16 replies to this topic

[FLchef79]

Hi Everyone,

    My name is Mark a 32 year old chef recently diagnosed with CML. I started treatment with Gleevec 400mg, I would take the pill at night after dinner. After 4 days, I started to feel severe pain throughout my body but the pain seemed more concentrated in my legs and joints.  Went to see Dr at Cleveland Clinic and was told to take Advil or Tylenol only once a day. Needless to say, that did nothing for the pain. I went to the ER where they gave me Tramadol which did nothing and finally morphine. Finally had relief! My Dr told me to discontinue the use of Gleevec until my sched appt on 5/18(Friday) where he either wants to start me again on Gleevec or possibly switch to a different medication...What does anyone think about this? Does anyone here take narcotic pain medication or muscle relaxers to ease these side effects of pain? My doctor makes me feel crazy... as if it is almost impossible to be in such pain with the Gleevec. I need some advice, please! Thank you.

[0vercast]

That sounds really rough.  After about 4-6 days of treatment with Gleevec and Hydroxyurea, I started to experience quite a few shooting pains and soreness in bones and muscles of my legs, hips, and lower back.  I felt pretty beat up, like I used to feel after playing football.  The docs told me it was rather normal for people in the earliest stages of many cancer treatments as the body is fighting the cancer and adjusting to the meds at the same time.  Most of the aches and pains I experienced during the first month on Gleevec were more along the lines of severe fatigue instead of actual sharp pain, although there was a few short periods of sharp, shooting pains.  They went away pretty quickly after about that first month, along with almost all of the side effects I experienced, when I began to relax and loosen up a little more.

I wouldn't recommend any sort of regimen that has you taking opiate painkillers for any length of time.  Those things are too strong and addictive, and you might end up worse off than you are now.

[Happycat]

Mine took about 2 wks to show up, but when they did it was with a vengeance. We were actually in the car taking a 10 hr drive (which became 13 hrs due to some really wild weather), when the pain started in my elbows. I had a miserable week on "vacation".  I was not allowed to take ibuprofen (long story), Tylenol did (still does) nothing for me, and while I had a few Vicodin I brought with me, they were leftovers from a dental

procedure and not enough for a week. The pain quickly spread from my joints to my bones. It got pretty uncomfortable. My lower arms and thighs hurt so bad, I have no good way to describe it.

I did what I could, which was to take some hot showers and slather Icy Hot on myself. That helped some, it's basically an aspirin derivative that can be absorbed thru the skin.

When I went to see my doctor after we got back, he chided me for not calling him (he "knows people" in VA). He also said there was no need to "be a hero" and suffer with pain. He said the pain was due to inflammation in my bones and joints, and prescribed Vicodin and prednisone. The prednisone got the inflammation down the best, and I felt much better in a few days.

I would not give up on gleevec until I had tried other ways to control the pain. Some people, with higher initial WBC counts, get allopurinol, which helps sweep the uric acid byproducts out of the body. Uric acid can collect in the bones and cause pain (gout). Uric acid is usually high in CML, I think it's an indication of high cell turnover. I did not get it prescribed to me, because my count was only 43k at diagnosis. I often wonder if it had been prescribed, would I have avoided much of the pain.

HTH,

Traci

[JP1102]

You may laugh, shake your finger, or tsk tsk me, but I've "heard" that cannabis works very well.

Peace

[FLchef79]

Not for me:( I smoke pot (GREAT pot at that) and it doesn't help... thx anyway !!

[dennyzb]

I have had terrible bone pain in my shins and tailbone. My doc gave me vicodin and it works well when needed.

[William1403989302]

Bone pain is very rare with Gleevec.  Generally about 10% of patients will experience bone pain.  You might be in a little worse position due to your occupation.  Unfortunately the other TKIs used to treat CML have about the same percentage.

[Trey]

I have found that the reported percentages of side effects do not necessarily match reality.  The Onc must report the side effect for it to get into the database, and most Oncs don't take time to report them (and some even dismiss many side effects as unrelated). 

[FLchef79]

William, I am in the 10%! I actually ended up in the ER because the bone pain made it unbearable to WALK. This was only after 7 days of Gleevec...so that's why my onc made the switch...Even though my occupation is a chef , I am a corporate chef so I am not on my feet all day..Thank you for your time and advice!

[FLchef79]

Trey, this is so true! Will make it a point to have my Onc report my side effects

[FLchef79]

<~~~currently on Sprycel..................Anyone on Sprycel? Side effects?

[Pin]

Mark - I had big time pain in my joints and leg bones early on in treatment with Gleevec. It mostly went away pretty early on though - I can't remember when, maybe a month after starting? I hope it gets better for you soon too. Now I just get muscle cramps.

Totally agree with Trey - I reckon most people on this forum (not the most random of samples, but still) have experienced some bone pain. As well as this, I have a good proportion of the listed side effects and then another list just as long that are not even listed as potential side effects at all.

I think it's more likely that they some are under-reported than me being that unlucky!

[mjkern]

My 18 year old daughter has CML, and is now doing well after 4.5 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.lgmedsupp...slg3000kit.html

; http://en.wikipedia....rve_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.  If you are experiencing these

symptoms, don't get discouraged, they will pass.  Gleevec is indeed a

miracle drug.

[lehrerin]

LISTEN to MJKERN......her suggestions have kept us on Gleevec with very minimal side effects!   Wish all the doctors would hand out this list to all patients starting on Gleevec.  It enables us to stay on high-dose Gleevec.    So our med schedule is Gleevec 400 mg with breakfast, one Posture D, one Multivitamin, and one Zyrtec with lunch,  Gleevec 400 mg with dinner......Motrin as needed.

Thanks MJKERN for all the wonderful suggestions that have made life bearable, and even fun again

[GerryL]

Just on the Ibuprofen, there now appears to be an interaction between it and Gleevec.

http://community.lls...tart=0&tstart=0

[Happycat]

Gerry,

I asked my hematologist about the ibuprofen. He had a valid point. Until he sees more studies pointing to the same problem, he would not tell patients to avoid ibuprofen, especially if they are doing well on gleevec.  One study comes to one conclusion, while another study finds something else to invalidate or at least bring into doubt the first study.

So for me, I will use the ibuprofen while on gleevec, but I try to limit it. I also seek out alternatives. Icy Hot is one of my favorites for muscle aches.

Traci

[GerryL]

Hi Traci,

I still take ibuprofen occasionally - perhaps it is only an issue if you are needing constant pain relief. I also take paracetamol when I need to, my Hematologist told me it was fine as my liver function was excellent.