AML Leukemia

13

Comments

  • xuelan
    xuelan Member Posts: 23
    Lolly29 said:

    My brother
    My brother was diagnosed with AML on March 28, 2011 . His first round of chemo brought him close BUT not in remission. He is undergoing stronger chemo now. Does he have a shot at remission this time around? He had so many side effects last time...i shudder to think what this might bring ( almost operated on bowel, fungal infection, hallucinations from anti-fungal medicine, etc.) Are there people out there who went in to remission the 2nd time around? He was given the news that there is a "donor" for bone marrow with 10/10 markers.

    Chills
    Lolly. I am curious about your brother's experience. I got chills when I saw his diagnosis date. That was the same as mine. March 28, 2011 and my parents' 63 anniversary. And your name is my sister's nickname.

    I would love to tell you what happened with me (very similar to my story). In fact, if I didn't know better, I would think you ARE my sister. Is that you Leeg?
  • xuelan
    xuelan Member Posts: 23
    naome1104 said:

    AML Survivor without BMT?
    Hi Everyone,



    I was just recently diagnosed with AML and had gone through 3 chemo cycles already. I'm currently in remission right n ow and my doctors advised is to have a BMT. But, it is very expensive. My doctor says it cost 4Million :( (I'm in the Philippines by the way). There is no way in this world we can find that money becuase I'm one of the people who work for a leaving type. So, I'm wondering if anyone o you here survived AML without going through BMT?

    Your thought is very much appreaciated.

    Thank you,
    Naome

    What did you decide?
    I had a BMT. Would like to talk to you about it.
  • xuelan
    xuelan Member Posts: 23

    first induction failure
    My 48 year old daughter just had a failure of first induction for AML. She will start a second in a week or so. I, too, would like to know if anyone has survived after a course like this. I feel horrible

    How did thngs go with your daughter?
    I hope all went well.
  • overland_traveler
    overland_traveler Member Posts: 3
    xuelan said:

    What did you decide?
    I had a BMT. Would like to talk to you about it.

    I had a BMT after being diagnosed with AML M2
    Hi there,

    I would love to talk to you about the BMT. I would not have survived if I had not had a BMT, as my AML was quite advanced and my cytogenetics were not good. It is an expensive and painful process, and may or may not be for everyone. I will not do any other procedures, and if the AML comes back (I am in remission), then that's it. Hospice and leaving this earth. Between the chemo and the bmt, I have had too much trauma to my body.

    Please let me know if there is anything I can do to help.
  • rita54636 said:

    Hello i just read your message to Bobby. My name is Rita and i just found out on Christmas that i had AML. I have M2 i really have no one to talk to and have been looking for people to talk to and help me through the tough times that i am going through. I would really like to hear from you. Thank you

    bmt for aml
    HI Rita,
    its been many years now for you .hope all is well. my husband went through bmt for aml m2 in 2009. he is now fine after all possible complications including pneumonia and GVHD on skin. he just began his re-immunization. we did the transplant in mumbai tata hospital.the doctor and his crew there is great.
  • I had a BMT after being diagnosed with AML M2
    Hi there,

    I would love to talk to you about the BMT. I would not have survived if I had not had a BMT, as my AML was quite advanced and my cytogenetics were not good. It is an expensive and painful process, and may or may not be for everyone. I will not do any other procedures, and if the AML comes back (I am in remission), then that's it. Hospice and leaving this earth. Between the chemo and the bmt, I have had too much trauma to my body.

    Please let me know if there is anything I can do to help.

    AML M2 BMT SURVIVOR
    my husband 55 had bmt allogenic from his sister after being detected with AML M2 in august 2009. after almost a failure he managed to survive by the grace of GOD. he just had his re-immunisation . he is now doing good.touch wood.
  • xuelan
    xuelan Member Posts: 23

    AML M2 BMT SURVIVOR
    my husband 55 had bmt allogenic from his sister after being detected with AML M2 in august 2009. after almost a failure he managed to survive by the grace of GOD. he just had his re-immunisation . he is now doing good.touch wood.

    your husband's BMT
    And he will continue to do well. I am approaching my first year anniversary, so he is ahead of me. The process is horrible, but the further one gets away from it, the more normal one feels. I am grateful.
  • xuelan
    xuelan Member Posts: 23

    AML M2 BMT SURVIVOR
    my husband 55 had bmt allogenic from his sister after being detected with AML M2 in august 2009. after almost a failure he managed to survive by the grace of GOD. he just had his re-immunisation . he is now doing good.touch wood.

    your husband's BMT
    And he will continue to do well. I am approaching my first year anniversary, so he is ahead of me. The process is horrible, but the further one gets away from it, the more normal one feels. I am grateful.
  • xuelan said:

    your husband's BMT
    And he will continue to do well. I am approaching my first year anniversary, so he is ahead of me. The process is horrible, but the further one gets away from it, the more normal one feels. I am grateful.

    BMT
    hi xuelan
    thanx and god bless you all will go well hubby is doing good he is now taking vaccines
  • Musette
    Musette Member Posts: 1
    marcdeman said:

    AML Leukemia t 8-21 marker 4 year survivor in remission
    Hi All,

    No one could be nearer or dearer to my heart than a fellow AML patient either undergoing treatment or years out in remission. I am not one who is short winded, but I will have to keep this message short because now after four years out and feeling pretty good like nothing ever happened after having received 7 rounds of chemo ( fludurabine,cyterbine, and mylotarg )enough to take you to the edge of death ---- currently I am experiencing pain in the joints of my hand and my feet. So much so lately than I am walking like a very old man and I recently turned 53. I just got back from a visit with my oncologist and he said everything looked ok and he would see me in another year. He said no cancer, but something is very wrong with me, I have been having drenching night sweats for the last three weeks and my joints are really hurting. My toes on my left foot feel as if they were broken. My knee hurts and my hands are swelling and hurting too. Not sure what is going on, but I sure do wish all this joint pain would end. Thank you and God Bless you all.

    Joint pain and night sweats
    Hi,
    I am 50 year old female and was diagnosed with AML in end of May of this year. I am on my 3rd round of chemo (consolidation). Will be receiving stem cell transplant of March next year. I am experiencing hot flashes and joint pain as well. But the hot flashes (night sweat) is probably due to menopause (I am guessing as I am going through menopause). As for joint pain, I am unable to find the reason that is causing the sore/pain, the doctors have said maybe that is due to other underlying health problems. Perhaps hereditary artheritis. The doctor is prescribing muscle relaxer and ointment for the soreness and pain.
  • dysunshine
    dysunshine Member Posts: 2
    xuelan said:

    Your symptoms
    I would like to talk to you about your experience. I am 10 months post bone marrow allograft. I would like to cheer you up.

    AML M-2

    Hi Xuelan

    My daughter was diagnosted with AML M-2  on Oct 12,2012, she went through  induction I and II, righ now she is in  intensification I. She got remission after induction I. Also she is enrolled into a clinical trial with  drug Bortezomib  beside ADE 10+3+5. She and her sister HLA are 6 pair match, right now we need to make a decision  for bone marrow transplant. we know BMT also has a high risk and side effects after transplant, but I heard AML relapse rate are very high.  please share your experience with AML treatment and BMT experince with us and that would be appreciated greatly.

    Diane

  • maria21grnfld
    maria21grnfld Member Posts: 1
    mary1977 said:

    AML - remission
    Hi, my name is Mary and I was diagnosed with AML M5 last Aug. 2009. I went thru extensive chemo, the induction, got all the side affects and then some, and was in the hospital for a month and 1/2. I did go thru consolidation chemo and it was just as bad as the first; if not worse. I developed three infections, one was on my face that turned into a staff infection and spread to my lungs. I had surgery on my face, and was in the hospital for 3 weeks. they almost lost me during that time because the infection spread and my pulse rate went up to 138 and fever was 103. They got me stabalized, not having to send me to ICU.
    In my mind, all full doses of chemo give you the "bad" side affects.
    I told my doctor that I was going to refuse any more chemo because I didn't want to get so sick anymore, I couldn't go thru that again. I had a 3rd treatment, but only 1/2.
    A week ago I had another BMB and this time it came back clear. My doctor said I am now in remission; but I really don't know how long remission lasts. I have heard that a person in remission still has a 50/50% chance to relaps. If this happens to me, I will accept it. Have you heard of the percentages of this disease? Or if anyone out there knows, please inform us.
    thanks
    mary

    aml - sick w flu

    Hi, my name is Maria.  I was diagnosed with AML in Aprill 2011 and had transplant in Aug 2011.  It sounds like you had a rough time.  I cannot say it was fun. Chemo sucks. However, I made it thru that and the 100 days.  I can't believe I was actually able to come back to work after 8 mos.  I have since developed some mild GVHD symptoms, i.e. dry eyes, skin rashes.  However, since October I got some flu virus and was back in the hospital for three months.  Recently, I got another flu (which I had the shot for) and was hospitalized again.  I am on sick leave now and hopefully, will be able to return to work AGAIN in a couple weeks.  I work in health care and my doctor says I should consider early retirement or disability because of the exposure I get.  I have a lot of stuff to think about.  All these meds I am on (hopefully) temporarilly, are effecting my vision and brain (forgive my rattling).  I don't know if they consider me in remission.  All I know is that after 5 yrs and clean biopsy, the likelyhood of the disease returning is much less.  We have to stay positive and embrace the time that we feel healthy.  I have all of you in my thoughts and prayers.

     

  • bananaport12
    bananaport12 Member Posts: 2
    hello

    I am doing a reasearch paper, and was wondering if i could interview you. I wont ask anything too personal, but i do need some help.

    if you can please email me back at bananaport12@hotmail.com

  • Syasharal
    Syasharal Member Posts: 1
    suzykg said:

    Hey Bobby,
    My name is Suzy. I don't live in San Antonio, but I was diagnosed with AML back in January of 2000. I also had 3 chemo treatments and am currently in remmission. I hope you are feeling well, and have a positive frame of mind. That's what kept me going....PMA, as I like to call it. Positive Mental Atitude! If you have any questions for me, ask and I'll try to answer. I had M3, Acute Promyelocetic Leukemia. I took ATRA along with the chemos ARA C and Idorubisin. I stayed on the ATRA for 1 year and have been cancer free since March of 2000. I have been volunteering to speak with other AML people at my hospital when they are newly diagnosed, that's what helped me out in the beginning. I hope that we can become e-friends!
    Let me know how you're feeling and doing!
    God Bless
    Suzy

    Hi my dad was recently

    Hi my dad was recently diagnosed with AML, after having CLL for nearly 6 years   He went through one roLDL of chemo, which was very tough on his body   After the first trtm, they did a bone marrow biopsy and found that the chemo had no positive effect what so ever.   he is so down and sad about this news and finds it very hard to feel any hope for the future   Is there anyone in the LA area who has been through AML, who can give him a pep talk to boost his morale.   He needs to continue fighting!  We need him around.   We love h so much!  Thank you

  • mzgyver
    mzgyver Member Posts: 1
    Syasharal said:

    Hi my dad was recently

    Hi my dad was recently diagnosed with AML, after having CLL for nearly 6 years   He went through one roLDL of chemo, which was very tough on his body   After the first trtm, they did a bone marrow biopsy and found that the chemo had no positive effect what so ever.   he is so down and sad about this news and finds it very hard to feel any hope for the future   Is there anyone in the LA area who has been through AML, who can give him a pep talk to boost his morale.   He needs to continue fighting!  We need him around.   We love h so much!  Thank you

    Tell your Dad to hang in there

    Just found this website today. I was diagnosed 12/10/11. I live in central Illinois. I went to Chicago University Hospital three times for chemo. Wasn't on my top 10 favorites list----but I am in remission since March of last year. I don't know how old your dad is but I am now 62. If an old broad like me can do it so can he. Keep a positive attitude. I know how had this can be on the family, I remember how it affected my kids. Together we tackled it. I wish you all well.

  • DJ Moniere
    DJ Moniere Member Posts: 1

    hello

    I am doing a reasearch paper, and was wondering if i could interview you. I wont ask anything too personal, but i do need some help.

    if you can please email me back at bananaport12@hotmail.com

    Just looking for someone to talk to

    Ive never Done anything like this But I would like to talk to someone about AML . I dont know what type I have . But I was diagnosed in September 2012 and am currently still going through the treatment process . Im just need someone to talk to . Its been really straining on the family , The only family who has stuck by me through this is My kids and wife but I dont want them to get in a tizzy worrying like I am about some questions I have about it .. Mabe someone could help me out and guide me through the rest of this process !! thank you my email address is bad4good13662@hotmail.com or you can reply here I think !! Thank you for your time as always god bless all you survivors !

  • momwithquestions
    momwithquestions Member Posts: 3
    suzykg said:

    Hey Bobby,
    My name is Suzy. I don't live in San Antonio, but I was diagnosed with AML back in January of 2000. I also had 3 chemo treatments and am currently in remmission. I hope you are feeling well, and have a positive frame of mind. That's what kept me going....PMA, as I like to call it. Positive Mental Atitude! If you have any questions for me, ask and I'll try to answer. I had M3, Acute Promyelocetic Leukemia. I took ATRA along with the chemos ARA C and Idorubisin. I stayed on the ATRA for 1 year and have been cancer free since March of 2000. I have been volunteering to speak with other AML people at my hospital when they are newly diagnosed, that's what helped me out in the beginning. I hope that we can become e-friends!
    Let me know how you're feeling and doing!
    God Bless
    Suzy

    Any Advice?

    Let's try that again.

    My 29 year old son was first diagnosed at the age of 16. He had a MUD BMT for AML. He has never dealt with his feeling about all he lost in the process. I wish there were counselors that specialized in counseling patients, and survivors. I think there is a huge need. Regardless, I believe that if he would connect with other survivors he could gain the ability to relate to someone who would understand the experience. It may allow him to open up and talk about it.

    So any suggestions on how to get him seek out a survivor site, maybe even this one?

    Congratulation on your continued remission.

    momwithquestions

  • savanna
    savanna Member Posts: 2
    Learning Day to Day

    Hi All

    My Mum was diagnosed 3 weeks ago and went straight into intensive Chemo.  She has neutropenia so is in a solitary room.  She has finished her week of chemo and now we wait out the 3 weeks following which I believe are the most difficult?

     

    She has had ulcers in her mouth, a really bad throat, pains in her chest and now suspected gall bladder problems.  Through all of this I feel we fumble along as we are not sure what each of these complications means and the medical staff do not give you a basic understanding...  maybe this is all normal, but we may be experiencing fear and apprehension needlessly.

     

    My Mum is 71 and does not have the option of a bone marrow transplant.  Initially she was given 3-6 months to live but offered chemo should she wish to try for remission.

     

    I guess I want someone who can just be straight up with me and anyone who has been over 70 who has met this challenge without the option of a BMT and if chemo, blood transfusions and platelets were enough to get them into remission?

     

    Each day we continue blindly...

     

    Thank you.

     

  • savanna
    savanna Member Posts: 2
    Learning Day to Day

    Hi All

    My Mum was diagnosed 3 weeks ago and went straight into intensive Chemo.  She has neutropenia so is in a solitary room.  She has finished her week of chemo and now we wait out the 3 weeks following which I believe are the most difficult?

     

    She has had ulcers in her mouth, a really bad throat, pains in her chest and now suspected gall bladder problems.  Through all of this I feel we fumble along as we are not sure what each of these complications means and the medical staff do not give you a basic understanding...  maybe this is all normal, but we may be experiencing fear and apprehension needlessly.

     

    My Mum is 71 and does not have the option of a bone marrow transplant.  Initially she was given 3-6 months to live but offered chemo should she wish to try for remission.

     

    I guess I want someone who can just be straight up with me and anyone who has been over 70 who has met this challenge without the option of a BMT and if chemo, blood transfusions and platelets were enough to get them into remission?

     

    Each day we continue blindly...

     

    Thank you.

     

  • mdking
    mdking Member Posts: 2
    savanna said:

    Learning Day to Day

    Hi All

    My Mum was diagnosed 3 weeks ago and went straight into intensive Chemo.  She has neutropenia so is in a solitary room.  She has finished her week of chemo and now we wait out the 3 weeks following which I believe are the most difficult?

     

    She has had ulcers in her mouth, a really bad throat, pains in her chest and now suspected gall bladder problems.  Through all of this I feel we fumble along as we are not sure what each of these complications means and the medical staff do not give you a basic understanding...  maybe this is all normal, but we may be experiencing fear and apprehension needlessly.

     

    My Mum is 71 and does not have the option of a bone marrow transplant.  Initially she was given 3-6 months to live but offered chemo should she wish to try for remission.

     

    I guess I want someone who can just be straight up with me and anyone who has been over 70 who has met this challenge without the option of a BMT and if chemo, blood transfusions and platelets were enough to get them into remission?

     

    Each day we continue blindly...

     

    Thank you.

     

    My pop

    I am with you savanna my father was just diagnosed 1 month ago with AML he was admitted to the hospital ASAP and they started doing an aggressive chemo right away.  He is 70 so a BMT is not an option.  He is receiving treatment at penn medicine in philadelphia.  no blasts in the first bone marrow test After the treatment He does have pneumonia and heart racing.  I am unsure if all of this is normal.  he is very weak . i am scared and the nurses are kind but not full of information