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Thread: APML (a.k.a APL) info

  1. #1

    APML (a.k.a APL) info

    Hi there,

    I am a New Zealander diagnosed with APML (a.k.a APL) leukemia in Jan this year. I have been through 4 rounds of chemo and am in full remission (YAH!). I am about to start on maintenance chemo which I am told will be for about 18-24 months of taking drugs.
    As APML is fairly rare I have not spoken with any-one with it and would like to, all the leukemia patients I have met have had AML which appears to have a different treatment protocol. I especially would like to know about the long term affects.

    Thanks

  2. #2
    Hi kiwi24. I am very sorry that you have this rare for of Leukemia. I am not sure we currently have anyone with that specific type of Leukemia. My father died due to complications of ALL so at least to a degree I know what you must be going through. We have many members who are familiar with AML, CLL, CML.... the whole alphabet of Leukemias. Now we can add APL to the list.

    You are in my thoughts and prayers.
    Jim
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  3. #3

    APL

    My husband died of APL at age 38. He went through one round of chemo and chrashed 3 days into his next round. He was in remission when he died. There are alternatives to chemo. There is quite a bit of info on the Leukemia site:
    http://www.leukemia-lymphoma.org/all_page?item_id=8459

    If I can help any, let me know.
    Cindy Minich
    [email protected]

  4. #4
    Thanks for your kind words and the internet link. I will continue my research and contact you if i need info.

  5. #5
    Hi Kiwi,

    I had APL too and had a bunch of questions.

    In summary: if you make it past induction and consolidation, you can relax. Maintenence is really not that bad (depending on what ATRA does to you). Maintenence is basically to reduce your odds of relapse. Odds of relapse are hard to calculate because they are so low.

    As far as long term side effects: low WDC, low platelet count, low sperm count. None of them are really a big deal.

    Out of curiosity, are you taking Vesanoid or the generic ATRA? How much does it cost there?

  6. #6
    Thanks for the info, it is always in the back of your mind wondering if it will return. As much as I try to get on with my life, it nags away at you.

    I get Vesanoid ATRA, and we are lucky here in NZ we don't have to pay for cancer treatment through our public health system (except in our taxes of course), so my treatment has been free. I would hate to think how much it actually costs.

    Thanks for your reply and keep in touch.

    KiwiChick

  7. #7
    i have just finished the atra phase....i was wondering if anyone else had awful headaches like me. i am still having these headaches even though the treatment is done. the doctors had been giving me tylenol with codeine and oxycodone to treat the pain but my parents (not the doctors) are cutting me off from the pain meds. anyone have a good strategy to get off pain meds???

  8. #8
    Quote Originally Posted by danielbatesville View Post
    i have just finished the atra phase....i was wondering if anyone else had awful headaches like me. i am still having these headaches even though the treatment is done. the doctors had been giving me tylenol with codeine and oxycodone to treat the pain but my parents (not the doctors) are cutting me off from the pain meds. anyone have a good strategy to get off pain meds???

    Im new here. I am a APL survivor. My last IDO Chemo was April 2010. I am also on atra from day one of diagnosis. I get bad headache's from the atra. I also get body pain, nausea and fatigue. I am currently on 50mg 15 days every 3 months. I was told i have to be on it for 2 years from the last bone marrow that showed no cancer. As to cost. Here is the USA my atra pills where around $2500 a month when i was going through treatment. That was 10 pills a day for 30 days. A few times they actually had a hard time getting them.

  9. #9
    Newbie New User
    Join Date
    Jun 2011
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    Hello, my husband had apml leukaemia in 2007 and had 4 bouts of chemo and atra plus 2 years of maintenance. He has been in remission since 2008, but has quite a lot of headaches which worry him. Anyone else have this? He also gets faint/dizzy if stands up too quick and feels general 'fuzzy' pressure in his head. Hard to describe. Also he says he has terrible memory and inability to concentrate, maybe the treatment affects a part of the brain? The maintenance headaches are def due to the atra/other medication as my husband had same thing...

  10. #10
    Newbie New User
    Join Date
    Jun 2011
    Posts
    2
    I meant to say, on a positive note, apart a few period with headaches, he is extremely well and has just completed his first triathlon! If kiwi24 wants to speak directly to him I am sure he would be delighted to, as it's not often you meet other people who had it. If u send personal message I can put you in touch, all the best and well done for getting through the worst!

 

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