I have been on Maintenance chemo since October 2013. What's maintenance chemo? Well, for me, with my specific leukemia, I take a variety of pills everyday, including the big three: mercaptapurine, methotrexate, and ATRA (tretenoin). I also take a few other things, but those are to combat some of the side effects of the big three.
Yesterday, I was told by one of my NPs that I could stop the methotrexate and mercap. I also will stop my ATRA pills on Sunday, which is awesome! I am so happy to get my body back into shape.
I say back into shape for a few reasons. Its very hard to lose weight on these meds. I have steadily gained weight during this past year, and now its almost over. I've gone to a podiatrist to treat plantar fasciitis and overpronation due to rapid weight gain/loss and balance issues from being neutropenic so many times over the past 2 years. I wake up nauseated every morning around 4 am. Some days I am not hungry at all and other days I can't stop eating. Oh, and the headaches are awful. So, yes, I can't wait to get my body back. I want my immune system and my blood to normalize. I want my weight to normalize. I want my muscles to come back full force (just in time for the apocalypse).
Its very exciting.
And in one week, I will be at the hospital getting yet another bone marrow biopsy. If this is clean, I will be in survivorship officially!
Hi Lisa- I just stumbled across your blog - I was diagnosed with high risk APL last October 23, 2015- it's been great to read through some of your posts- I just started the maintenance with Atra, Mtx, 6mercaptapurine- had to take a break after 5 wks as liver numbers started going crazy- back on last wk with slightly reduced dosage- was glad to see that weight was an issue as mines been creeping up but I thought it was being too tired to really exercise enough and back to "regular " eating once out of hospital! I couldn't find people to talk to about APL so I made a Facebook page (APL survivors) and it's been interesting to hear the varied protocols people in the USA get versus myself in Toronto, Canada- your protocol sounds similar...I'll keep reading- thanks for posting!
ReplyDeleteThanks for reading and commenting Amanda! I wish you the best, you can do it!! I hope i didn't scare you with all the junk that is happening to me now...its all little but feels cumulative sometimes. Either way, I'm blessed to wake up every morning alive. I still deal with fatigue, in fact, its 5:30 pm my time and I really need a nap. But, if I nap, I will go down for 2 hours, not 20 minutes like "normal" adults do, lol! I will miss dinner, and won't wake even if my boyfriend tries. So, I just have to immerse myself in something to keep me going until 6:30. Best of luck to you, and remember everyone's cancer story is different, but its oddly comforting to get to meet someone that had the exact same crazy rare one!
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