I have been on Gleevec for about 5 months now and I still have several side effects. My stomach is always growling and making noises, is this normal? Also, I gained about 15 lbs and can not seem to loose any weight even if I work out. I can deal with the other side effects, but these two are driving me crazy!! Any suggestions from other Gleevec users on how to deal with this, would be greatly apprecieated!
New to the group - I have been in Gleevec for about 5 months now and I still have several side effects.
Posted 24 February 2012 - 01:45 PM
Hi there Mobirdies and welcome... I've been on Gleevec since dx in 2006 and over time I have really honed in on what to expect ( most of the time) when it comes to side affects. That growling in your stomach ...well I've had it ever since I started down this path. It's worse after I eat... and it doesnt matter what I've eaten but it's always making some sorta noise in there. I haven't had the weight gain so much as I don't enjoy eating anymore anyway. I have it down to where I know after eating I have a 20 minute window to be near a restroom if I'm not home. Solution... I don't typically eat when I go out or I make sure I'm able to get home right afterwards. It really sucks but what can you do. Regardless of the fatigue I deal with everyday I still try to stay active and I workout as much as possible. I love to run and its been challenging to say the least. The way I see it is, I don't have a lot of control of whats taking place inside my body so I can at least have some affect on my physical self. The doctors have told me time and time again that my overall physical condition has helped me recover faster from whatever I've had to deal with. There is a vitamin I do take -acidopholus- I believe thats how it's spelt... I just ran out. It's suppose to help with food digestion and I think it may be helping, but to what extent.. I have no idea. I still get all the noises after eating. Not sure if this helps at all but I'm sure others will have lots more to share with you and you can take from their experiences as well. Take care and good luck!
Posted 24 February 2012 - 03:23 PM
Hi Mobirdies - It sounds like we are on about the same time frame in this maddening journey. I was diagnosed on August 5, 2011 and started on 400mg Gleevec September 12. I did have to take a 2 week break early December because I was having a problem with rashes, itching, swelling and water retention and they thought I may be having an allergic reaction to the Gleevec. Anyway, that puts me at about 5 months too. I have a lot of digestive issues and yes, my stomach is always making some sort of noise. I agree with lthouse that it seems to be worse after I eat and it doesn't matter what I eat either. I have had some weight loss rather than weight gain though. I think it's a combination of stress and lack of appetite. I call it the "bonus" side effect! We joke that I'm on the "leukemia diet" - sometimes you gotta laugh to keep from crying. From what I've read on the board, these are pretty common side effects, but it is frustrating. The diahrea is a pain too. I don't have it every day, but some weeks are worse than others. This week - 5 days straight so far and last week only 1 day so I try to not be too far from a bathroom no matter where I go. I'm making my first drive to California from Arizona since CML in a couple of weeks and I'm really worried about driving through the desert in the middle of nowhere for hours with no bathrooms in sight - it will be a very interesting trip!
I've gone on too long and not given you much help except to let you know you're not alone - maybe that will help a little. As long as my numbers are heading in the right direction, I guess it's worth it. I'm scheduled for my 6 month BMB and BCR/ABL test on March 23rd so I'll have my fingers crossed until I get the results in April.
Good luck! - Cindy
Posted 24 February 2012 - 03:58 PM
Hi Mark, I will try the vitamin that you're taking hopefully that will help. Thanks for your feedback!
Posted 24 February 2012 - 04:05 PM
Hi Cindy, I have had and still have some of the side effects that you mentioned, but my doctor told me to keep taking my medicine. The swelling under my eyes is getting better. I wish I was loosing weight, maybe I should stop eating too to lose weight. Have a nice trip and good luck with your 6 months BCR/ABL test!
Posted 24 February 2012 - 04:30 PM
Hi there Cindy... I just had to comment that I think I did lose some weight on the "CML Diet" as I was driving from VA to SD and then back again (just recently). I didn't eat much the entire time on the road!!! I did keep some beef jerky and Pepperidge Farms Soft Choc Chip cookies on hand though! If I'm going to suffer from the GI side affects I may as well enjoy it to the fullest! These particular items didn't hurt me too bad...Oh, I forgot to mention.. Mobirdies, I did find that as far as foods go that don't upset my stomach too much (if this is or becomes a problem) is red meats and white rice. Like the rice you get from Chinese carry out. I'm 1/2 Korean so I eat rice pretty much on a regular basis. You'll find over time as I did and most of us I would imagine, what foods you really want to stay clear of and which ones you can deal with.
Posted 24 February 2012 - 10:09 PM
Hi Mo and Cindy,
Welcome to our site, When I was on Gleevac for over 3 years I had all the gi issues also. My onc told me I could take up to 7 immodium ad, a day. He said you can't become immune to it. I'm on Sprycel now and every once in a while I'll have bouts with the big D so I was told to take 1 immodium in the a.m. and 1 in the p,m.
You have to be careful you don't get dehydrated. Cindy, good luck with you're trip, We have been in Florida the past 2 months, and we are leaving here Monday for home,outside of Erie,Pa. 1800 miles I am already stocked up with immodium,prep h and anything else I might need. I also found that hard red peppermint candy is great for nausea. Sincerely Billie
Posted 24 February 2012 - 11:16 PM
I take probiotics which has helped a lot. Also you might like to try adding some more fibre into your diet, Metamusil etc. it will add some bulk to your stools. I also keep a packet of Imodium on hand just in case.
Take away coffees can give me problems, depending where I buy it from, but I had issues with coffee prior to CML. It now tends to give me pockets of gas along the intestine. Sounds and feels like Rice Bubbles on occasion. LOL. I've been on Gleevec now for 18 months.
Posted 25 February 2012 - 01:04 PM
I get the same growlies, but no real other GI effects. Sometimes a burning feeling in my stomach right after taking gleevec, but nothing else - thank goodness! The noise has quieted down over the months, so now I only get it occassionally - been on G since April 2011. Most embarassing when it happens during a meeting at work! I actually quizzed a few people sitting next to me to see if they could hear it. They said no, so they were either being polite or they meant it. Some days it sounds like a depth charge going off in there! Usually get it in the morning, less often at night, and pretty much never in the afternoon. Perhaps it has something to do with my stomach being most empty in the morning? Or full of coffee??
I hear you on the weight gain. I have gained about as much as you. I also feel it is harder to get it off. I will get my thyroid checked soon, just in case, as my mother became hypothyroid about my age. Gleevec does effect T4 clearance, but supposedly this only effects people actually taking synthetic thyroid meds. However, I figure T4 is T4, and if you are already a little hypothyroid, but still subclinical, the gleevec probably makes it worse. Just my theory, mind you, but it would explain what I've been experiencing. The good thing is that the weight gain has stabilized, so maybe my thyroid has adjusted to whatever effect gleevec is having on it.
Posted 09 March 2012 - 08:59 PM
Billie 1800 miles, wow! That is one heck of a long drive. We live in the middle of Indiana a trip to Clear Water or Orlando would be about 1,000 miles. if we go any father like Ft Lauderdale on the other side we usually fly. I did fly to Clear Water last year, as i didn't want to drive by myself. Then a girlfriend realtor flew down a couple days after me. I was going to drive down to St Augustine and visit a school friend of mine. But any thinking about waiting until next year and take a month vacation. I don't know yet, depends on how much work we get done to our house. It is only 4 years old. But the flat paint they used isn't very flattering, so my husband is putting satin on, that is on his days off. I am picking out some pretty decor and wall paper trim. I want the house to look nice next spring as I want to put it up for sale and move back to Florida, I am thinking about moving around Orlando or Clear Water as it is fairly close to Moffitt Cancer Hospital. My husband went to St Pete Jr college in St Pete back in 1961.
Posted 09 March 2012 - 09:40 PM
Hi Mobirdies, I have no answer to help with dealing with Gleevec side effects. I was on it for 18 mos. and was never able to get over them. I won't say anything to discourage you as I'm sure it put me on the road to staying alive, but I am now happily on Sprycel. Just wanted to pass on a tip. The vitamin that Mark recommended is an enzyme and can be bought in pill form from most health food stores, but if you can't get to one it is also found in most yogurts which can be bought just about anywhere. Just read the labels and make sure the yogurt contains the live cultures. I mention this because I used to live in the mountains of NC and had to drive over an hour to get to a health food store. I hope it helps. Too bad I never thought of it for the stomach problems. Probiotics are the similar, but usually contain more than acidolophilus.
Posted 10 March 2012 - 08:24 PM
Hi Judy,Pam,Mo& Everybody Else,
Boy did I miss everybody, We finally got a router so now my laptop is good to go. And I don't have to sit at my cold desk in the living room corner. I've been home a week and I'm still in a fog. I feel like my brain is on hold, (does that make any sense)? I'm so confused, that's pretty normal for me, But this is wierd.
I might feel better when I get a 2012 calender. With Ron being retired one day just rolls into another. I went to my eye doctor Thursday and she reminded me my birthday is tomorrow. I just said S--T not again.
I'm finally taking the time to go over some old posts that I missed. I tried to keep up while I was in Fla. But too many interuptions. My spelling gets worse daily,I have to get a better dictionary so please bear with me. Hell now I don't know if I have brain fog, or just getting too old.
I had a typical cml day yesterday. Nausea,the big D,headache. Every once in a while I get a day like that, then the next day I'm fine.
Mobirdies, I never did tolerate Gleevac for 3 years, I sure can sympathize with you. Now that I'm on Sprycel for the past 15 months, I feel so much better. Sure we have our bad days and side effects,but nothing like when I was on Gleevac. Maybe your onc will change your meds for you. Good luck Billie
Message was edited by: Billie Murawski PS Has anybody else had a problem with high blood pressure while on Sprycel? And has anyone had trouble taking the bp meds.? I have tried 3 now and they all make me sick. And a couple of them made me feel real depressed. I stopped taking the med while I was in Fla. I see my pcp tomorrow and she'll try another one on me. The nausea was bad but the depression was worse, I felt like another person, and I had lost all my personality, even my sense of humor! We can't have that. I really don't want to go on another med,but I guess I have to. I have tried metoprolol,lopressor,and lisinopril. Any suggestions? Maybe some good old moonshine will do the trick!!!! lot's of love Billie
Message was edited by: Billie Murawski
Posted 11 March 2012 - 12:42 PM
You take bp medication don't you? Maybe you can answer my Question for me! Billie
Posted 11 March 2012 - 01:20 PM
I am so glad you are back in your cozy house, I'm hoping this will help to lift your mood. It's interesting you mentioned high bp on Sprycel because I was going to ask if anybody had low bp from Sprycel. My blood pressure had been high due to steroids but last week it was 102/60. Between the two of us our bp is normal. Also, you mentioned brain fog. I had a little brain fog on Gleevec, some confusion on Tasigna (when I went off each med it cleared up) but I am having significant brain fog on Sprycel, so much so that it is becoming an effort for me to have conversations, or even to reply to posts. I feel like I'm constantly doing brain teasers, you know when you have to stretch your mind to figure out the puzzle. It is getting very tiring. Why do these meds cause brain fog anyway? In what way are they physiologically affecting our brains? ....or do we have too much brain fog to figure that out?
HAPPY BIRTHDAY TOMORROW, Billie, and wishing you many many more.
Judy Judy Judy
Posted 11 March 2012 - 03:21 PM
I like your idea, we'll combine bp and be normal? I'm cancelling my appt. tomorrow.
I try the puzzles,and cryptoquips,jumbled words. My brain is toast! I ran into an old friend,and I went to introduce Ron to her and I forgot his name.Luckily he remembered his name and finished the introduction for me. I'm going to try walking more,maybe that will clear my head, I just hope I don't forget where I live.
lot's of love Billie thanks for the bd wish. I'm not getting older I'm getting dumber!
Posted 11 March 2012 - 10:08 PM
I see the topic is BP and you have High Blood pressure on Sprycel and Judy2 has very low.
I have been on Gleevec for 6 1/2 years. I have been on BP medicine since around 1998. Strange thing is my old BP medicine Verapamil stopped working about a year ago and my heart got out of rhythm/irregular.
I went to cardiologist (a year ago) and he switched me to Metoprolol 50mg. It seems to be working except sometimes BP gets a little low. Doc said take it BP MED'S night. But that scare me to take it at night as you hear of people dying in their sleep because their vitals get to low or sleep apnea. My aunt passed away at age 79, she was suppose to be wearing her oxygen, but most of the time she didn't. Well she told my brother-in-law she was going to take a nerve pill and lay down. Jerry went to get them some dinner. When he got back Aunt nora was lying flat on the couch, dead. She was still warm. Uncle Bob said she had a phone call about 20 min before. My brother and his wife have sleep apnea, and he has a bad heart. They sleep in a recliner and she wears her c-pap and oxygen while sleeping in the recliner.
Anyhow I feel better taking my BP med's when I get up and then i take !mg lorazepam 1mg, to help me sleep at night. I also take a diuretic, my cardiologist said he doesn't like me taking the diuretic as it is hard on the kidneys, however if I don't take them, in a couple of days my hands swell up and my weight keeps going up.
For some reason I am feeling a bit energetic today, Sun. I didn't go to church, I slept in. But it was in the 60's outside and sun really shining like early spring. i did a little bit of cleaning. Hope to get to the taxes tomorrow am procrastinating, but time is getting away from me, so I better just set my mind to end.
FYI, Listening to NCC. They are talking about the titanic and the moon that caused the super tides and floating Ice Berg that floated to the Titanic. I wonder if the atmosphere play with our health or moods.
After all the atmosphere can do some really strange things, with hurricane and volcano and strange weather.
Well it is 11pm need to go to bed.
Posted 11 March 2012 - 10:46 PM
Thanks for getting back to me. I tried the metroponal and it did nothing. The other two just made me sick and feel weird.I take a water pill every day since Gleevac blew me up. I got so bloated I had to have my rings cut off. My fingers were turning purple. It cost a fortune to have them resized,now that I'm off the G and I lost 10 lbs. from being so sick from the bp med my rings are real loose sometimes, I might have to stop wearing them for a while. I'm not complaining about the weight loss,and the rings aren't valuable but I want to be able to wear them. They're pretty,and if you look through a really strong magnifying glass,there are little itty,bitty diamonds in them.
Oh well another bd over with Ron took me out to dinner,the kids never called,go figure. I'll let you know how I make out tomorrow. lol Billie
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