AML Leukemia

24

Comments

  • byornham
    byornham Member Posts: 4
    #22
    cheryl58 said:

    I'm a 7 year survivor of AML. I'm interesting in knowing others who survived and what the future holds for us.

    My husband is a survivor as well
    He was diagnosed is Aug. of 05. It is a big mystery because as near as I can tell most journeys are not the same. I would like to hear more from long term survivors it would encourage us to know more people do live a longer life with this disease.
  • mtbikernate
    mtbikernate Member Posts: 31
    #23
    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

    I was diagnosed with AML M2
    I was diagnosed with AML M2 with an 8:21 translocation in March 2009 and was declared in remission in April 2009. I've been in remission for a full year now.

    I got 9mos of full chemo on the FLAG protocol (fludarabine, cytarabine, and mylotarg). I got all but my last treatment as an inpatient and had VERY minimal side-effects during that time. I lost some of my hair, but that was mostly it. I did not have any nausea until my last full treatment as an outpatient. I attribute that to two things. First, fluids. As an inpatient, I had an IV drip 24hrs/day. As an outpatient, I couldn't drink enough. Also, as an inpatient, I received IV Zofran (antinausea drug). I did not receive that as an outpatient.

    I did get an infection (sepsis of a staph bacterium when I was in the hospital getting a transfusion...my temp hit 108 and I was hospitalized for 10 days, but received IV antibiotics daily for 3 weeks), but we're fairly sure I actually got it in the hospital because a nurse didn't scrub my central line port well enough with alcohol. My wife and I were EXTREMELY careful and she keeps the house as clean as a hospital (she's a veterinarian, so is well aware of proper cleanliness standards), which has kept me from having other problems.

    I did have some trouble with 'rhoids at one point, but they cleared up with some OTC treatments the nurses at the hospital recommended to me.

    My only other trouble was a spot under one of my toenails. Right now, I'm not entirely sure what it was. The doctor doing rounds the day I was getting my chemo said it looked like an infection and told me to see a podiatrist. I did that, and the idiot thought I was ingrown and needed to be cut that day (even though my counts were rather low at the moment). I wouldn't let him do that, so he suggested I do soaks in warm, soapy water. That cleared up the "infection" but there was still a spot of blood under the nail that would periodically ooze for awhile. 6 months later, it's no longer oozing, and it looks like it's healing. I have no idea what the spot is, but I'm glad it's getting better so I can wear sandals again.

    Now, I'm off the study protocol and my oncologist wants to treat me on a sporadic basis for the next year, pointing out that the longer AML patients get treatment, the longer they are likely to be long-term survivors. The stuff he's giving me now (Phiveracycline? I have no idea how to spell the stuff, but that's what it sounds like when he says it) made me quite sick the last time I got it. He gave me an oral Zofran prescription this time around. I just got my first dose of three today, so we'll see how well it works.
  • clairmccormack
    clairmccormack Member Posts: 9
    #24
    sonja844 said:

    Hi Rita.. I found out I had AML 12/21/08
    I have had no one to talk to either who knows what I'm going through. I'm sure you are scared. I know how I felt when I was told and if you feel like I felt, you are shocked. Shake the shock off and get ready to fight. Girl you are IMPORTANT and LOVED and you need to hear that. So get that fighters spirit in check because you are needed here on earth. I had to fight for my life and when I was unable to fight any longer...loved ones fought for me. I AM praying for you. God is with you, and believe it or not he is will you. He has walked with you through all your life silently, but is the one who is with us when are hospital room is empty and we need someone to cry to. Don't forget to call out to him. I don't want to be preaching to you or anyone, but I'm here on earth this day because of Jesus. If I offend you I apologize but I'm not sorry for believeing in him.
    GOD IS WITH YOU DEAR!

    hi sonja, my mom was
    hi sonja, my mom was diagnosed with AML leukemia in April. She is still in the hospital and had a VRE bacteria from her port and then now has pneumonia and a blood clot in her arm. We are waiting for her white counts and neutrophil count to rise. How long did it take you for your counts to go up after chemo? How old are you as well? I'm just curious and trying to find someone who has a similar situation for some comfort. thanks
  • choirgirl120
    choirgirl120 Member Posts: 1
    #25
    byornham said:

    My husband is a survivor as well
    He was diagnosed is Aug. of 05. It is a big mystery because as near as I can tell most journeys are not the same. I would like to hear more from long term survivors it would encourage us to know more people do live a longer life with this disease.

    I am a long term survivor
    My name is Cindie. I am 31 years old. I was diagnosed with AML on June 14, 1988 when I was 9 years old. I received a bonemarrow transplant from my brother who was 17 at the time. I developed graft vs. host disease and still have difficulties to this day.

    I had four rounds of chemo and then a full week of full body radiation (three times a day). I have had health issuses that have been assumed to be related to the radiation and chemo: like appendectomy, gall bladder removed, frequant kidney infections and type II DM(with no family history). My doctor today associates it with my body being "zapped" and pretty much killing off all the small body parts. I have a echocardiogram done anually and try to do things to keep my immune system up.

    I do have three MIRACLE babies, 10, 5 and 3. I was told at the age of 9 I would never have children due to sterilization, so I prepared my self and then my husband (later) that I would adopt. That would be ok with me. But I am glad they were wrong:)

    I am now an OB nurse, love to read and spend time with my family. AML was part of my life, NOT my life. I look forward to many more years ahead!!

    I Love discussing my medical history and would try and answer any questions you might have. Or just need to talk. My Email is Choirgirl120@hotmail.com
  • Linda Cooper
    Linda Cooper Member Posts: 1
    #26
    Heather McClanahan
    July 24,2010,My daughter, Heather, is 39 and has had AML since Jan of 09. She had her transplant in June of09. She stayed in remission for 80 days. Then we had to go home. She was at Vandie Hospital in Nashville, Tenn. We live in Townsend, Tenn. So this was a long and sad trip home. Since then she has been taking Vidasha,chemo. We came back to Vandi, July 18. They had to take her port out because of an infection in it. She is still running some fever though. She is thinking about taking the chemo, flag. She wants to get back in remission to have another transplant. We pray all the time that God will see fit to heal her here I know she will be healed if he takes her to Heaven. Her 2 boys need,and her family and friends do too. Please pray for her. Her Mom and Caregiver MY e-mail is grankayc@att.net
  • Keri Black
    Keri Black Member Posts: 4
    #27
    sonja844 said:

    I am new here, but I need to talk to other AML survivors
    My name is Sonja. I'm 34 with 4 kids and have been married for just about 15 years. Last year (12/21/08) I was diagoised with AML. I was pregnant and had to give up the pregnancy, (which I still cry about) to start chemo. I started chemo January the 1, 2009. I have been in remission since the first chemo, but had more. I'm very emotional still and wonder if that will ever go away? I really need people who know what I have gone through to help me heal. I have chronic pain and can't work now, but I'm seriously so greatful I'm here today. I know there is only one who made me well! The Lord Jesus Christ.
    Even though he has healed me of the cancer, I still am emotionally in pain.
    If anyone knows how I can get healing help for the pain I am left with...please e-mail me at sonjamarie844@aol.com.
    It may take me awhile to get back to you. Please be patient. I appreciate it...Thank you!

    Hey Sonja,
    Have you tried
    Hey Sonja,
    Have you tried lyrica? My brother has alot of chronic pain as well and the lyrica didn't take all the pain away but did take the edge off. It worth a try...hope it works for you!
  • Crystollina
    Crystollina Member Posts: 1
    #28
    choirgirl120 said:

    I am a long term survivor
    My name is Cindie. I am 31 years old. I was diagnosed with AML on June 14, 1988 when I was 9 years old. I received a bonemarrow transplant from my brother who was 17 at the time. I developed graft vs. host disease and still have difficulties to this day.

    I had four rounds of chemo and then a full week of full body radiation (three times a day). I have had health issuses that have been assumed to be related to the radiation and chemo: like appendectomy, gall bladder removed, frequant kidney infections and type II DM(with no family history). My doctor today associates it with my body being "zapped" and pretty much killing off all the small body parts. I have a echocardiogram done anually and try to do things to keep my immune system up.

    I do have three MIRACLE babies, 10, 5 and 3. I was told at the age of 9 I would never have children due to sterilization, so I prepared my self and then my husband (later) that I would adopt. That would be ok with me. But I am glad they were wrong:)

    I am now an OB nurse, love to read and spend time with my family. AML was part of my life, NOT my life. I look forward to many more years ahead!!

    I Love discussing my medical history and would try and answer any questions you might have. Or just need to talk. My Email is Choirgirl120@hotmail.com

    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(
  • sheena141
    sheena141 Member Posts: 3
    #29
    cheryl58 said:

    I'm a 7 year survivor of AML. I'm interesting in knowing others who survived and what the future holds for us.

    WOW!!! A 7 year survivor....I can't wait to be able to say that!!! I believe that after 5 years you are "cured". I am only at 7 months and love to hear success stories.

    Did you have a stem cell transplant? How old were you when you were diagnosed?
  • Lolly29
    Lolly29 Member Posts: 1
    #30
    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.
  • Cancerfather
    Cancerfather Member Posts: 4
    #31
    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.

    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
  • Cancerfather
    Cancerfather Member Posts: 4
    #32
    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.

    first induction failure
    My daughter just was told her first induction failed. How is your brother doing. I am totally down
  • ive3devils
    ive3devils Member Posts: 3
    #33
    cbertus said:

    Hi Rita,
    I just got started on this web cite. My husband was diagnosed with AML M2 in 7/01 and has been in remission since 11/01. His blood counts have never come back up to normal. He has not had a transfusion since 8/02. He now has myelodysplasia. How are you doing?

    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
  • ive3devils
    ive3devils Member Posts: 3
    #34
    cbertus said:

    Hi Rita,
    I just got started on this web cite. My husband was diagnosed with AML M2 in 7/01 and has been in remission since 11/01. His blood counts have never come back up to normal. He has not had a transfusion since 8/02. He now has myelodysplasia. How are you doing?

    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
  • ive3devils
    ive3devils Member Posts: 3
    #35
    ive3devils said:

    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

    AML after bone marrow transplant
    So my daughters transplant did not work they say her leukemia is progressing and decided to do an outpatient chemo (only inpatient). The first 2 rounds of chemo (aggressive) her chromosomes rejected so why would they give her a lower dose chemo. They said they were trying what they could to give her quality of life. What does that mean? HELP!!!! I am confused and don't understand. They also stated they would not do a 2nd bone marrow. Now she is in for a cat scan for labored breathing?
  • TanyaC97
    TanyaC97 Member Posts: 20
    #36
    ive3devils said:

    AML after bone marrow transplant
    So my daughters transplant did not work they say her leukemia is progressing and decided to do an outpatient chemo (only inpatient). The first 2 rounds of chemo (aggressive) her chromosomes rejected so why would they give her a lower dose chemo. They said they were trying what they could to give her quality of life. What does that mean? HELP!!!! I am confused and don't understand. They also stated they would not do a 2nd bone marrow. Now she is in for a cat scan for labored breathing?

    Not sure where you are
    Not sure where you are located, but I would recommend getting a second opinion. Dana Farber is top, I am sure there are other places. My prognosis is good, but I still got a second opinion.
  • merritt2011
    merritt2011 Member Posts: 2
    #37
    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

    My Son has AML in Hospital Now
    My son was dignosed with AML on sept 2 he spent 28 days in the hospital. He has just had his 1st of 4 chem treatments. He is also back in the hosptial with fever. He has also got these really bad bumps on his face that are infected. Just don't know what to do for him. When he feels good he wants to do things. Really hard for me to try to keep him down.
  • naome1104
    naome1104 Member Posts: 1
    #38
    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
  • marcdeman
    marcdeman Member Posts: 1
    #39
    Books said:

    Hello Chery158
    My son is a AML survivor of 4 years now. He is however, suffering from Avasculian necrosis in the worse form. He is in constant pain and is so angry that his personal life is suffering badly from it. He is in college and trying to function. He feels that he is leading a double life and is going crazy doing it. Can you offer any suggestions or words of wisdom for my son. He was so happy before and now is so angry and sad.
    Thanks,
    Books

    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.
  • xuelan
    xuelan Member Posts: 23
    #40
    Cancerfather said:

    first induction failure
    My daughter just was told her first induction failed. How is your brother doing. I am totally down

    Failure
    My first induction failed and I had to be reinduced. That was successful. Now it has been 10 months since my bone marrow transplant and I am getting better every day. Your daughter must be positive about things. That is how I got through all of this.
  • xuelan
    xuelan Member Posts: 23
    #41
    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.

    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.

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