11 replies to this topic

[Tom_Mack]

Hello all,

I was just recently diagnosed with CML a few short weeks ago and have only been on Dasatinib just over a week now. The doctors also have me on Hydroxyurea and Allopurinol for another week to help normalize my blood. In the short time since being diagnosed I've lost some weight. In the one week between my previous doctors appointment I lost 16lbs and have since lost another ~5 in the past few days. I've seemed to reach a plateau though, thankfully and to be honest I'm loving the leaner healthier me. My question is for those who've been living with this and can relate; What can I expect in regards to weight loss/gain? I feel great, I'm drinking more water than ever, eating healthy, and even getting some moderate exercise. But I'm still shedding body fat and I've only been this skinny when I was in the military years ago (I'm 27) or a teenager. Being that I'll be getting off the Hydroxyurea and Allopurinol, I'm interested in to know more about Dasatinib. One of the side effects is weight loss, so can I expect to live a little thinner than I have been in recent years? Or once blood levels return to normal and the disease (hopefully) goes into remission will I plump back up again? Please, share your experience with weight loss and Dasatinib.

[0vercast]

I'm really curious about this, too.  I don't think I'm in control of my weight anymore.  I've been on Gleevec for two months now, and during initial treatment with Gleevec 600mg, Hydrea 4000mg, and Allopurinol, the weight just fell off me scary fast.  I don't think it was all fat either, it was muscle, too.  I could feel it in my legs, obliques, ribs, and buttocks areas.  Over the course of 17 days of treatment, I went from 6' 4" and 229 upon hospital admission, to 245 a few days later (water weight gain from IV saline) to 210 lbs two weeks later, and it hasn't returned in the 6 weeks since reaching 210.  In fact, I don't seem to be able to gain or lose weight, not even a pound.  I've been experimenting with different diets and exercise routines.  Not a pound lost or gained.  Can't explain it, either can my Oncologist.  He says people tend to gain a little weight from TKIs due to water retention.

Joe

[OhRose]

Hello, I was dx in Dec and I am on Sprycel since then. I have a real problem not losing weight. I drink 2 ensure a day to maintain after losing 30 lbs before dx. I do not have much of an appetite. I was told I would probably gain weight but not so far. I am guessing there must be others on TKIs who have this issue. This does not address your medication but I assume there are some similarities with these newer meds. My best to you.

Rose

[Lizzybee]

I lost 23 lbs before my diagnosis and 2 more after.  After I started getting healthy, my body decided I needed that weight back. I knew I'd gain back a few pounds, because my lowest weight was the day after I got out of the hospital with fever, vomiting, gagging on food, etc.  But 10 months post-diagnosis, I've gained back all but 12, and it's getting harder to keep it off.   I am trying to do a better job of watching what I eat and exercising at least 5 times per week.

[Susan61]

HI Bill:  I think a lot of us are going to find it hard to follow all the information you are giving us.  I see you are a BMT survivor, and not in Chronic Stage of CML like we all are.  We are talking mostly  about what our TKI drugs have done to our systems.   Some of us have gained weight, and others have lost and not been able to gain it back. Are you on a TKI drug for maintenance from your BMT?

     You seem very knowledgeable about the body and how it works.  Have you gone onto the BMT section of the boards, as that would probably be very helpful to a lot of survivors like yourself.

     I wish you well with continued health since your BMT.

Susan

[Susan61]

HI:  First let me welcome you to our group, and your like everyone else who has just been diagnosed.  You have so many questions floating through your head with regard to the What If's of CML.  We are all different in how our bodies react to our TKI.  I have been on Gleevec now for 11 years, and have had all kinds of side effects.  My weight issue has been a weight gain which was a side effect of the Gleevec, and it has been a real problem for me due to a lot of other issues.  I have trouble losing the weight.

     My advice is not to dwell on if you will lose too much etc.  Just take one day at a time, and as long as your blood counts are going in the right direction as you take your TKI would be the only thing to concentrate on right now.

I hope your feeling well with not too many side effects, and they will take you off the Hydrea and Allopurinol eventually.

Its all typical protocol when first diagnosed to get you where you need to be.

   We have a great bunch of people here, who are always ready to answer any questions you have.  You can be sure you will find someone who has experienced the same thing as you at some point in their journey of fighting this disease.

   Also, keep in mind that you have the type of CML that is very treatable.  Just plan your future, as you will have many years ahead of you.  This coming December will be 14 years since my Diagnosis, and I hope that helps you a little bit.

Susan

[kellbell]

Hi, I am taking sprycel for almost 5 months now and not to much luck with wieght loss.  I gained 25 pounds the year before dx which is not like me. I didn't take any of the other medicine you mentioned.  My blood tests are all normal now, and I do have more energy so I am exercising almost daily and eating healthier. I have only lost 5 pound in the last 4 months though. Ive never had to work hard to lose wieght, I really never even tried to until now.  One week I was so happy to see the wieght going down, and the next week it was back up where I started. I have been keeping the 5 pound off and hopefully will eventually get closer to my original wieght before I gained the 25 pounds.

[cleocans]

I am on 100mg Sprycel but I have the opposite problem.  Sprycel makes me retain water all over so I have put on weight.  I'd say I have put on about 16 lbs of water weight.  I lift weights 3 times a week.  I do running intervals once a week then walk or do slow runs on the other  days.  I eat very clean too.  I take a diuretic but it only maintains the water weight unless I eat too much salt.  Then it will take a few days before the weight goes back down to maintenance level.

Kim

[Trey]

Thanks to L&LS folks for removing the offending posting that was previously here.

[Billjr]

I removed my offending posts. Not the LLS.

[Trey]

Even better.  Thank you.