Acute Promyelocytic Leukemia

kpiper
kpiper Member Posts: 1
edited March 2014 in Leukemia #1
Newly diagnosed. Looking for others to share there experiences.
«1

Comments

  • mc2001
    mc2001 Member Posts: 343
    #2
    Hi There,
    Sorry to hear about your diagnosis. My name is Michael, and I am a leukemia survivor of ALL Pre-B cell. This is a great place to meet caring people who enjoy helping one another. The chat room is pretty good place for that. My email address is :
    leu_lym@yahoo.com
    and my leukemia and lymphoma website is:
    www.geocities.com/leukemia_lymphoma
    Take care, and God bless.
    -Michael
  • renteria_54845
    renteria_54845 Member Posts: 1
    #3
    mc2001 said:

    Hi There,
    Sorry to hear about your diagnosis. My name is Michael, and I am a leukemia survivor of ALL Pre-B cell. This is a great place to meet caring people who enjoy helping one another. The chat room is pretty good place for that. My email address is :
    leu_lym@yahoo.com
    and my leukemia and lymphoma website is:
    www.geocities.com/leukemia_lymphoma
    Take care, and God bless.
    -Michael

    how old were you when you had leukemia/
  • CarpeDMgirl
    CarpeDMgirl Member Posts: 1
    #4
    Hello, K.
    My husband was diagnosed with AMLm3 in August 2002. Just wanted to say hello and wish you well.
    God Bless,
    D.
  • djoury
    djoury Member Posts: 1
    #5
    Hello,
    My name is David. I was diagnosed with APML in November 2001. Thank God I am in total remmission now. I found the first month in hospital to be the most difficult. Chemo was hard, however, things got better and better as my blood count returned. After the initial chemo dose (one month in Hospital) I went through two sessions of Arsenc (one and a half months as an outpatient). Hang in there, have faith and god willing you will beat it. PS. I placed my ski boots in my hospital room as a reminder of the good times. That helped a lot.
    Take care and best regards.
    David
    You can email me at djoury@xenel.com
  • April123
    April123 Member Posts: 3
    #6
    Hi,
    My father battled a six months with acute lymphosic leukemia but i do know of your type of leukemia although he did'nt survive leukemia i know if you have enough strength,courage, and hope you will get through this tough trial you are facing.If you ever just want to talk my email address is www.goonts@aol.com.I will prayer and keep you in my thoughts always.
    April
  • csr1
    csr1 Member Posts: 1
    #7
    renteria_54845 said:

    how old were you when you had leukemia/

    Dear mia_54845, My name is michael and i was 38 when i was told i had acute promyelocytic leukemia. I am now 44 and in oct of last year i had my 5 year post transplant and still goin strong. I have just signed on to this web sight so if you would like to chat e-mail me here at csr1 or on my other e-mail site mjsoto1959@sbcglobal.net hope to hear from you sonn, take care michael.
  • moondancer830
    moondancer830 Member Posts: 10
    #8
    Hello! I am a survivor of ANLL and I just wanted you to know that survival is possible-

    I'm 17 and my ANLL was prompted by experimental chemo used to treat a tumor under my arm when I was three. In dec 95 I recieved a bone marrow transplant to treat my ANLL. 8 years and I am cancer free!!!!!!

    make sure you have a support circle and a good sence of humor- laughter is everything!

    If you'd like to talk more, have ANY questions, would like to vent, whatever... feel free to contact me! I just discovered this place and if I would have had this when I was sick it would have helped so much. Let your friends and family know about this place too.

    I wish you the best of luck- you are in my prayers.

    ONE DAY AT A TIME.
  • jskaluba
    jskaluba Member Posts: 1
    #9
    moondancer830 said:

    Hello! I am a survivor of ANLL and I just wanted you to know that survival is possible-

    I'm 17 and my ANLL was prompted by experimental chemo used to treat a tumor under my arm when I was three. In dec 95 I recieved a bone marrow transplant to treat my ANLL. 8 years and I am cancer free!!!!!!

    make sure you have a support circle and a good sence of humor- laughter is everything!

    If you'd like to talk more, have ANY questions, would like to vent, whatever... feel free to contact me! I just discovered this place and if I would have had this when I was sick it would have helped so much. Let your friends and family know about this place too.

    I wish you the best of luck- you are in my prayers.

    ONE DAY AT A TIME.

    Hi, I am 18 months since diagnosis of apl. I have been in complete remission about 10 months. Right now I take no medication & my PCR test is completely negative. Hopefully I will never need stem cells or BMT. Hope you are well.
  • Elaine505
    Elaine505 Member Posts: 1
    #10
    Hi: My husband just received his diagnosis two days ago. We'll see the hematologist/oncologist in two days. I'm just really scared right now. He's getting so weak and his gums are bleeding a lot. This came on so fast. Just 10 days ago he was pretty much strong and healthy. The speed of this thing was incredible. Sorry, I guess I just needed to vent someplace. What has been your expirience been? Thanks for listening.
  • Davie
    Davie Member Posts: 1
    #11
    Elaine505 said:

    Hi: My husband just received his diagnosis two days ago. We'll see the hematologist/oncologist in two days. I'm just really scared right now. He's getting so weak and his gums are bleeding a lot. This came on so fast. Just 10 days ago he was pretty much strong and healthy. The speed of this thing was incredible. Sorry, I guess I just needed to vent someplace. What has been your expirience been? Thanks for listening.

    Hi My name is Dave and I am a survivor of Lukemia I was diagnosed last Feb. and am now in remision. tell your husband it will be hard but to keep a stiff upper lip. Attitude is a key part of the recovery prosess. He will be in for a very rough fight but it is a winable fight. My wife went through hell for about 4 months. I am now about as healthy as I was before I contracted Leukemia.I hope you and your husband have as good an outcome as I had. God bless and if I can help in any way contact me at dave_f_83672@msn.com
  • pking72472
    pking72472 Member Posts: 2
    #12
    Elaine505 said:

    Hi: My husband just received his diagnosis two days ago. We'll see the hematologist/oncologist in two days. I'm just really scared right now. He's getting so weak and his gums are bleeding a lot. This came on so fast. Just 10 days ago he was pretty much strong and healthy. The speed of this thing was incredible. Sorry, I guess I just needed to vent someplace. What has been your expirience been? Thanks for listening.

    hello, i am a 38 yr old married man with a wonderful wife and two great children. i am in remission now for two years. i take 1 aspirin a day and live a normal and happy life after all the treatment. i also have never really been sick until i was hit with apl. he can make it through this make sure he keeps up his nutrition during his treatment.(my wife put insure in my favorite banana milk shake and made me drink it even if i was sick.) he can make it through this.you can email me @ pking72472@yahoo.com if you need any info or just want to talk. god bless
  • pking72472
    pking72472 Member Posts: 2
    #13
    contact me at pking72472@yahoo.com i can talk to you and help you through this. you can make it through this and live a normal life.
  • dufferdom
    dufferdom Member Posts: 1
    #14
    Hi, I am a seven year survivor of APL. Take one day at a time and keep a positive attitude. I can be reached at dufferdom@netzero.com if you want to chat.
  • aml
    aml Member Posts: 1
    #15
    dufferdom said:

    Hi, I am a seven year survivor of APL. Take one day at a time and keep a positive attitude. I can be reached at dufferdom@netzero.com if you want to chat.

    hello, my name is angie. i was diagnosed with aml 2002. was on remission then relapsed last year. my doctors found out that i had apl last year. i'm on remmission now and taking vesanoid. i've talked about this with my family and friends, but never with other survivors. i've always tell them i'm ok, but to be honest i am scared. for what? i really don't know, maybe for the "what if...". my 4 year old really helps me a lot when i get scared.
  • niavas
    niavas Member Posts: 6
    #16
    I was diagnosed may 7 2003 with APL, spent 4 months in the hospital and 3 months of outpatient chemo, I was looking up some information and found that alot of times with AML people recieve a spinal tap to see if the cancer had spread is that true for most of you? And for those of you still fighting AML ask your oncologist about ATRA Its so much better than a BM transplant. E-mail me at Red_headed_hysteria@hotmail.com
  • ritamack
    ritamack Member Posts: 2
    #17
    pking72472 said:

    hello, i am a 38 yr old married man with a wonderful wife and two great children. i am in remission now for two years. i take 1 aspirin a day and live a normal and happy life after all the treatment. i also have never really been sick until i was hit with apl. he can make it through this make sure he keeps up his nutrition during his treatment.(my wife put insure in my favorite banana milk shake and made me drink it even if i was sick.) he can make it through this.you can email me @ pking72472@yahoo.com if you need any info or just want to talk. god bless

    HELLO, MY HUSBAND IS DX WITH APL . HE SUFFERED A STROKE DUE TO THE APL. HE IS IN END PHASE OF INDUCTION WITH ATRA, DONNA/CYTARABINE. HE IS IN DAY 20. HE WILL HAVE BONE MARROW BX ON DAY 30. HE HAS PROBLEMS FROM THE STROKE, LET ALONE APL. UR DAUGHTERS ARE YOUUNG TEENS , 3 OF THEM . CAN U LET ME KNOW WHAT THE FIRST YEAR IS LIKE
    WE HAVE A 2X WHAMMIE WITH THE APL AND THE STROKE.
    HOPE TO HEAR FROM U.
  • ritamack
    ritamack Member Posts: 2
    #18
    Elaine505 said:

    Hi: My husband just received his diagnosis two days ago. We'll see the hematologist/oncologist in two days. I'm just really scared right now. He's getting so weak and his gums are bleeding a lot. This came on so fast. Just 10 days ago he was pretty much strong and healthy. The speed of this thing was incredible. Sorry, I guess I just needed to vent someplace. What has been your expirience been? Thanks for listening.

    6-18-4 MY HUSBAND WAS DX WITH APL ON 5-27-4 HE IS NEAR END PHASE OF INDUCTION. HOW DID THE TREATMENT PHASES GO FOR U? HE ALSO SUFFERED STROKE BECAUSE OF THE APL PRIOR TO TX, HE HAS SOME OTHER ISSUES TO DEAL WITH DUE TO THE STROKE. HE CANNOT AT PRESENT READ OR COMPREHEND MOST OF THE WRITTEN WORD. FRUSTRATION
    BECOMES LIIKELY WHEN AN AVID READER CAN NO LONGER READ.
    PLEASE RESPOND AND INFORM ME ON WHAT TO EXPECT FOR CONSOLIDATION AND MAINTENANCE. ARE THEY IN-PT OT OUT-
    THANK YOU,
    RITA
  • blondie37
    blondie37 Member Posts: 2
    #19
    djoury said:

    Hello,
    My name is David. I was diagnosed with APML in November 2001. Thank God I am in total remmission now. I found the first month in hospital to be the most difficult. Chemo was hard, however, things got better and better as my blood count returned. After the initial chemo dose (one month in Hospital) I went through two sessions of Arsenc (one and a half months as an outpatient). Hang in there, have faith and god willing you will beat it. PS. I placed my ski boots in my hospital room as a reminder of the good times. That helped a lot.
    Take care and best regards.
    David
    You can email me at djoury@xenel.com

    My name is Dina, I was just recently diagnosed with APML in December of 03. I spent the first month in the hospital as well. I was in remission after that, but did 3 more treatments to insure that it does not come back. I am now being told by my doctor that he wants me to take a chemo pill everyday and a shot once a week for 1 1/2 years to bring down the percentage from 30% to 6% that this will not come back. I hate doing this, but was told that this is a new protocal for this leukemia.
  • blondie37
    blondie37 Member Posts: 2
    #20
    djoury said:

    Hello,
    My name is David. I was diagnosed with APML in November 2001. Thank God I am in total remmission now. I found the first month in hospital to be the most difficult. Chemo was hard, however, things got better and better as my blood count returned. After the initial chemo dose (one month in Hospital) I went through two sessions of Arsenc (one and a half months as an outpatient). Hang in there, have faith and god willing you will beat it. PS. I placed my ski boots in my hospital room as a reminder of the good times. That helped a lot.
    Take care and best regards.
    David
    You can email me at djoury@xenel.com

    My name is Dina, I was just recently diagnosed with APML in December of 03. I spent the first month in the hospital as well. I was in remission after that, but did 3 more treatments to insure that it does not come back. I am now being told by my doctor that he wants me to take a chemo pill everyday and a shot once a week for 1 1/2 years to bring down the percentage from 30% to 6% that this will not come back. I hate doing this, but was told that this is a new protocal for this leukemia.
  • Brooke1011
    Brooke1011 Member Posts: 1
    #21
    blondie37 said:

    My name is Dina, I was just recently diagnosed with APML in December of 03. I spent the first month in the hospital as well. I was in remission after that, but did 3 more treatments to insure that it does not come back. I am now being told by my doctor that he wants me to take a chemo pill everyday and a shot once a week for 1 1/2 years to bring down the percentage from 30% to 6% that this will not come back. I hate doing this, but was told that this is a new protocal for this leukemia.

    Hello everyone. My name is Brooke and my father was diagnosed in Feb. 01 with APL at 51. We live in Chicago area and have been blessed to have one of the top two Dr's in the country for this rare form of leukemia. You name it, he has done it. Multiple chemo's, arsenic, stemcell transplant with his own cells etc. He had also had multiple relapses which is can be fairly uncommon. He had been in remission again since last year until July 04 when he began to have seizures and APL was detected in his spinal fluid (this is the first time it has ever appeared here and it currently is not in his bloodstream he has had Mylotarg every few months as "maintence" treatment to try and prevent another relapse and there is not much history with its use with inactive leukemia). After two Chemo's failed to treat cells in his spinal fluid (also fairly uncommon that would happen) he began radiation last week. In two weeks we find out what kind of time we could have left with him and if the radiation is working. The good news is he feels relatively fine and is even attending work daily after treatment. Please, if anyone would like to talk, has any APL questions, wants to share experiences, don't hesitate to email me @ PreppieBlonde@aol.com. I remember how especially hard this was to deal with in the beginning and having no one to really talk to about it made it even more devastating.
    *Brooke

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