Any ALL Survivors Out There Who Have Advice?

DevonLea
DevonLea Member Posts: 22
in Leukemia #1
I was diagnosed with ALL last November. I have been in remission for a while now and am in the maintenance phase of my chemotherapy. I was taking Mercaptopurine for a few weeks when my counts started to drop. I have been off them for three weeks now and my counts are still dropping. They were stable for a week or so, then Tuesday they went up and today they went back down again. The doc thinks its only the meds but I am terrified that its the cancer coming back. Is there anyone out there that has experienced this as well? Am I just being paranoid? It just seems like three weeks is a long time. I got a bone marrow biopsy 4 weeks ago and everything was clear. Any and all advice would be appreciated.

Comments

  • nempark
    nempark Member Posts: 681
    #2
    Hi
    Hi Devon: I am so sorry I didn't get a chance to reply to your post. But as you can see, it is difficult to get answers on this site. I hope by now you are doing better and your counts are up. Sometimes, the meds can do that as a matter of fact all the time it is the meds that bring your counts down. My daughter had the diagnosis in November 2011 and she failed the induction, she is now on a different protocol and her counts when she gets chemo is horrifying. I will not go into much now unless you want to hear it sometimes it can be very scary, but the meds as crazy as it is it does work in the end. Please let me know how you are doing. If you would like you can e-mail me. Juneadrian@msn.com. Hope to hear from you soon.
  • DevonLea
    DevonLea Member Posts: 22
    #3
    nempark said:

    Hi
    Hi Devon: I am so sorry I didn't get a chance to reply to your post. But as you can see, it is difficult to get answers on this site. I hope by now you are doing better and your counts are up. Sometimes, the meds can do that as a matter of fact all the time it is the meds that bring your counts down. My daughter had the diagnosis in November 2011 and she failed the induction, she is now on a different protocol and her counts when she gets chemo is horrifying. I will not go into much now unless you want to hear it sometimes it can be very scary, but the meds as crazy as it is it does work in the end. Please let me know how you are doing. If you would like you can e-mail me. Juneadrian@msn.com. Hope to hear from you soon.

    Hi there. I sent you an
    Hi there. I sent you an email, I was wondering if you had received it yet?
  • nempark
    nempark Member Posts: 681
    #4
    DevonLea said:

    Hi there. I sent you an
    Hi there. I sent you an email, I was wondering if you had received it yet?

    No!!!
    Can you please re-send it. Thanks
  • DevonLea
    DevonLea Member Posts: 22
    #5
    nempark said:

    No!!!
    Can you please re-send it. Thanks

    Ok
    Ok, I will! =)
  • Maribthe1
    Maribthe1 Member Posts: 7
    #6
    Hi Devon, my name is mari. I
    Hi Devon, my name is mari. I was dg with all after six months of chemo I myself like you went into a maintance plan. Which had its up and down. After merely 4 months doctors found an unrelated donor . It's been a year since my bone marrow surgery, which has been a scary rollercoster. But I'm happy to say that I'm doing great now. Back on my own raising my 3 kids by myself back at work and taking it day by day. If you have any questions or just want to speak to someone feel free to email me at mjdiaz81@yahoo.com take care and stay strong.

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