It's very thin now.  My grey didn't come back at all - I guess that's all the bald spots.

         

        Take care,

        Kelly

  • Re: Can anyone who had AML and had a SCT/BMT tell me
    danswife Registered Users
    Currently Being Moderated

    Amy,

     

    Dan's Chemo Meds for Induction were: Cytarabine, Daunirubicin, Etoposide.  It is sometimes called 7+3+3.  He was in the hospital for 20-couple days.  That put him into remission

    Consolodation Chemo (one round) was: Cytarabine and Etoposide.  Chemo was administered over 4 days.  He was in the hospital for 5 days.

    Conditioning (prep for transplant) Chemo was: Etoposide and Busulfan.  He was in the hospital 7 days prior to transplant and then about three weeks after.

     

    Dan lost his hair during induction chemo.  A few days after his transplant, he grew a beard and mustache (suddenly) and then he started losing the new growth, his lashes, and his eyebrows.  He didn't have a spec of hair on him for a little while.  I'd say by 3 months post-transplant, he had gotten a full set of brows, lashes, body hair, and he has about 1/4-1/2 inch long full head of hair.  Since you are female, the hospital will more than likely put you in touch with one of the volunteer organizations that provide make-up, make-up tips and wig advice.  There are programs to make women feel good on the inside and out.

     

    It's a long, hard fight sometimes Amy.  The end result is well-worth it though.  A new chance at a healthy life!  Everyone here (cancer fighters, caregivers, etc) will tell you anything you need/want to know about their own experience.  Yours may be similar or you may set a whole new bar for recovery As for statistics...I think they are total B.S.  They are throwing numbers at you that are the result of data compiled over a decade ago.  If you do belive their data, than just consider yourself in the percentage of people that live, totally rock their transplant, and continue to have a wonderful life.

     

    Take Care,

    Darcy

  • Re: Can anyone who had AML and had a SCT/BMT tell me
    peejay Registered Users
    Currently Being Moderated

    Amy,

     

    I had aml subtype 4 with no chromosomal abnormalities. I was an intermediate risk. My doctor recommended chemo alone, and to wait to see if I needed a transplant in the future, which I did. My remission lasted 13 months.

     

    I don't regret my decision to wait. The only complication was getting back into remission which can be difficult after relapse. Some patients never do, then can't have a transplant or do anything really.

     

    BTW, I needed a 2nd transplant but am doing well 14 months later. So, transplants, although rough, do save lives. Good luck deciding.

  • Re: Can anyone who had AML and had a SCT/BMT tell me
    Kimberlyd1967 Registered Users
    Currently Being Moderated

    I was extremely high risk AML. I was informed that I would only survive until chemo stopped working which was approximately 1year. There was no option, my brother was as good a match as there could be as far as the doctor was concerned and on July 5, 2011 I had SCT. I have been 100% donor since first chimerism test which was 2 months post transplant again 3 months later and again 3 months after that. I also know I nev was allergic to anything and now I am allergic to same things as my brother, the donor. I take and know this is the best possible scenario. I try to stay stress free, eat right and have moderate exercise.  Stress free is extremely difficult if not impossible. My SCT was my only hope. My younger sister was also a match, I know how lucky I am, I cannot forget friends I made in hospital with no donor. I pray for them daily. Hope this helps you.

More Like This

  • Retrieving data ...

Legend