AML (acute myelogenous leukemia) ~ Help!

TRISHAKA
TRISHAKA Member Posts: 1
edited May 2012 in Leukemia #1
A very dear friend was diagnosed with AML. He is 39. He came in to the hospital very very sick and was not given much chance. He has been here for about a month now and went through his first round of chemo. He made a miraculous recovery! (Praise GOD!!) So far, he is showing remission, but has to have another bone marrow test tomorrow. We are all so confused, because here we thought he was going to get a mini break to go home and relax for a few days. We are being told he will be in the hospital at least a couple more days and then will have to return soon for a BMT. I have so many questions. I need advice from anyone who has gone through all of this. Should we try natural alternatives?? Do we HAVE to do more chemo and a BMT??? Please give advice if you know anything about these matters. You may e-mail me at psalmciii@yahoo.com God bless!

Comments

  • dekeross
    dekeross Member Posts: 1
    #2
    I have been dealing with AML
    I have been dealing with AML sub-type 1 since January of this year. I think you may have misunderstood. After the initial chemo (takes about a month to do and recover) they do a BMB (bone marrow biopsy) to make sure there are no blasts in his white cells. Then (usually and most likely) he will start consolidation chemo 3 or 4 times (5 days each month is what mine is, 1 day on 1 day off). After the consolidation is finished they will do another BMB to see if he is still in remission and go from there. A BMT (bone marrow transplant) is kind of a last resort if the chemo does not work. Depending on your friends c-kit test (positive is good) chromosome trans-locations ( 8,21 is good) and fish test (positive is good) chemo might be better then a BMT. For a BMT it is best to have a true sibling for correct match. If not he will have to go on a anonymous donors list and wait for a match. This could take a long time and from what I have heard it is still dangerous. Hope any of this helps and wish you friend the best of luck.
  • katiekatjacob
    katiekatjacob Member Posts: 8
    #3
    you are okay!
    Even though this is such a scary time, you can rest assured that the survival rate for AML is actually relatively high! Your friend has good chances if he takes care of himself. Bone marrow transplants are a really good option, and he should start talking to his doc immediately about whether or not that option is right for him.
  • duffymn
    duffymn Member Posts: 1
    #4
    AML
    I'm not sure how the protocols differ between children and adults but my 12 year old daughter just finished with 4 rounds of chemo for AML. Each round takes approximately 4-6 weeks depending on how quickly they recover their counts. After each round, my daughter would have a bone marrow biopsy and a lumbar puncture to determine if there were any cancer cells left in the bone marrow or spinal fluid. We were blessed to be in remission after the first round (you will find this out after that first bone marrow biopsy) but still had to go through 3 more rounds of intense chemo to ensure the cancer wouldn't return. We only had a day or two home between the first and second rounds because of fevers and infections but had much more time at home after each round after that. The difference between AML and ALL is that with AML, you are NOT home much during treatment because the intense chemo zeros out the immune system for longer periods of time and it is dangerous to be around germs or get any infections. With ALL, the treatment is less intense but lasts a longer period of time (up to 3-4 years in kids). I hope this helps. I would love to hear from any childhood AML survivors.
  • pimmsm
    pimmsm Member Posts: 1
    #5
    BMT
    Hi, I'm writing from the other side of a bmt or actually a stem cell transplant. I had a bone marrow biopsy on Monday the 4th of June and it showed no signs of leukemia, six months out. I was told that the aml gene involved 6/11 was a death sentence without it. The sooner you can set it up the better. I had a total of 4 chemos before the sct and 2 of them almost killed me. Good luck and God Bless and keep you both. Pam Moya
  • AMLBMTSURVIVORSWIFE
    AMLBMTSURVIVORSWIFE Member Posts: 9
    #6
    AML BMT
    DONT GO FOR NATURAL THERAPHY OR ANY OTHER SORT. DO WHAT EVER THE DOCTORS HAVE ADVICED YOU. MY HUSBAND WENT THROUGH BMT FOR AML IN 2009 IN TATA HOSPITAL MUMBAI. HE HAD EVERY POSSIBLE COMPLICATIONS.WAS EVEN SAID TWICE THAT HE WILL NOT SURVIVE BUT THANKS TO GOD HE IS BACK HOME NOW. JUST GAVE HIS FIRST DOSE OF VACCINES. TATA HOSPITAL IS GREAT FOR THIS.
  • xuelan
    xuelan Member Posts: 23
    #7
    dekeross said:

    I have been dealing with AML
    I have been dealing with AML sub-type 1 since January of this year. I think you may have misunderstood. After the initial chemo (takes about a month to do and recover) they do a BMB (bone marrow biopsy) to make sure there are no blasts in his white cells. Then (usually and most likely) he will start consolidation chemo 3 or 4 times (5 days each month is what mine is, 1 day on 1 day off). After the consolidation is finished they will do another BMB to see if he is still in remission and go from there. A BMT (bone marrow transplant) is kind of a last resort if the chemo does not work. Depending on your friends c-kit test (positive is good) chromosome trans-locations ( 8,21 is good) and fish test (positive is good) chemo might be better then a BMT. For a BMT it is best to have a true sibling for correct match. If not he will have to go on a anonymous donors list and wait for a match. This could take a long time and from what I have heard it is still dangerous. Hope any of this helps and wish you friend the best of luck.

    Would love to correspond with you
    Have had a BM transplant and would like to talk with you.
  • pat1980
    pat1980 Member Posts: 1
    #8
    Trust God
    I'm 32 years old. im also AML m5 . i,m on my 70th day after BMT. so far have some GVHD. but controlled by the grace of God. email me if you have any questions. at papagetty1@yahoo.com
  • rosy15
    rosy15 Member Posts: 1
    #9
    duffymn said:

    AML
    I'm not sure how the protocols differ between children and adults but my 12 year old daughter just finished with 4 rounds of chemo for AML. Each round takes approximately 4-6 weeks depending on how quickly they recover their counts. After each round, my daughter would have a bone marrow biopsy and a lumbar puncture to determine if there were any cancer cells left in the bone marrow or spinal fluid. We were blessed to be in remission after the first round (you will find this out after that first bone marrow biopsy) but still had to go through 3 more rounds of intense chemo to ensure the cancer wouldn't return. We only had a day or two home between the first and second rounds because of fevers and infections but had much more time at home after each round after that. The difference between AML and ALL is that with AML, you are NOT home much during treatment because the intense chemo zeros out the immune system for longer periods of time and it is dangerous to be around germs or get any infections. With ALL, the treatment is less intense but lasts a longer period of time (up to 3-4 years in kids). I hope this helps. I would love to hear from any childhood AML survivors.

    AML M2

    Hi, was so inspired by your story as my son had the same protocol with your daughter's. Glad to know she's fine. my 6 year old son was diagnosed with AML M2 - t(8:21) last August 2014, he had gone 1 induction and 3 consolidations. After induction,his BMB showed 1% blast, he is in remission according to the docs., after 1st consolidation 3% blasts were seen, then after 2nd consolidation, BMB showed 4% blasts. He just finished his 4th consolidation last week and BMB is scheduled next month. he is still in the hospital for possible platelets and blood transfusions and for recovery. He also had gran stain gocci bacteria because of 0 ANC and received antibiotics. Thank God he is fine.

    I just want to know is 4% safe or still in remission? The doctor said as long as it is below 5%, it is in remission. Just want to understand clearly if still having blast after 3rd chemo is normal or in remission as long as it is below 5%? What to expect after this? Sorry for having so many questions.

    He is in good condition after his 4th chemo. (High dose ARA-C and etoposide). Im keeping my hopes up and pray that everything will be fine. Hope to hear from you.

     

    Blessings

     

     

     

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