Hi....I was just chatting with some women on this board......the first year of cml, I gained 30 pounds. The perfect storm: menopause and cml.....and I spent almost nine months in bed. I used to be tiny! Not anymore....boohoo.....in total I gained 40 pounds on my 5 feet 4 inch small frame. Do I win the trophy for the most pounds?!!!!!!! I used to weigh 120------even after 3 kids----I look at pictures from the year before diagnosis and cannot believe how thin I was! That was six years ago.............my kids are surprised at how little I eat for being this f-a-t! No emotional eating......thank God or I'd be even bigger! Did this happen to anyone else? Just curious.......will be 55 in November......Lala
Have you gained weight?
Posted 07 August 2011 - 07:06 PM
Glad you started this conversation Lala, because its not just the drug that is doing this to people. Like you mentioned the emotional eating thing. I think we probably have some who just do not want to admit they have the problem. I admit to it myself, but I do not want to admit to how much I gained. If I can ever drop some of this weight, I will eventually reveal what my actual weight is now. Maybe this will help somebody else. What happens with me is the additional weight from the Gleevec, and then I think there is a difference between Stress and Devastation over something. When I have to deal with a major problem then the devastation sets in where I cannot eat at all. When I am just stressed from the everyday aggravation of life in general, I tend to use food for comfort as they say.
If anybody has any ideas on this subject I would love to hear them. I do not think my CML will kill me, but the weight issues might get me first.
Also, my mothers side of the family all have weight problems. I am curious about that too.
Posted 07 August 2011 - 07:31 PM
I haven't put any weight on, but I also haven't managed to shift any. I've decreased my calorie intake and increased my exercise regime, but nothing is changing.
Posted 07 August 2011 - 08:18 PM
Luckly I have not gained but maybe lost about 5 or 6 due to GI issues. My BMI has always been around 23 so at least I have not had to deal with that issue. All the women in my family are thin so I guess I got the right genes there. Also, I have run for about 25 years before this and I am attempting to start running a little again but think I will try a yoga class.
Posted 07 August 2011 - 08:58 PM
It's only been 6 months but I've been able to keep exercising. In my earlier days I was very seriously into rock climbing - horribly weight dependent sport - and so weighed myself every morning. Then I moved back to running and kept weighing myself more out of interest. My weight has been stable 55-57kg for years. With gleevec I can jump or loose 1-1.5kg in a day which I could previously never do other than with a serious christmas dinner or being very sick. Now I can tell by looking in the mirror at how puffy my eyes are to see how much "puff fluid" I have on board. It pisses me off but it is not a major contributor to my weight. Do you think much of the extra you is fluid?
In the first 3 months I was doing much less exercise but also much less eating because a full tummy caused nausea. If it wasn't for the nausea I'm sure I would have packed it on because I was sad (for both CML and non CML reasons) and eating makes me happy.
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
Posted 07 August 2011 - 10:09 PM
Hi: Thats why I mentioned the two different types of stress. Something traumatic will make me lose my appetite completely, but the everyday constant stess is what causes me to eat without even realizing sometimes that I am picking on things that just add up in calories. I also cannot do any exercise, due to some bad degenerative disc disease which puts my back in spasms. Then I have the bad Arthritis in my knees. I try to do some walking, and I am in agony with the pain afterward. I think thats great for people to be able to exercise and do the running also. Keep it up because it will certainly help.
Posted 08 August 2011 - 07:45 AM
I have gained about 20-25 pounds since DX in March 2010. I know a lot of it is fluid retention. My last dr visit I asked for a water pill because I have finally had enough of the bloated feeling and super puffy eyes. My eyes get so bad in the morning that there are days I look like I just went ten rounds. I actually told the doc I either needed a water pill or a "cut man" to come over every morning . I have found the pill makes me feel weird and increases my leg cramps - especially when it is really hot. The first 2 days that I took it I did lose about 9 pounds so I know my issue is fluid retention. I am hoping once fall gets here I can take the water pill on a more constant basis to get rid of this extra fluid/weight.
Posted 09 August 2011 - 06:10 AM
I think I am fairly typical in terms of side effects of fatigue and 10-15 lb weight gain and am interested in what weight loss programs those with CML have tried with success that are safe to use with Gleevec.
Posted 09 August 2011 - 06:52 AM
Before I was put onto Glivec (Jan 06) my weight fell to 99lbs (I'm 5'2") so I tried to rebuild my weight back to about 110 lb (I'm happy anywhere between 110 and 115). However I kept gaining regardless of limiting food intake and exercise - which is not easy with CML. I am now steady at about 125 - 127 it varies on a daily basis. I too suffered the double blow of CML and menopause hot on its heels. Planning to talk to my consutant on 16th about water tabs for the fluid retention around my abdomen - I know it's fluid as it leaves me feeling bloated. At least my clothes still fit - albeit a little more snuggly.
Posted 09 August 2011 - 10:40 AM
I have gained weight while taking Gleevec but I think this is because of the fatigue that I have, I am so tired all the time just walking around a store wipes me out for the rest of the day. My doctor says he doesnt think it is from the Gleevec but nothing else has changed in my life, I have been going through this for over a year now. If I wasn't getting results with the Gleevec I would have moved onto a different med just to see if I had more energy. I am already on a water pill and that doesn't seem to change my weight that much just helps with the puffyness.
Posted 09 August 2011 - 12:45 PM
HI: You could very well have a good point. I am on Gleevec for quite a few years,but if I go out to do some shopping I come home wiped out and worthless for the rest of the day. Sometimes I just need to sit for a little while to get my energy level back up, and then I could keep going for hours cleaning the whole house. Also, do you sleep well at night. I do not sleep good, and just today I had to get up early after a bad night to go to the lab to get some blood work done. I came home exhausted, and figured I just needed my coffee because it was a fasting blood test. I had my coffee with light breakfast, and within an hour I needed to take a power nap to get my energy back. Now I am fine, and just did a few things around the house.
It just makes you wonder what makes us feel like this?
Posted 09 August 2011 - 01:19 PM
Wow, fawnc, you sound like me! About six months ago, I started taking my gleevec differently, and it has helped mucho! Instead of one 400 killing my stomach all night long and having deep chronic fatigue in the mornings, I take it in 100s-----2 in the morning and 2 later in the day......there is a huge difference! For six years, I did one thing each day, and then came home and died on the couch. I would teach for a couple hours and that was it - home to the couch. I feel better than I did back then, but still need energy. Just keeping up with life is all I do....work mornings only, rest all the other times. No going out with friends....I bet if I lost 30 pounds I would have more energy! I wish I had someone to cook for me! I really don't eat much....love fruits and veggies. The first 30 went on like crazy....in one year!!!!!! Think about the 100s....Lala
Posted 09 August 2011 - 01:59 PM
It seems like we never get a break. When I went off G last fall for five weeks I lost 6 lbs in 3 weeks, no puffy eyes either when I started on Sprycel there was no change I tolerated S okay, so I didn't have to see onc for 3 mos. Boy I was strutting my stuff I could button my jeans and didn't look like a racoon anymore. I felt like not bad for an old broad. I went for my 3 month check-up and I gained 12 lbs in 3 mos! That was the end of my strutting now I just bury my head in the sand. It was winter and I usually wear baggy sweats so I didn't notice the weight creeping up on me. I went home and called the suicide hotline they hung up on me.
Take care Billie
Posted 10 August 2011 - 07:28 PM
Good God, yes! Not that much yet, maybe about 5-8 lbs since dx'd in April. Partly due to fatigue, partly due to "I have cancer and I deserve some chocolate cake" syndrome, and partly due to added stress at work. On days I feel good and can exercise, I am sometimes snowed under with work and have to work at night. And then I am so busy with work, I don't have the time to cook healthy meals, so I order pizza. And then I have some dessert, because "hey, I worked until 9 pm tonight, and I deserve a treat!"
Between work and CML, it's wreaking havoc with the calorie intake vs.calories used.
I see my onc next week, and my PCP the week after that. I'm sure he'll want me to do something about my blood pressure, which I know must be up because of the weight. I don't want to take BP drugs,too, either. So I must find the will and the energy to lose the weight. Just need to get serious about it.
Posted 10 August 2011 - 08:23 PM
I was diag. in Feb2011 and up until then I actually had low blood pressure. Since starting my G I have not gained any weight but my BP went up to the 160's over the high 90's so now I am on BP meds. It is a low dose and my BP's are at 120-30's over 60-70's. It may not be the weight so try to get it checked regularly. I work in an operating room so I check mine daily. There are grocery stores in Erie that have free machines so maybe during grocery shopping you can check it weekly and get an good idea what it really is. Most (including myself) have white coat blood pressure which is we see the white doctors coat and our pressure goes up.
Posted 10 August 2011 - 08:28 PM
I came off BP medication after starting Gleevec - but when the fluid retention is at its worst, by BP goes up along with it. The fluid tablets I take a few times a week have BP med in them, brings it back down to normal.
Posted 11 August 2011 - 01:56 AM
Although I feel I have always had to watch what I eat and exercise to keep my weight down it seems to be harder now. I was diagnosed a year ago with CML. I am 55. Started on Tasigna but switched to Gleevec. I believe that my problem is a combination of emotional eating, the gleevec and feeling more tired. Seems like I am always tired. I get through my work day but I am not as active as I used to be especially after I get home from work....before the diagnosis I was running/walking 20 miles per week. I know that exercise will give me more energy if I do it. I get frustrated because it seems like I never feel good anymore...so I eat hoping it will make me feel better..... I am trying my best to get back on a routine of exercise. My weight since diagnosed has increased 10-15 pounds.....not good especially because I already needed to loose 20 pounds before that.....It is frustrating for us women...especially with menapause too. We all just need to hang in there and try to eat better and get regular exercise.......easier said than done!
Posted 11 August 2011 - 07:43 AM
I was diagnosed in 2002 and within a few years I gained about 25 lbs and I have stayed at that weight since. But now I box and I lift weights, I haven't lost weight but I haven't gained anything in years!
The reason I think I gained weight is because I was taking my gleevec with dinner and I would get upset stomachs if I didn't eat enough food before taking my pill so I use to eat a lot and a lot of the time it was fast food. I use to work later in the day so I wasn't eating dinner until 9pm and eating that much food and that bad of food that late will add weight for sure.
I started taking my pill at lunch and eating light dinners and I haven't gained any weight since. I have actually lost fat and gained muscle but my weight isn't going down because muscle weights more.
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