Sunday, April 20, 2014

Dealing with Weight Gain during Remission from APL while on ATRA/Tretenoin

When I was first diagnosed with cancer, I was immediately subjected to tons of antibiotics, medications, and chemotherapy.  I lost a lot of weight.  I traveled everywhere with Zofran, my new best friend.  I lost 28 pounds in five weeks.  I was expecting the weight loss, everyone I knew that suffered from cancer (of any type) would look so sickly and swimming in their skin at some point. 


Now, I’m in remission and undergoing maintenance therapy.  I take lots of pills daily for the first year of remission.  Ah, I just love that word: remission.  Well, I have packed on the pounds.  I gained back all I lost and an additional 30 lbs.  I weight 180 today.  I have weighed 180 (give or take 5-10 lbs) since November.  I started my maintenance therapy in October.  Yes, that last 20 lbs I gained happened in ONE MONTH! 


I am trying to be more active.  Sure, I am still fatigued.  I am tired all the damn time.  I get tired at the drop of a hat and then take a 2 hour nap like its nothing.  I wake around 5 pm and decide to take a shower and start my day.  And then there are moments like this, when I’m up at 4 am and can’t fall back asleep (and I wonder why?) 


My new favorite apps are Runkeeper and MyFitnessPal.  I have them on my phone and use them all the time.  I log my food in a diary that tracks my calories in MyFitnessPal.  Runkeeper tracks how far I walked (like a gps & pedometer combined) and calculates calories burned based on my distance, time, and weight.  I should be losing weight.  Should be…yet I’m not.  I’ve been on these since December, and I have noticed one trend:  as long as I’m active and not eating just junk food, I lose weight on my non-ATRA weeks.  ATRA is my main maintenance drug.  I take 8 pills each day every other week.  So, last week I was not taking ATRA.  I lost 5 lbs by Sunday.  This week is an ATRA week.  I am back at 180 as of yesterday.  Thank goodness today is Saturday.  ATRA is almost over.  Next week, the 5-10 lbs will drop and I will go through the process again. 


Is anyone else having taking meds and having problems losing weight?  I am constantly focusing on the weight gain, and I know I shouldn’t.  It’s hard, though.  It’s hard to look at myself in the mirror and be okay with how I look.  I am uncomfortable being this big.  I use to average 150 lbs.  In my best shape, I would be 135…and looking pretty good with my curves.  It depresses me.  I try, but then I also let food get the best of me.  It feels wonderful to taste food, and it is amazing to appreciate food and something as simple as flavor again. 


  1. Hi Lisa,

    Fellow CLL’er from Toronto. Stumbled on to your site while researching for my own, coming online soon to a computer near you! I’ll pass along the link in another week or so when I’m up and running. You’ll be able to read my entire experience at that time if you so desire.

    You’ve got a LOT of great material here. I especially love your mindset. For me, mindset and outlook has made ALL the difference in the world. I recently outlived the original prognosis handed to me when I was first diagnosed with CLL back in 1999 when my doctor said, “You probably won’t live to see your 60th birthday.”

    SURPRISE! Not only am I still here, but at age 60 I’m probably also in the best shape of my life having been in complete remission going on four years now!

    I’d like to keep in touch and share notes with you along our CLL journey.

    Skype: russhamel
    Phone: 416-877-5312

    All the best from Toronto,

    P.S. I want to encourage you to continue to post to this blog! Use EVERY WAY possible to get your message out. I know from my own blogging experience, many people are lurkers - they are there, benefiting from what we share, whether they interact with us or not.

    1. Thank you! What an inspiration you are-- may you have 60 more years Russ! Trust me, I am going to keep writing, just wish I had the energy to do it daily!