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Hi everyone
First of all I'd like to apologize for my English which is not my mother tongue. I'm Belgian but as I couldn't find any interesting discussions about CML in French I tried to find some in English and here I am ! I hope this is the right place to write.
Here is my story. I'm 25 and CML was diagnosed to me 3 months ago. Even if this is not something joyful to learn I have to admit that it was somehow easier to live than I first had thought. I'm on Gleevec (Glivec here in Europe) for 3 months now and blood tests are really good. My white blood cells number decreased from 250.000 to 5.000 in some weeks. Moreover I had no disabling side effects.
Unfortunately I began to feel bone pain 4 days ago, mainly around my shoulders. I first thought that it was because of an awkward position during the night but, as the pain was still there the day after, it seemed obvious to me that it might be a side effect of Gleevec. That's why I'd like to have some feedback from people who ever felt bone pain because of Gleevec. How long did it last ? Did it ever stopped ? Did you find any way to reduce the pain ?
Of course I'll talk about that pain to my oncologist but I believe that pain is hard to understand and that comments from people who have felt this kind of pain might be helpful.
Thanks for reading 
PS : feel free to correct mistakes I've probably written it will help me to improve my written English and this disease won't be completely useless to me 
hey #9
ive been on gleevec for about 2-3 weeks now myself. i started feeling bone pain about 3-4 days ago. its been a hard because its just like a dull ache. it drives me nuts. i dont like taking pain meds so i just deal with it. ive found that hot baths work really well for soothing the pain. from what i understand the pain should start to subside. im about in the same spot as you, so it will be interesting to see others responses. welcome to the board, even though none of us want to be here.
dan
Welcome NumberNine
Your English is outstanding, only wish I was as fluent as you in a foreign language
I can't be much help in the shoulder pain (bone pain) category as due to a neck injury
I have frequent neck, back, shoulder pain, as a matter of course.
what I have noticed that is different for me are short bursts of exploding joint pain, mainly in
my feet. it's strange, and thank God, the pain only lasts for seconds, as they become
very intense very quickly.
can you be more definitive as to what your shoulder pain consists of..are muscles involved??
Again, not to worry about your English; it's better than many American's.
Buzz
My first post here.
You can add me to the list of new Gleevec takers.
I was diagnosed with CEL (Chronic Eosinophilic Leukemia) 4 weeks ago and I am now about 3-4 weeks into my medication.
I have been feeling the same dull ache in my bones/mucles (majority of it in my legs).
I will go several days between needing to take Tylenol to help alleviate the pain.
As of right now it's mostly an annoyance and from what I am hearing it should subside.
Other than that I am really not feeling any other side effects of the medication that were discussed.
Welcome to the forum ETauntonMA and Janine
Thanks for posting; every single bit of information gathered,
helps those who follow, to better understand this disease.
Hoping your leg and knee pain is short-lived and Gleevec
side effects remain minimal for both of you.
Buzz
Two things I can say about gleevec and bone pain is that...
1. the pain usually subsides as the Gleevec has been in your system for a while and gets control of all those bad leukemic cells so don't worry too much about that, at least long term
and
2. make sure that you avoid taking Tylenol in large doses (preferably not at all) as it can have negative effects on you liver while taking Gleevec at the same time. I have taken Advil (ibuprofen) for pain with no noticable problems, but make sure that your dr. is okay with that, just to be safe.
You can read more about Tylenol and Gleevec interactions on the Novartis website here http://www.gleevec.com/safety-information.jsp
That's strange. The onc I see told me to takeTylenol for pain. She says to stay away from ibuprofin. Nevertheless, I tough it out. Want to save my liver for as long as I can.
Hi,
not sure if it is a good idea to take tylenol. Usually it is not recommended since both Tylenol and Gleevec tax the liver. My doctor has told me that ibuprophen is preferred.
Hi,
I was diagnosed in January and started taking Gleevac on 13 February. I haven't had many side effects, but I have had bone pain. Mine has been mostly in my legs, especially my knees. I found that hot baths help. But the good new is that a lot of it has subsided, so maybe that will be the case for you as well. Bonne chance, Janine
Hi-
I also experienced bone pain that you are going through within the first few months of taking Gleevec. It seems like it is a normal side effect. For me, I occasionally took a OTC pain reliever (NSAID) that helped for those bad days. Luckily, after almost 1 year of treatment on Gleevec I no longer have any bone pain. It gradually decreased and then went away all together in the first 6 months or so-hopefully this will be the case for you too. I also found that light exercise, even walking, helped a little and now exercise3 days a week. Glad you found this board, it proved to be very helpful and reassuring to me over the last year. You are not alone. Best of luck with your treatment 
Michelle
The initial bone pain will normally go away within several months. There is also a longer term bone pain some have due to how the drugs can affect bone reformulation and overall body usage of calcium, phosphorous, and magnesium. Whether these are the same mechanisms at work in both short and longer term pain is unknown.
http://bloodjournal.hematologylibrary.org/content/115/4/766.full
Regarding Tylenol, Novartis (maker of Gleevec) says the following:
"Do not take any other medications without talking to your doctor or pharmacist first, including over-the-counter medications such as Tylenol® (acetaminophen); herbal products (St. John's Wort, hypericum perforatum); Coumadin® (warfarin sodium); rifampin; erythromycin; and Dilantin® (phenytoin). Taking these with GLEEVEC may affect how they work, or affect how GLEEVEC works. "
I would not take Tylenol with Gleevec. I would take Ibuprofin or Naproxen.
Trey
What has happened to Anjana. I wondered if she dropped out because of the switch. I miss not hearing from her. About bone pain I was dx in 06 and never had any pain till lately and it has hit my hip, so I ignored it and it went away in about a month.
Rush Limbaugh had a Gleevec patient on his program last Friday and he said he considered G. a cure. Rush was supporting the Lymphpoma @ Leukemia Society. I wanted to call in also and really didn't know what to say so I didn't.
Blessings to Everyone
Is there any particular reason why you would choose ibuprofin over acetaminophen? Ibuprofin tends to upset my stomach a little bit, so I was told by my Onc to go with Tylenol over Advil. Also, I was just prescribed Percocet (acetaminophen and oxycodone) for surgical pain.
My bone pain comes and goes. I have been on gleevec for 3 months now and generally tolerate it quite well. I may go days with no pain and then it pops up and disappears in a while. For me, the side effects have gotten better with time other than the fluid retention around my eyes but that too can fluctuate from day to day. L
I have been on gleevec almost a year now. I have had bone pain since the beginning. I experienced it in my rib cage. I talked with my doctor and he felt that it would get better with treatment, It has decreased but is still there. I noticed with some of the reply people talked about shooting pain, with gleevec there is the cramping that occurs and I have that also but it is different then the bone pain. I too thought the bone pain was from a bad mattress but then when I got a new one it continued. I do take ibuprofen but you have to be careful to take the lowest possible dose that will relieve the pain. I also have found it helpful to exercise and stretch. However it does seem to be an ongoing thing.
My 16 year old daughter has CML, and is now doing well after 2 years on 400 mg Gleevec, but the first couple months of treatment she experienced severe bone/joint pain, muscle spasms and fever up to 103 degrees. We found that the most effective approach was a combination of things: Daily oral calcium/magnesium supplements, such as Posture D, are essential because Gleevec depletes the body's stores of these minerals, which can then lead to muscle spasms. Ibuprofen also helps significantly. Surprisingly, non-sedating anti-histamines such as Zyrtec (10 mg) are very helpful too as they counteract the high levels of histamine (which can mediate pain) released by CML cells. Hot pads and stimulation with a TENS apparatus worked wonders (transcutaneous electrical nerve stimulation; http://www.lgmedsupply.com/tenslg3000kit.html ; http://en.wikipedia.org/wiki/Transcutaneous_electrical_nerve_stimulation); The small TENS unit can be worn on a belt and even taken to summer camp. Flexeril (10 mg), a muscle relaxant, also was probably helpful to relieve severe muscle spasms. At the peak of the problem during an ER visit, IV calcium and Flexeril gave huge relief, whereas morphine and Valium did nothing. Good luck. Don't get discouraged, these symptoms will pass.
I have been in pain for weeks on gleevec for two months. I am now at a pass as I can not get around. it is my hips and legs. It is so bad I scream and cry and can not walk and nothing is helping. I am going to the transplant place next week to start the process for a possible transplant. but as that is a long process I do not know how long I can bear the pain.
Hi: I am so sorry you are suffering so bad with the bone pain. You said you have been on the Gleevec for weeks now. I do not know if you will get a transplant, or if the TKI will work for you. Just know that the pain your experiencing is something we all went through when we started on the drug. IT is trying to kill off those cancer cells in your body, and it does get better with time.
I do not know how high your counts were at diagnosis, or what stage your in right now. Sometimes you do not have to get a Transplant depending on how you do with the TKI drug. When you feel up to it, please share a bit more so we can give you some advice and support.
I believe you were diagnosed in January by your posting name. What treatment were you doing before the Gleevec?
I am on Gleevec for 11 years, so I hope that will encourage you some to know CML is treatable.
My other suggestion is to always be sure your Oncologist is experienced in the treatment of CML, and I always suggest 2nd or 3rd opinions.
Number9 and all
I have been on Gleevecs just about three weeks and have noticed bone pain especially a very sharp pain in my back as well as muscle cramps. Lets all get through this together.
Johnc
I had bone pain as well when I started Gleevec 400mg - mainly in my legs and some pain up/down my back. What a miserable sensation ... I never felt bone pain before in my life before CML and treatment, and it was painful enough to wake me up in the middle of the night. I did find that Ibuprofen helped quite a bit while I went through that adjustment period. It does go away though ... seems like many of us went through the same thing.
Were you diagnosed in Chronic Phase? If so, then you shouldn't have to think about transplant right now ... you need to see if you are responding to Gleevec first, or try Tasigna or Sprycel - odds are that one of those therapies will be right for you and will mimimize the side effects.
Keep us posted, and I hope you feel better!
The bone pain is often temporary when beginning TKI therapy. I would not go to transplant based on that alone, since the pain will likely diminish with time. Transplant has its own set of problems. No idea what phase you are in, etc.
What are you doing to manage the pain? Mine improved with use of prednisone to control inflammation. I couldn't use ibuprofen (unrelated issue), so had to stick to Vicodin for pain.
Pls let us know what you are currently doing for the pain. Perhaps we can help with some suggestions or discussions to have with your onc.
Traci
1-12,
Pain as severe as yours may call for a drug change. No oncologist, even a transplant specialist worth his/her salt, would recommend a transplant without first trying all the TKIs. There are pain/side effects to be had from transplant that may far exceed what you are experiencing now and there is no guarantee for a cure. In fact, the protocol now is to take Gleevec (or one of the other TKIs) after transplant, too. You might as well try another right now, I would recommend Sprycel since it's mechanism is so different from Gleevec.
Good luck!
Pat
"That's why I'd like to have some feedback from people who ever felt bone pain because of Gleevec. How long did it last ? Did it ever stopped ? Did you find any way to reduce the pain ?"
I experienced some cold, shooting pains after starting on Gleevec. They were very random and sporadic, rarely hurting for more than a few seconds or occurring in the same place more than once or twice. I took Tylenol a few times, and held a heating pad on my hip at the site of the bone marrow biopsy once or twice, where it hurt a few times. It didn't really have any effect, but after the first month of Gleevec, I never had any more problems with pains that were unusual.
You can try adding a supplement for Magnesium, Calcium and Vitamin D into your diet. Gleevec can stop the absorption of these and this can cause bone pain. Just make sure you take the supplement at least 3 hours away from the Gleevec as the calcium can interact with the Gleevec.
Are there any scientific studies showing that Gleevec retards the absorption of Calcium, Magnesium and Vit. D? Thanks, Frank
