30 replies to this topic

[LivingWellWithCML]

Hi everyone,

I'm about 2 weeks into Gleevec treatment and everything's been smooth sailing - no real side effects, running almost daily, etc.  Easter Sunday was super busy, though, and I did a lot of standing at various get-togethers and such (talking around the kitchen island - my favorite place to socialize!).  So, near the end of the day my legs were actually starting to feel pretty tired, so I started sitting down a bit toward the evening and I found that the quad-portion of my legs were aching a bit.  I went to sleep and woke up around 2am with a pretty dull ache in my legs ... I simply could not get comfortable at all.  My wife convinced me to take an Ibuprofen (after researching to make sure it wouldn't mess up the Gleevec), and the pain did go away and I was able to get back to sleep.

However, this evening I'm starting to get the quad-level ache in my legs again ... and that's after sitting a good portion of the day for my job.  I've read some of the past content on this forum to try and draw a conclusion, but I'm not quite sure what to make of it.  Anyway, it all seemed to start on Easter Sunday after standing for quite awhile throughout the day (easily several 1+ hour of non-stop standing and talking with folks, playing some light basketball in between, etc.).  And I'm not feeling this anywhere else -- only the quad portion of my legs.

Has anyone else felt this sensation in early treatment?  Is this the Gleevec working some magic down inside the marrow and wreaking early havoc to CML?  Perhaps I put my legs through too much strain by standing a lot on Sunday?

Just curious - anyone else dealt with this?

Thanks for your feedback -

Dan

[Trey]

Standard.  Just side effects.  The quads get it the worst.  Should straighten out over a few months.

[LivingWellWithCML]

Ok, thanks Trey - I did yet more digging and sure enough, there is a consistent theme of bone pain (in different areas of the body, which is interesting).  Sounds like it'll subside, so I will tough it out and keep on running a few times per week.

Is there any good explanation of why it happens?  I assume that the Gleevec is now working its way into the marrow itself and wreaking havoc on the initial higher-concentration of CML cells?

This is the first time I've ever felt a sensation like it in my life ... but hey, it's reminder that I'm batting cancer, not the common cold.

[mcfowler33]

Hey Dan,

Im about in the same position right now.  I was diagnosed March 9th and had no pain for the first several weeks.  The last three weeks though - it is a completely different story.  I have aching and occasional sharp pains throughout my arms and legs and it pretty much doesn't subside.  Going to the doc on Thursday - hoping to get some better answers there, but I have pretty much came to the conclusion after reading on here that its standard. 

Ibuprofen  does take the pain away for about 12-16 hours, but Ive been worried about taking it and thinning my blood even more.  Don't know if that is a valid concern or not.  Tylenol does pretty much nothing to stop the pain, but no surprise there as it has never really worked for me. 

Ive pretty much decided that I dont care how bad it hurts - its not going to stop me from keeping active.  Going dirt biking this weekend!  Hope everything gets better for you and me for that matter!  Maybe my doc will have something good to say on Thursday?!?

Marc

[lala]

hi, guys!  once i started taking my medicine in 2 parts---actually: 2 gleevec 100's after lunch and 2 more after dinner, I noticed a big change.....the deep morning fatigue was much better and the aches were gone...also, drink water---it helps!  i used to wake up many times during the night with bone aches---no more!  maybe your docs will let you try these smaller pills---they sure are easier on my stomach.

~lala

[smbutters]

My husband, 34, went throught the same pain in his legs and also in his arms.  He has been on 400mg Gleevec for six months now and I haven't heard him mention it lately so maybe it has gotten better.  Good luck - Steph

[Happycat]

I got that out of my neighbor last night, a doctor who teaches med students somewhere in Boston.  Anyway, I asked her what was going on with all the pain I've been feeling.  I figured it was due to the death of the WBC's, and she said that basically, when they die and start to break apart, they release all kinds of chemicals that signal inflammatory processes in the body.  Inflammatory processes then lead to pain (by releasing other chemicals like prostaglandins).  It's a cascade of signalling events.

If you can take it, ibuprofen is a great help for inflammation.  I, unfortunately, have been banned from ibuprofen, and can't take anything else for inflammation since I'm allergic to aspirin.  So I'll be hitting my doctor up for some opiates!  They won't do a thing for the inflammation, but will at least hit the pain receptors.

I've had pain in my arms and legs for the last 10 days now.  It at least is kind enough to hit me in one area at a time, so I'm not aching all over. It's a little easier to take knowing it's a good thing, resulting from the death of the WBC's.

HTH,

Traci

[Sneezy12]

See a Bd. Certified Allergist for Aspirin Desensitization. Frank

[LivingWellWithCML]

This is really helpful information - appreciate you all jumping in.  I imagine that it'll be up and down ... last night I slept pretty well and my legs feel much better this morning - and I managed to avoid taking an Ibuprofen (for now, anyway).  I'm going to take one more day off from running and get back into the routine on Wednesday and see how it goes.

Thanks everyone -

Dan

[Trey]

I wish I could say that the pain is the feeling of leukemic cells dying in agony, but it isn't.  It is a side effect of TKI drugs since they do not perfectly target only leukemic cells.  TKI drugs target some secondary enzymes which causes us side effects, and likely the deep muscle pain and bone pain.

[CallMeLucky]

Any bone pain I had, seemed to let up after a few months.  Muscle pain in the legs is a recurring issue.  It tends to cycle every few weeks.  Exercising helps.  I have found like you, that when I push too hard one day it can set it off and I pay for it a little the next couple of days.  Push through as much as you can, rest if you need to.  I find massaging the muscle helps.  Use Ibuprofen as needed, but stay away from Tylenol, it is harder on the liver and generally not considered a good idea with Gleevec.

Hope it feels better soon.

[LivingWellWithCML]

Thanks guys.  I spoke to Dr. Khoury's nurse and she said that Ibuprofen was totally fine to use with the Gleevec - that's very good to know, but I'll only pop one when absolutely needed.

Appreciate all of the great input you all!

Dan

[eithne01]

Trey,I,m bringing that up with my onc on my next appt.Unfortunatley the bone pain and the cramps

have never let up for me in the whole 18months.I bring it up everytime and he says it is bone marrow working

at rejuvenation.I accept all he saysbut surely at MMr the bone marrow is not having to work so hard?

[Happycat]

Trey,

You party-poop!  I prefer my fantasy of leukemic cells dying in agony.  Much easier to take the pain that way.  Gotta go, got the dh to get me a Dairy Queen and he just returned.  Hey,, if I can't have ibuprofen, I can at least pig out!

Traci

[Marnie]

All right, Traci. . .so fill me in, since I'm obviously clueless. . .what exactly is a "dh". . .designated husband??  designated hunk??? hot diggity dog???  damned good-looking he-man???

[lala]

designated helper....that is what they called them in my daughter's child birth classes...... because you can't assume it's a husband/boyfriend/partner... it could be a wife/girlfriend or maybe a mother or friend... you get the idea... it was the inclusive term... it IS the year 2011...

-Lala

[GerryL]

I thought it might have been darling husband, but now realise I may be politically incorrect following lala's explanation.

[Happycat]

DH is shorthand for dear husband, dw dear wife, dd dear daughter, ds dear son.  Although I'm sure my dh would prefer your definition of designated hunk!

Traci

[Pin]

Hi all,

I've been looking for some information about the timing of taking the Gleevec, and the subsequent timing of the muscle/bone pain.

I take my tablets in the morning, and I find that the pain is least when I wake up (I'm assuming because there is less medication in my system?), but gradually throughout the day the aching gets worse, and is at its worst point at night.

What I'm wondering is - does the timing of taking the medication affect when you get the pain?

I tend to exercise in the afternoons and evenings (football training, which unfortunately I can't change the time of) but I'm wondering if changing my medicine to night time would be better. The unfortunate problem with this is, I have dinner at very different times depending on the day (varies from 6:30-9:30pm), and I wouldn't want to compromise the effect of the medication by taking it at different times...

Does anyone have any ideas about this that they could share with me?

Thanks in advance

P.

[jjg]

I do the majority of my exercise in the morning before glivec. I could not rely on being able to exercise in the afternoon or evening not because of muscle pain / cramps but because of fatigue and sometimes nausea. I have thought of swapping to evening but the glivec messes with my sleep. Anyway I'm a morning exerciser and I feel so normal i.e. good, in the mornings pre G. Glivec has a half life of ~18hr so if you are an hour or two off your levels are not going to change much. On the weekends if I sleep in and then go for a long ride my breakfast / glivec might not happen until almost lunchtime. I don't stress about that - maybe I should? but I can't be stressing everything. I've noticed two things about taking my glivec late. Firstly if I'm on a long ride I might have only had a piece of toast since dinner and after 2/3 hours I should be running very low on energy. But I also have the added advantage that I'm in the low glivec zone and I've always been a bit of a camel so I often get stronger towards the end of a long ride - hubby who is normally way stronger than me does not appreciate this . Once I've taken the G all my camel properties disappear for the rest of the day and I have to eat every couple of hours to avoid running out of energy. Secondly for me having a late G and doing lots of exercise before tends to lead to a bad G - more nausea and more fatigue.

I'd be interested to know how you go swapping to night G with both muscle/bone pain and energy levels. My guess is that fatigue would still build up a little in the day even if you glivec levels are dropping. So energy wise night G would lead to a more even energy level but that might not be as good as you feel after a good nights sleep and low G levels. If I had to do evening exercise I would definitely experiment.