I have been on Gleevec for almost a year. The pain in my bones drives me literally crazy in my head . I'm not going to lie so get ready for the truth because I'm known for never lying. I drink Beer at least 2-4 times a week because of the pain in my joints and my bones especially in my ribs. I was taking 400mg Gleevec a day for the last year and the side effects seem to have just gotten worse over time. I used to be a bodybuilder and can't lift weights because my joints hurt and when I lift weights i don't heal fast anymore so I'm extremely sore for 7-10 days after I work out. I don't workout hard anymore I just am trying to stay fit and stay healthy. Well that didnt work so I stopped working out because I do construction for a living and have bills to pay so I have to work over working out. I feel like i'm letting my whole family down. My wife used to call me Superman and still does but I don't feel like anything anymore. I just feel like I'm getting worse because I'm so weak and have no energy at all. I'm about to switch to Tasigna tomorrow but might wait till the weekend because I have to work and hear I might vomit and get real sick. My question is how many people get the rash and is there a way to treat it because I've never had skin problems at all and I work outside with clients and will be embarassed if I have rashes all over me. I'm already feeling like I'm a prisoner in my own brain. Does it get any better or is this what I should get used to with having CML ? Also I always eat a pretty clean diet because of the bodybuilding but lately I have no urge to eat and I'm not hungry like I used to be. I just feel lost and am looking for some type of answers to if my life will ever be half normal again? My wife is the best support I have but I'm trying to find answers else where because she is stressed and I don't want to stress her out because she is my soul mate and when she gets stressed it hurts me inside and I don't like to see her worry about me. I'm trying to hide my pain but it's hard and I want her to be at ease.
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Hi Philip I am so sorry for your pain. There are others here way more expert than me but searching the info sites I use, low vitamin D was suggested as a possible source for bone pain. Can you have your level tested? Also an anti inflammatory diet, avoiding sugars, dairy, gluten was recommended. A good anti inflammatory supplement to take is Curcumin. you need to take a high amount, at least initially to make a difference. If you search for Curcumin here you will find discussions about it.
My husband has CML, and I bet your wife is just like me, worried about you, wanting to help and look after you, so don’t at all feel you are being a burden to her by sharing your pain. It’s much better to do that than bottle it up. That is what a marriage is all about.
i really hope the new TKI will help you. my husband is on Sprycel and we are just trying to reduce his dosage to avoid some side effects. I have come across many patients who have found their first TKI has not worked or have had too many side effects but by changing dosage or TKI, can get there in the end.
You sound pretty young and it does seem that the younger you are, the tougher the time you may have initially.
Take care of yourself and good luck with the new TKI.
My heart goes out to you. It sounds like you are having a really tough time.
When I was first diagnosed and was put on imatinib I had terrible bone pain. A combination of a dull ache all the time, and then frequent shooting, almost electric pains mainly in my legs but also in my arms. It was awful and no amount of pain killers, heat or cold helped. I don't know if this is anything like the pain you are having but as soon as we discontinued imatinib the pain went away in two weeks. So maybe there's some hope that the change to nilotinib might improve things?
I am on Dasatinib and have been since I was diagnosed in October 17. The bone pain is significant but I've started taking Curcumin/Tumeric and also magnesium. I also have a Bowen massage/treatment every month. You can find your nearest Bowen practitioner online. All three things have helped me with the pain. I used to wake up 4 or 5 times a night with pain, but now I am sleeping through much more. I also walk every day for at least an hour.
I would try to cut down on alcohol as much as you can. That being said, I still have a glass of wine once a week/fortnight.
I do hope that a change in TKI will help you. If it doesn't, I would urge you to put pressure on your consultant. You don't want pain killers as such, but you do want a TKI that works better for you than what you are feeling right now.
You can't change having CML (god knows we would all like to!!) but you can change your treatment to one that works for you, not against you.
There is another side to the CML. It’s called depression.
Your body is going through chemical changes, your
mind is reminding yourself that you are sick and the side
affects are amplified with depression. It happened to me.
I went through some dark times. I still have this but I try to separate my depression
from the actual physical feelings. It’s not easy at first but with
perspective it gets controllable. I am back to work and doing fine.
I’m not saying you don’t have side effects. I’m saying you also have depression.
The fact that you are still able to work means you can still be a provider.
Your energy level will not be the same. Your body is fighting cancer.
Your mind is sad. This is the other side of CML.
You got a lot of life left in you. Your are on a journey.
Things will never be the same as before. But you can learn. learn about
side affect work arounds, learn how to measure your energy levels,
learn about supplements and nutrition, You have not been defeated.
You did take a hit and now is the time to use your skills as a body builder
to over come your blues.
Regarding the rash from Tasigna, it depends on what kind it is - Tasigna can do different things to the skin. For dryness, a skin moisturizer works well; for folliculitis, your dermatologist can prescribe various different washes and topical antibiotics that help; for petechia, there isn't really a whole lot you can do because the TKI is the underlying cause.
What is your PCR trend? Perhaps you could start talking to you doc about dose reduction if you are at or below MMR. I started on 600 MG/day of Tasigna but am now on 150 mg/day due to some pretty nasty side effects. I have been bouncing between undetected and <.003% for almost a year, so 600 mg/day was way too much. My side effects are much more tolerable now and some have gone away.
Good luck - try to stay positive by focusing on the good things in your life. It's hard some days, but you have a disease that is controllable and with time and proper dose titration, you can reach a "new normal" life state that isn't all that different from your pre-CML life state.
Thank you so much. Yes my wife is my best friend and my support system. She read all the info on Tasigna and went right out bought me a electric shaver and spinach and green and blue smoothie drinks that are healthy and she is going to start cooking plain food just for me so I can get healthy. I bought Zyrtec for the rash if I get it and Eucerin lotion for my skin so I'm ready to fight and love this forum because everyone is so nice and that's what I need right now.
Thank you I have some and will start on it again. It didn't work for the Gleevec but may work for the Tasigna I just started. I'm also ordering Queesy Drops the pharmacy gave me a sample of some and they worked because my stomach was real bad so I used 2 of the Queesy Drop candy's and I didn't vomit so that was a plus.
I feel you totally. I used to be a bodybuilder and was 240lbs and 6% bodyfat so now I'm 230lbs and about 18% bodyfat and half my muscle went away so I am depressed and thank you for caring and replying. I can handle that part because I've been depressed before and I'm just ignoring it and working as much as I can and starting on the Tasigna is hopefully going to take the bone pain away so I can at least workout 2-3 times a week soon.
Well been on Tasigna 3 days and I'm finally getting used to it as long as I drink a ton of water and eat a few Queesy Drops candy right after I take 300mg of Tasigna . First dose was horrible it knocked me out sleeping for like 5 hours. I woke up drenched in a pool of sweat but every dose after has been getting better. I'm just praying the rash and itchyness don't come for me because it seems like the bone pain is slowly getting less over the last 3 days but I'll see this week when I go back to work Monday. No time off for me my work is busy and I'm backed up for a few months right now.
when i was diagnosed with cml the doctors tried the gleevec. the test results eas not that good after, so they change it to sprycel. when i was taking gleevec i couldnt walk properly. i couldnt even brush and comb my hair properly coz my elbow joints hurts. im so week back then and so depressed.. Hold on there man👌 like u , i have some question aswell, like i wanted to go back to the gyn but i dont know if supplements (whey) is ok . i ve been dealing with this since 2015.. i hope u l get back and shape soon 👍
For what it's worth, I spoke to my haematologist about whey protein after workouts and she says it is no problem. I would stick away from more "exotic" workout supplements without speaking to your doctor though.
Like you I enjoy my body buliding and I also did struggle a lot in the first 12 months with actualy stopping also for a while but I now find that I am able to train again in the gym although not as intense as before my CML straretd
I also had a practical nephrectomy just over 4 years ago not related at all to my CML
I do get some abdo strains if I am not careful in the gym so I now find that rather than doing heavy weights I do lighter weights but more reps and I seem to cope ok with this
I hope you can get back to going to the gym again it helps me focus on my training that I so enjoy
thank u for sharing your case. i m glad to hear that some doctors allowed whey. i know its not that important to use whey while working out. but it is the best way to get protein after a workout or a run. im taking vit D now. recently i was not feeling well, so i visited my doctor and found out my Vit D was very low. i did asked my doctor aswell about whey and he told me that whey protein is not gonna interfere with my medication(sprycel). but he told me aswell that i just should eat well😊 im not running yet so i still havnt bought any protein powder. stay fit , man!👌
Before CML I worked out as well. Not like you i am sure but I wanted a flat tummy and a toned body which at my age I am happy with. Post CML I have worked out very little but eat healthy which controls weight. I am no longer "toned" and I want that back. I have accepted the fact this is the "New me". I do not like it.....I hate it but it is my new life. I tried to do a bike ride with a outdoor group here in Houston I joined and lasted about 1 mile. It was humiliating. I am not use to failing on things I start. Do great on walks though. Going to slowly start working out again. Just maybe not to the same extent as before CML. Not a vain person by any means but I loved how I felt after a good workout mentally and physically. I cannot look back it only upsets me...I look forward to goals I believe I can reach and go further from that point. Compared to most folk's stories on here.....I count myself very lucky indeed. Good luck with your new meds!
I have tried everything protein shakes, BCAA's , Aminos , Vitamins , Minerals , anti inflammatory herbs , CBD and even smoking weed. I can't smoke weed it makes me weird and paranoid . I went from 4 -10/325 Percocet down to 1/2 a pill in morning and half a pill at night and some of the joint pain went away because I'm taking Naprosyn twice a day . Can't take 500mg twice a day like the Pain Management doctor wants me too because when I take it at night a hour after my Gleevec I feel really weird like a space cadet . So i 250mg in morning and 250mg around 3pm and it works a little but the bone pain from the Gleevec drives me crazy so I'm going to ask to try Sprycel and see if that makes any difference . I hope so because I would just like to workout enough to be lean and fit . I don't need to be 250lbs at 8% bodyfat anymore . I'd settle for 210lbs at 6-8% bodyfat . I feel bad because my wife is real hot and tan and this isn't a insecure thing at all because she loves me no matter what . I just don't want her to feel bad for working out . Plus I dont want her to have to have sex with a chubby guy . I want her to be happy too and she never complains at all but I feel guilty that I dont look good for her even though she tells me to shut up about it and that it doesnt matter to her . I seen recent pictures of us together and it matters to me because she deserves better .
So I'm going to ask my Cancer Doc to switch me to Sprycel plus I'm seeing a doctor to find out why my muscles hurt so bad and why they are so weak and cramp and why when I do try and workout they hurt real bad for 7-8 days. I know what sore muscles are supposed to feel like after a workout and this isnt normal at all. Im so sore I can barely move for 3 days . I just want to workout real light just to be lean because I'm still big for not working out but can't do alot of cardio because my legs burn real bad after .
I felt better when I was taking the pain pills but know they are no good for me and thats why I reduced the amount I'm taking . If my back and ribs and legs didnt hurt so much Id get off them fully . I still work construction so right now I'm stuck taking 1/2 pill twice a day just so I can manage at work . I work 7 hours straight and I still swing the hammer and climb up and down ladders all day . I can't quit either because I pay 75% of the bills so I need to find out whats wrong so I can work better and workout a little . I pray the doctors find out something. The MRI came out and nothing is wrong with my spine except I have spurs forming on my spine from my ass to my neck . So we shall see after all the tests are done. He is testing me for everything he can think of .
They also say opioids are bad and I agree but no one has an answer for why my muscles hurt so bad and how to get rid of the bone pain and my ribs hurt and lower back and mt legs are very weak . They say oh your blood looks good at the cancer center and then they pushed me off to a regular doctor to figure out whats wrong so now I'm back to getting MRi's and xrays and tons of blood tests and a colonoscopy just so they can say we don't know. When we all know its the Gleevec causing most of the pain . I should have stayed on the opioids because at least i didnt feel 60% of the pain. Now I feel 100% of the pain .
Have you talked to your doc about switching TKI's. Sprycel would be my first choice because Tasigna is more like Gleevec than Sprycel, so Tasigna might cause the same pain. Also, if you have reached MMR, you should also discuss dose reduction with your doc. I did my first reduction only 6 months into treatment because of a myriad of unusual side effects from Tasigna. I then did 2 more dose reductions in the next 6 months and my PCR stayed low and side effects improved significantly.