AML Leukemia

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  • 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

     

     

  • moving_on
    moving_on 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

    When chemo fails

    Hi,

    I think your father must find something to believe in, something which will make him want to go on, a strong reason to live, something in the future (could be an event he wants to attend, children, grandchildren to live for).

    I have acute myeloid leukemia, I was diagnosed October 2012, when I was 68 years old and I had had the disease for helf a year prior, at least. I was not a candidate for extreme chemo...my age, my cytogenetics, poor chances during treatment, and likely return of the disease within a short while. I was given a 'lesser' chemo out patient treatment which helped for a while but is no longer useful. The hematologists give me no encouragement in regard to this disease, forget their predictions. 

    I am putting my hope in my attitude and the changes I have made in my day to day life since diagnosis. I have 'pulled out all the stops'!

    I eat healthy foods, lots of greens, brown rice...kind of a macrobiotic diet with just a bit of fish. I read positive books by Dr. Bernie Siegel and others, do positive affirmations on a tape by Louise Hay which a friend loaned me, have also learned auto hypnotism from an MD who specializes in that. I believe all this has kept me feeling well, not a sick day yet. Exercice is important to me...walk at least 1/2 hour a day and get 2 hours of fresh air, sleep with heat off windows open, started into meditation several weeks ago with Oprah and Deepak Chopra free 21 day meditation challenge. You can find info on any of this online.

    My last bone marrow extraction showed cancer worse but I feel better all the time! I could only walk up 4 steps when diagnosed, now up 16 without shortness of breath. I have put my faith in my mind as the best fighter of this disease. I wil enjoy every day as long as I can. I feel peaceful regardless of the outcome.

    Only your father can do it but hopefully he will be open to suggestions from you which may motivate him to live.

    All the very best to you

     

  • ckwaml
    ckwaml Member Posts: 4

    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.

     

    being sick

    The low blood counts after chemo are what I blame for all the complications I have gotten during the last 4 months of AMl chemo.  Luckily I do not work outside the home so have avoided contact with the public, even grandkids, etc.  I am hoping that this isolation is worth it as I just have 2 months of consolidation to go and then I think I am done as I am still in remission.  I live about 150 miles from the hospital and so stay there during low blood count and just return home during the "rise"

  • ckwaml
    ckwaml Member Posts: 4
    Musette said:

    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.

    night sweats and joint pain

    Those are some of the same questions I have.  I am definately way past menopause.  I believe the big night sweats are my body working hard creating blood cells and fighting the chemo.   I am AML and on the 3rd consolidation, full remession so far.  The joint pains, now especially the right hip are there, too.  I am going to ask my Onc. dr. about that today.  I dont want to come out  of this and have to have a hip replacement.  Could it just be lack of muscle to hold the hip joint in place?   I would swim laps 45 minutes 3 to 5 times a week before this diagnosis and hike often.  I live out in Moab, Ut and we did alot of activities.  I'm not sure how much exercise I should try during this.  I know I have little stamina and am concerned for organ damage if I tax my body too much with exercise.  What do you think?

  • ckwaml
    ckwaml Member Posts: 4
    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.

     

    Going thru this at 66

    I was diagnosed with AML Jan 2013.  I am going thru what your mum is and have suffered tru most of what you mentioned.  Most of the things are just routine and expected with the chemo.  I have had no counts, low counts, neutropenia, high fever, even sudden allergy (to shell fish)  resulting in antaflatic shock and barely made it.  The support staff (drs and nurses) are use to this and sometimes don't realize how scarry it is for us patients and their caregivers (you,  my husband etc.)  I don't know how many times I thought "this is IT".  I am now on my third consolidation chemo.  I seem to get weaker each time, but now am confident I'm going to make it.  Some of these symptoms or side effects really blow me away though.   Write back on this collum.

  • ckwaml
    ckwaml Member Posts: 4
    mdking said:

    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

     

     

    Nurses

    I am 66 and have had chemo for AML since Jan 1,2013.  The nurses help with all cancer patients, and even caancer patients with the same diagnosis don't always react the same way to the chemo, isolation, complications, etc.  The only source for info should be your oncologist.  I have had some complicaations, too.  One,as you may notice is hand and body tremors (it's not just poor typing ability). The thing I have learned most, an especiallly when my daughter of 8 had ALL and died when she was just 12 years old 25 years ago was the meaning of "one day at a time".  Anticipation of things to come (wwhat if I get pnemonia, strep, etc) leads to nothing but dread....a lot of wasted energy.  Also, dwelling on the mysrable day in the hospital is just negative energy.  I try to avoid both and live one minute, hour, or day at a time.   Can't always get it but I try.  My husband, who is my caregiver, can usually help me out with a smile, and I try to do the same for him.   Lots of luck to you. 

  • lsundbom
    lsundbom Member Posts: 6
    moving_on said:

    When chemo fails

    Hi,

    I think your father must find something to believe in, something which will make him want to go on, a strong reason to live, something in the future (could be an event he wants to attend, children, grandchildren to live for).

    I have acute myeloid leukemia, I was diagnosed October 2012, when I was 68 years old and I had had the disease for helf a year prior, at least. I was not a candidate for extreme chemo...my age, my cytogenetics, poor chances during treatment, and likely return of the disease within a short while. I was given a 'lesser' chemo out patient treatment which helped for a while but is no longer useful. The hematologists give me no encouragement in regard to this disease, forget their predictions. 

    I am putting my hope in my attitude and the changes I have made in my day to day life since diagnosis. I have 'pulled out all the stops'!

    I eat healthy foods, lots of greens, brown rice...kind of a macrobiotic diet with just a bit of fish. I read positive books by Dr. Bernie Siegel and others, do positive affirmations on a tape by Louise Hay which a friend loaned me, have also learned auto hypnotism from an MD who specializes in that. I believe all this has kept me feeling well, not a sick day yet. Exercice is important to me...walk at least 1/2 hour a day and get 2 hours of fresh air, sleep with heat off windows open, started into meditation several weeks ago with Oprah and Deepak Chopra free 21 day meditation challenge. You can find info on any of this online.

    My last bone marrow extraction showed cancer worse but I feel better all the time! I could only walk up 4 steps when diagnosed, now up 16 without shortness of breath. I have put my faith in my mind as the best fighter of this disease. I wil enjoy every day as long as I can. I feel peaceful regardless of the outcome.

    Only your father can do it but hopefully he will be open to suggestions from you which may motivate him to live.

    All the very best to you

     

    killer cells

    Has your doctor talked to you about clinical trials with killer cells?  The University of MN has a trial on these that are showing good results.

     

  • Told me the same thing
    I am a APL survior. I had a bone marrow transplant from an unknown donor when I was 17yrs old may 31st 2002... One of my many hematology/oncology doctors told me that they fried my ovaries so he doubts I can have any children of my own... Was horrible... I just wanted to cry... I had full body radiation and chemo... I'm not married but engaged and its hard for me to talk about it with my fiance because its to hurtful to talk about... I'm not sure if I can and my doctors aren't either... I guess I just have to pray and wait it out... I'm 25 yrs old now... I just pray that the lord gives me Miracle babies as he did for you! :'o(

    Same situation

    Hi.

    im sharing the same story and situation.

    i was diagnosed with M3 APL on my 15th birthday. I now am 31 and am facing the two panels of judgements, on fertility. i see your message is from 3years ago. What happened since then? i am concerned since me and my partner really want to have a baby. Thanks

  • AML_Survivor
    AML_Survivor Member Posts: 2
    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.

    I was diagnosed with AML in

    I was diagnosed with AML in February 2012, I was told three different times I wouldnt make it. After five rounds of induction chemo and two stem cell transplants I've been in remission for fifteen months. I always thank God, the medical staff and all my supporters.  And my will to live.

  • uschi
    uschi Member Posts: 2

    I was diagnosed with AML in

    I was diagnosed with AML in February 2012, I was told three different times I wouldnt make it. After five rounds of induction chemo and two stem cell transplants I've been in remission for fifteen months. I always thank God, the medical staff and all my supporters.  And my will to live.

    AML-M7

    Anyone out there an AML M-7 survivior? Looking for a connection with someone with same diagnosis....Thanks! Healing thoughts to all of us!

  • Oktober375
    Oktober375 Member Posts: 1
    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

    AML M3

    Hi Rita,  I had AML and am now in remission since2013. Everyday can be challenging but please know you do have a support network here. I have an adult child and that's all to my family but I have met some really great friends online and learned a lot from communities such as this one. Let me know if you need an ear or a shoulder :)  and hugs to you. This too,  will pass. 

  • Outerbanks
    Outerbanks Member Posts: 1

    AML after bone marrow transplant
    Hi my daughter was diagnosed with AML she is 24. she had 2 aggressive chemo rounds and the cancer was still in her blood and bone. They did a bone marrow translant and it was just about the 100th day since the transplant and they told her it was back in her blood and bone. They took her off immune meds and are going to "see" if she can fight it if not they will do chemo (outpatient) again. Well she spent 4 months in hospital and her chromosomes were resistent to chemo (im no dr. but that is not good) Can she have another transplant. She is tired and said "it is what it is" they told me less than 50 percent chance of survival. Well I being her mom am not buying it. I say go to Dana Farber with situation for a second opinion. Does anyone know the odds or if second transplant is an option ? Thank you

    Anything possible
     

    Anything possible

     

  • Osunny
    Osunny Member Posts: 6

    Told me the same thing
    I am a APL survior. I had a bone marrow transplant from an unknown donor when I was 17yrs old may 31st 2002... One of my many hematology/oncology doctors told me that they fried my ovaries so he doubts I can have any children of my own... Was horrible... I just wanted to cry... I had full body radiation and chemo... I'm not married but engaged and its hard for me to talk about it with my fiance because its to hurtful to talk about... I'm not sure if I can and my doctors aren't either... I guess I just have to pray and wait it out... I'm 25 yrs old now... I just pray that the lord gives me Miracle babies as he did for you! :'o(

    The same problem

    Hi Crystollina, are there any news about you? Were you able to become pregnant? I have the same problem. And at the same time there is another problem - the fear of a relapse during the pregnancy. I can't imagine my life without children. I feel completely healthy and it is very difficult to know that possibly I will never become a mother.

  • JennKirk38
    JennKirk38 Member Posts: 1
    edited October 2021 #75
    Loved one with aml just need someone thats like me to talk to

    My boyfriend has aml and was diagnosed in 08 and still fighting it. This is a new relationship for me and its hard for me to watch him go through so much pain. I feel helpless. Its hard for me to watch him take so much pain Medicine to stay comfortable but Im worried about him. I would love some advice as to what I can do to help him.