25 replies to this topic

[dee145]

To the people that know me I am back!!!!   I need some advice and help please.  Is it just me or does everyone get bloated on Gleevec? It seems to be getting worse, I look pregnant and I am only 5 ft tall.  I have gained more weight, hit almost 150, I have never weighed that much in my life and I can tell in my breathing I have the extra weight.  I joined the new gym in town but the Gleevec affects my legs so bad I am working at a snails pace but I am giving it my best shot!!!!  But this bloating has to go...what can I do?  By the way the anziety the drs kept telling me I was having wasnt anxiety.  I finally saw a neuroligist and they were tremors caused by a pill I was taking so he gave me Topamax cuz my migraines were coming back full force and the shaking stopped, feels great to not have that shaking on the inside but the Topamax was suppose to make me lose weight also.  Well, I am still waiting on that part!   Do other people get bloated and gain alot of weight on Gleevec also?  Like I said I am only 5 ft tall and its affecting my breathing and now I snore really, really loud my husband says. I sleep alot on the couch.  Please help!!!!!    Will continue at the gym on my bike and treadmill, my legs are to weak for anything else at this point.

                                                                           Dee145

[LLawrence]

I did have some bloating, nasal congestion, eyelid edema, etc with Gleevec.  Mine wasn't so bad, so I didn't ask for treatment for it.  I did find that watching my salt intake helped as did increasing my water drinking.

Good luck

Leesa

[Tom1278]

After the bone pain went away in the first few weeks, I didn't have any side effects.  Then came the bloating... there were some days I felt pregnant!

I read some advice on here about exercise.  I got into an exercise routine (3x a week, 20-25 minutes, breaking a sweat each time), and the bloating went away!  During the end of tax season [I'm a tax accountant], I stopped exercising for 2 weeks or so, and it started to come back.  I picked up the exercise, and it was gone.

I can't recommend moderate exercise enough for Gleevec bloating.  I've maintained a stable weight that way, too.

[nivekbed@comcast.net]

I am so glad I finally sighed up for this website. I was diagnosed in 2007 with CML. I have been on Gleevec more  than on Tasigna. The side effects from the Tasigna was unbearable. I chose to go back to Gleevec and lately I have been able to work up to 4  day without my platelets plummeting. However, I too have weight gain and bloating that is so uncomfortable for me. I have no idea what else I can do except starve! I have never had a weight problem. And now, I don't even look at the scale at the Dr. office anymore because I get so upset with the rising number I see on the scale!! I can't tell you how relieved I was when I read that someone else is experiencing the same thing.

I do exercise, well yoga, palates and now with the warmer weather, swimming. I am now just going to increase the routine and see how it goes.

[tyhernandez]

Dee,  I have been on Gleevec since being dx with CML in November 24, 2010.  One of the things I complain about the most is the weight gain and the bloating.  When I first started on Gleevec I would have 10 pound weight swings in a matter of days.  I knew this was from the bloating and I wasn't too concerned with it, because my weight would retrun to it's normal state.  However, lately I just keep gaining and gaining and I can't seem to stop it.  I have my good days and my bad days.  My energy level is nothing compaired to what it was prior to having CML.  I cannot loose weight.  I keep gaining weight and now I weigh more than I ever have in my life.  I also get migraines, as a matter of fact, I was out of work yesterday due to a migraine.  I still have the headache today, but at least I'm able to function today.   I have nothing that can stop them.  I try to get on an excercise routine but some days I'm so tired I can hardly walk.  Some days I have a lot of nausea and cannot eat, so my eating is off and on as well.  I know that my poor body is just in a constant flux and so far the only thing I'm able to do consistantly is gain weight.    My doctor said that the first three years of having CML is hardest on the body.  She said it's just a matter of allowing myself to adjust to "my new normal."  I have a hard time not blaming myself for the weight gain, it's the feeling out of control that is so very frustrating.  I wish I had an answer to your question, but I have the same question - How can I loose weight while taking Gleevec?  How can I get my energy levels back to at least a consistancy that I can regurally exercise.  It's very frustrating.  This is my first post.  I deceided I needed to talk to people who understand what I'm feeling.  I've tried talking to family and friends.  They try to help, but they just don't get it. 

- Tonya

[Susan61]

Hi Dee:  This weight gain thing is horrible, and I did not realize how many people have been going through it who are on Gleevec.  I also go through periods of bloating.  I know exactly what you are saying.  I was never thin, but it has really gotten to the point where I have to do something to get the weight off.  It has effected my legs and walking.  No energy, etc.etc.  Weight Gain is one of the side effects of Gleevec, but it does not seem to bother everyone.

I wish I could say more to help, but I have to find my own way right now of how to beat this issue.

Maybe someone else has some advice who has gone through this, and knows how to get the weight off.

[Susan61]

Hi Tonya:  I see this is your first post.  I hope its just the first of many more.  Welcome to our group.  You can get on here and talk about anything your going through.  We understand everything that goes along with these TKI drugs, and in most cases can help you out.  I have been on Gleevec since Oct. of 2000, and have had many side effects which I have to say that some have gotten better than others.  The weight gain is a real issue.  Hopefully we will figure out what to do.  I have dieted and seen very little results.  Then I say the Heck With IT, and go off the diet.

Hope you got some relief listening to others with the same problem as you. 

Susan

[tyhernandez]

Susan:  Thanks for answering my post.  I have done the same as you in trying to diet and then say the heck with it and go off of the diet.  My problem is that I get such an upset stomach if I do not eat enough food with my Gleevec that I will throw-up.  So any kind of "diet" doesn't seem to work.  My doctor has told me to NOT concentrate on food and focus more on exercise.  I have been trying to do this only I am often extremely fatigued and the last thing I want to do is exercise.  He tells me exercise will help with the fatigue, but I don't think he understands the "type" of fatigue I'm talking about.  I must say, I'm sick and tired of feeling sick and tired. :-)

    ?

It's nice to talk to people who understand what it feels like.  So what I am attempting to do is to exercise on days when I am not feeling such fatigue.  However, the reality is on days that I'm feeling really good; I'm busy making up for lost time on the days that I wasn't feeling good.  Sometimes I think I'm just making excuses, but then I remind myself that I'm truly tired and my body demands rest.  I'm glad to hear you have been on Gleevec since Oct. of 2000!  Has it worked well for you?  I have been non-detectable for 6 months and I'm very happy about that. 

Any advice you can give me regarding exercise and weight management would be great to have.  I too have never really been "skinny" but I was never as heavy as I am now and I feel miserable when I see myself in a mirror, I almost don't recognize myself because I've put on weight in such a quick amount of time.  Everyone tells me to set a scheduled time to exercise so I get into the habit of doing it.  That sounds like great advice, if only I get my fatigue to follow that same schedule. :-)

[Susan61]

Hi Tonya:  Its been almost 11 years that I am undetectable..  You are doing good, and thats what we really need to concentrate on.  The fatigue is still something I deal with.  I have trouble doing real exercise of any kind, as I have bad Arthritis through my back and knees.  I do have days where I can do things, and keep moving which I have to be satisfied with right now. I am probably a lot older than you also.  Just do what you can do when you can do it.  I know what your saying about the eating enough food to avoid the nausea with the Gleevec.

    I have found that you need to eat a substantial meal before taking the Gleevec.  Some people prefer to take it in the evening with a dinner.  I have always found it easier to just take it with all my other pills with breakfast, but I do not like to eat early in the morning.  I love my coffee, so I do coffee first in the morning.  Then I eat breakfast a little later on, and then take all my medications. Then I have no problem.  Just take one day at a time.  Think about how good your doing beating your CML, and thats the most important thing.

     My husband tells me that if my body is saying I need rest, then to rest.  I really do get very tired after doing something like just going out food shopping.  I have come home, and put the groceries away and sat down and dozed off.  Then I get my second energy to do more.  You will find what works for you eventually.  I have done housework at 11:00 at night when I have had a burst of energy.  I have learned to be satisfied with the things I can do.  I used to work a full 40 hour work week, come home and cut the grass on very large property.  Come in and cook dinner, then go do a few loads of laundry.  I realize those days are long gone for me now.

   You will work it out to meet your needs.

Susan

[GerryL]

Hi Tonya,

I've been on Gleevec since July 2010, and though I haven't put on weight, I haven't managed to lose too much of it either. When I talk to my Specialist about the issue, he just tells me that it comes down to calorie intake against exercise, nothing to do with the Gleevec. Mind you I had increased my exercise and don't eat much junk food or takeaway and still have nothing to show for it. Fluid retention contributes to the weight, so I take the occasional fluid tablet, particularly when my blood pressure has gone up as a result of the fluid. I keep an exercise bike in my lounge room, so I can't escape it, and ride for around an hour most nights of the week. I put a DVD on the tv and just watch it as I ride. I've also added a small amount of interval training, which appears to have assisted me in losing a little bit of weight. I also do yoga twice a week and have a twenty minute walk to the train station during the week. I've now managed to do light weights as a result of dropping my Gleevec dosage down to 300mg, prior to that I felt I had little strength on the 400mg. I'm waiting to see if anything happens when I have a go at coming off the Gleevec after October.

Anyways, welcome to the board.

[pamsouth]

I have been on Gleevec since 2005.  I have recently lost 30 lbs going to Jenny Craig and working out.  However the belly fat is hard to get rid of.  I did get rid of one blood pressure pill.  The other pill is part diuretic & part blood pressure pill.  It has been hard to regulate the fluid and blood pressure and the diuretic pill.  Blood pressure would drop to 100 or below and cardio doc said don't take it any more.  However after about 4 days my wieght will go up about 5 lbs and blood pressure creeps up to 140/88 or something like that.  I know it is just the body adjust the fluids, at least that is what people tell me, however if I don't take the diurectic a few days the hands will swell up and blood pressure goes up.  The pills from Medco were capsule, but I got the same thing from Meijer in pill form.  Less than $3.00 for 90 pills.  Anyhow I split the pill in 1/2 and that seems to work for 4 or 5 days than blood pressure drops to low so I go off them for a couple of days.  I have tried taking than every other day, but it doesn't work as well as splitting the pill in 1/2.  I think it is just something I am going to have to watch and live with.  I did cut my exercise back to 3 days instead of 5 days.  It seems the more I exercise, my blood pressure gets to llow than I skip a couple of days of exercise and than it goes up.  So again I will probably just have to keep taking my blood pressure in the morning and evening and adjust the diuretic as needed.  Don't think there is much else I can do.  I hate taking it as have been told diuretic are really hard on the kidneys and by GFR runs a little low.

Pam South

[tyhernandez]

Thank you to all of you who have answered my posts regarding weight gain.  I have come to the conclusion that I need to think about this in an entirely different way.  It is hard to look back at my energy levels prior to CML and compare "my new self" to" my old self".  After reading your posts, I realize you have all had to work at this same issue.   My body is responding well to Gleevec and I couldn't be happier about that.  It's hard sometimes to remember to give myself a break and give my body credit for the battle it is fighting every day to keep CML at bay.  So far, thank God I am winning that fight.  Yes there are days that I am really tired.  There are also days when I am not tired.  I have realized after reading all of your wonderful posts that I need to take each day as it comes and remember that this too shall pass. 

My doctor keeps telling me if I would exercise on days I'm tired, I'd feel better.  I keep thinking that he hasn't a real clue as to how tired I truly am or he would not tell me to do anything physical.  He should just agree with me and give me a "doctor's note" to go to bed.    Then I realize that he isn't asking me to run a marathon, he's telling me to go for a 15 minute walk and then go take a nap.  Maybe I should listen to him about that and stop being so stubborn about exercise.   I am pretty sure I can walk for 15 minutes, even on the days I'm feeling extreme fatigue especially if I know I am going to reward myself with a nice nap afterward.

As I adjust to my new normal, I realize I need to give myself a break.  Celebrate my wins and don't be so hard on myself because I can no longer keep up with my old self.  No one else is putting that pressure on me.  I'm the one putting all of that pressure on me.  My husband and my son seem perfectly happy with the new me.  I think they are just happy I'm still alive! 

With that being said I went on to Runner's World website and downloaded a "Get Moving Plan" As I look at this plan, I am encouraged as to how doable the plan is.  I would encourage others to find a similar plan.  If this doesn't work for me, then I'll keep looking until I find something that does work.  Don't stop looking until you find something that works for you too. 

Thank you again for your wonderful encouraging posts! 

[Susan61]

Hi Tonya:

   Very Beautifully Said.  I have nothing to add to that, except that a lot of these plans like Jenny Craig and Weight Watchers etc.  are a lifetime plan.  They work great, but if you stop it you gain back all your weight plus some.  I have seen this with so many people.  I guess we just have to try to eat in moderation, and see how that works with our TKI drugs.  Some people are tougher than others with their determination too.  We are all different in how we handle everything in our life.  Wishing Everyone with this struggle the best.

Susan

[Fas]

Hi dee145,

I so get the weight thing.  I have been on Gleevec since 2002 and have found it incredibly challenging to lose weight.  It is a difficult and slow process.  Waxing and waning bone/muscle pain and cramping along with fatigue make intense workouts tough, so daily walks have been very successful at helping to manage weight, as well as muscle cramping.  Also find swimming very good exercise as it is gentle resistance on my muscles.  The other thing I have noticed is that over the years I have become more sensitive to certain foods and I feel best when eating mostly a vegetarian diet.  Bloating is not an issue when I eat a good combination of raw (salads), cooked veggies and fruits.   It is a constant battle and I have to be so much more mindful of what I eat.  Wishing you the best with this challenge. 

Fran  

[kellbell]

Hello,  I haven't been on here in a while but sometimes I check in just because it's good to see others who I can relate with.  I have been going to the Dr's office and complaineng to my onc. about my weight gain and bloating.  I am on sprycel and sometimes get very frustrated because I exercise more and eat alot healthier than I used to and I just keep gaining.  I insisted this to my Dr's and they say after doing some blood tests for thyroid and I don't know what else, that I need to whatch what I am putting in my mouth.  I am so happy to see this post because I was starting to think I was having the wrong idea of what is a healthy diet.  I thought maybe I am eating too much, but if I watch what I eat anymore it will be barely anything.  It is also good too see that my feeling of it being harder to move ( my legs mostly ) is real and others experience it also.  I hope eventually I can figure out a way to feel good and lose some wieght and that this will balance itself out. I just keep trying and hope for the best.  I will have to get used to having to keep up with it I guess.  I wish the best of luck for you on this issue and I too keep thinking positively, I am lucky to have this medication to take and I am feeling alot better than I would without it.

Kelly

[alexamay09]

Hi kelly and Dee

i have gained about 25 lbs since diagnosis and have horrible bloating. i am tiny - well under five feet and have gone from being fit and normal to humpty dumpty and out of breath climbing the stairs. i know the meds are saving my life but it is horrible!  i joined a slimming group on Thursday and am following to the letter. i hope i will be able to lose some of this weight. embarrassingly i also have a gas problem! its fun all the way with cml

[kellbell]

I know how the humpty dumpty thing feels, I even walk with a sort of waddle sometimes. It is an effort to go for a walk. It is horrible! I gained 40 pounds now, but the wieght gain started before I was dx about 6 mo. to a year before. I keep saying I'm not going to gain anymore and then I tried on my summer cothes recently and.... they dont fit! I can't believe I am still gaining after all the changes I've made to lose wieght. I guess I have to  do more and I will!

Best of luck,  Kelly

[cleocans]

I am not on Gleevec but 100mg Sprycel.  I to have put on some weight and have bad water retention.  I take a diuretic everyday, 40 mg and really have to watch my sodium intake.  I still exercise and eat right.  Nothing really helps so far with the weight/water problem. 

Kim

[kellbell]

Well It's good to know at least that it's not me doing something wrong and it is a struggle for others here too. I was wondering about a diuretic. My onc doesn't think I need one so I guess it's best to take the least amount of meds as possible. I am strongly considering switching Dr's though.  I was hoping to hear that a diuretic would be the answer, but I see that isn't it either. Oh well.

[cgrave2]

I was dx with CML in 10/2010. I've been on Tasigna the whole time. I was 51 yrs old at dx, and starting to show signs of menopause. The problem is, that some of the symptoms of menopause are also the symptoms of CML. ( night sweats, fatigue, etc). As the Tagisna put me in complete remission after 1 yr., it also put me thru menopause very rapidly, and I gained 40 lbs. in about 6 months!

I used to take a ballet class twice a week, and walk my dog regularly, but started having terrible heel pain. I can no longer do either of those activities. Last week, I started having mouth problems similar to thrush. I went to my GP and she said I probably have a B12 deficiency! I had a blood test and sure enough, I am very low on B12! I took my first shot and my heel pain has lessened dramatically! I can't wait to see what happens to my energy levels as I have just had one shot so far! My cancer doc doesn't seem to want to talk about anything but my cancer, and leaves the treatment of other issues to my GYN and my GP. Please, those of you with fatigue, get your B12 levels checked!