15 replies to this topic

[LivingWellWithCML]

Hi all,

So every few months over the first year of treatment, I've been getting pain/inflammation in my lower right abdomen that has been quite an irritant.  I started Gleevec 400mg in mid-April and I had my first flare-up in early June, then early October, very briefly in early January, and at the end of March (now).  I had a couple of urologists check me out last year and they seem to think it's prostatitis, but I'm just not quite sure - it just feels like a "catch all" diagnosis.  They prescribed antibiotics for the first two flare-ups (Bactrim DS and Doxacycline) that I took for about 10 days each time, and eventually the pain/swelling went away.  However, the 2nd two flare-ups haven't been as bad and I haven't touched the antibotics at all.  I did take 600mg Ibuprofen early yesterday (after running a fast 5K road race with some ankle swelling), and sure enough - the abdomen pain vanished for a good 7-8 hours ... presumably because of the Ibuprofen dose.

The other thing I've noticed is that the pain is non-existent when I wake up, and the "sensation" starts up ~ 3 hours after taking Gleevec.  So now I'm wondering if they are directly related (or maybe related to gravity??) and if I should consider moving the dose to night, or splitting the 400mg pills and taking 200mg in the morning and 200mg in the evening.  I do like to have red wine in the evenings, so the dosage split makes me nervous with 200mg Gleevec + some red wine at night.  Would welcome some thoughts here, assuming I can continue to have a little bit of red wine at night.

Does anyone else get weird inflammation "episodes" like this, and is it attributed to an effect that the TKI has on our bodies?  Perhaps it is non-bacterial prostatitis that is induced every few months from the effects of the TKI, but obviously I can't say for sure.  Have any other men out here had this problem in this specific area of the abdomen?  Admittedly, it's a terrible place to have pain/swelling and can be very distracting & discouraging for many reasons ... the Ibuprofen definitely worked, but I guess I need to assess the safety of 600mg of Ibuprofen every 24 hours for a couple of weeks while I get through one of these episodes.

Thanks for feedback regarding these episodes, thoughts on dosing changes/schedules, etc.

[CallMeLucky]

Dan,

If the pain you are describing is what I think you are describing, then I know exactly what you are talking about.  We can take offline if you want to discuss in detail, but in my case the pain in the lower abdomen is quite low and runs down to the testicle.  I have consulted with a urologist and we talked about all the possibilities.  I have actually had a similar problem since I am a teenager but not as bad as I have it now.  After doing a considerable amount of research and speaking to a few different doctors, what I have determined is that I likely have what is diagnosed as a sports hernia.  Do some reading up on sports hernia and see if it applies (note that the is no "bulge" with a sports hernia).  My feeling is that while in my case Gleevec did not cause it, I already had a weakness in the muscle wall, Gleevec's effect on muscles has aggravated the problem and made it considerably worse.  Gleevec makes my muscles hurt, it also makes them more susceptible to injury and they heal much more slowly.  In this case I had a problem from when I was younger, a few months ago I was lifting weights and I felt a pull, since then I have the pain and discomfort but because of the Gleevec it is not healing in a timely manner.  My doctor also prescribed naproxen, but it was so hard on the stomach I couldn't take more than one - it's a shame because it did make the pain go away.  I have gone to wearing an athletic supporter full time and even sleeping in tighter fitting undergarments.  The additional support helps relieve a lot of the discomfort.  I've gotten back to the point of lifting light weights and trying to work my way back up.  Most days it doesn't bother me that much, but it is definitely noticeable.

I have considered if Gleevec is more directly involved then just the muscle issue and unfortunately I don't know.  There shouldn't be a reason other than maybe poor circulation, which could also be Gleevec related.  This is one of the bigger issues that has been weighing on my mind about switching drugs, but I can't 100% associate the two together.  If I knew for certain Gleevec was causing this issue, I would change immediately, but I'm just not convinced it is a one to one correlation.

If this is along the lines of what you are experiencing and you want to discuss further, send me a private message and we can exchange phone numbers and have a conversation.

Gary

[LivingWellWithCML]

Thanks Gary!  Appreciate you sharing your experience, and I am glad that you are getting the weights going again.  I will ping you offline, but I am not sure this is a sports hernia, but it is possible.  Definitely groin pain, but not as low as you describe.  The urologist checked for a hernia the old-fashioned way (cough), and didn't seem to find anything.  For all I know, it could be non-bacterial prostitits, which would be quite a miserable situation.  It seemed to be a bit better today, but I am on 400mg daily Ibprofen starting today for a foot running injury, so that could be helping as well.  Btw, it vanishes when I go for a run ... I just need to try and keep running!  Thanks...will be in touch to compare notes...

[CallMeLucky]

Ok, FYI though, you can't check for a sports hernia via an exam.  They are practically impossible to officially diagnose, with the only 100% way being through surgery.

[Pin]

Hey Dan,

I get weird lower right abdominal pain as well. I've been getting it since about a month after I started Gleevec. I've had a whole bunch of tests done and they can't isolate what the problem is. First they thought it was kidney stones, but an ultrasound ruled this out. But they did find "free fluid" hanging out in my pelvis, which may be a possible cause. Then I had a CT scan, which seemed to also find nothing.

So, my current thoughts are that maybe it is cramping pain of unknown origin, i.e., hopefully nothing? It always occurs in a similar spot, occasionally on the left side, but mostly on the right. It feels like a stabbing pain, very sharp and painful. It comes and goes, sometimes hangs around for a few days and then disappears again.

Is this similar to what yours is like? Also, how did they find out it was inflamed? I hope it feels better soon!

Cheers,

Pin.

[LivingWellWithCML]

Wow Pin, that does sound similar!  And it started about 6 weeks after I started Gleevec ... and yes, it comes and goes.  The first episode was insanely painful (stabbing, and more pronounced/pressured when my bladder was filling up, and in that general area - ugh... !), and I was diagnosed with prostatitis, but for whatever reason, I'm not buying that.  I also had a CT scan during the first episode (May of last year) and the only thing they found was a "prominent urethra", which I guess is consistent with prostatitis.  I went on the antibiotics for a stretch and it did eventually go away, but it does keep coming back roughly every 3-4 months or so .... although not as bad.

For me, it's basically the same exact spot every time ... definitely on the right side, down low around the pelvic bone.  It's a pretty miserable place for pain, but this Ibuprofen stretch that I've started for a foot injury does seem to be helping.

[Trey]

I don't know about your specific issue, but in general abdominal pain is one of the most frequent side effects of TKI drugs, and is normally trapped gas.  I occasionally get sharp abdominal pains like I never felt before I started taking Gleevec, and it feels like a UTI infection.  I had trouble believing it was gas pain since it was so much more intense than before TKIs.  It recurs every couple months or so.  They are very sharp and extreme pains, and for me more in the middle, but very low (which is why they feel like a UTI).  I also had a colonoscopy recently just to be sure, and all is fine. 

The appendix is also located lower right abdomen, so don't ignore such pain.  Remember, not everything is related to the TKIs.

[Pin]

How frequent a side effect is an actual UTI?

I'm wondering if it is just my lowered white cell count, or if there is actually something going on related to the drug itself as I have never experienced one before I started Gleevec.

The first time I had the pain (about 6 weeks after starting Gleevec) I ended up in the emergency department and they tested me for an infection which was negative (but they did find trace red cells). I've now had 2 UTIs in the past 2 months since starting Gleevec and I think the lower abdominal pain occurs at around the same time (although I do get it at other times, but it has been worse around the times I have been diagnosed with UTIs).

Has anyone else had a similar experience?  Dan, did you work out what yours was?

This really sucks, there is nothing else I can put it down to that I am doing differently to before...

[GerryL]

Hi Pin,

Can I suggest you start taking some vitamin C and also a zinc supplement. I believe Gleevec does something to your zinc levels which for me results in an infection in my hair follicles. Since I have started taking a zinc supplement this hasn't occurred anymore.

The best option is to buy a liquid zinc supplement as this will help tell whether you continually require it - if you can taste a metallic taste when taking it, you have enough zinc in your body. If you can't taste it then you need the zinc.

[LivingWellWithCML]

I still haven't figured it out, but my latest blood draw showed ANC at about 1.5, so I am suppressed a bit on Gleevec.  I have the same theory that you do...I might just be more prone to infections "down there" as part of my new normal.  If so, then life is going to be pretty rough every few months.

I saw a very well respected urologist and am working through a 15 day stretch of antibiotics.  It seems to be getting better, but wow, it's taking awhile.  He did an exam and said my prostate was 'mildly inflammed', and he thinks a lot of the pain is associated with the swelling hitting various muscles and nerves.  But it is very hard to test for an actual bacterial infection, so he's just throwing antibiotics at it.  Urine tests were negative.  I know exactly how you feel though...it is painful and very discouraging.  BTW, when it got a bit worse, I found that the Ibuprofen wasn't really helping after all, which does seem to indicate more of an infection rather than inflammation.

Overall, he didn't seem really concerned and doesn't want to "subject me to more radiation with another CT scan", but it would be great to have a more definitive diagnosis and root cause....uhh, kinda like CML.

My other theory is that it might be related to anxiety.  It's a bit of an involved story, but if it is in fact prostatits, I've read that some men have taken an anti-anxiety med and it goes away.  Wow.  The urologist I recently saw does not buy that theory at all.  But my CML diagnosis surfaced what I believe is a hereditary anxiety challenge.  So when I feel the pain start to crank up every few months (it starts very subtle and builds up over the course of several days), then I start having big-time anxiety about it...then it gets worse...then repeat.

So, infection or anxiety?  Since they haven't been able to confirm the presence of bacteria, it does have me wondering...

Hope this helps to compare notes.  This is quite the 'open book' topic!

[BY196]

Hi Lucky:

I realize this is late to chime in but I have almost exactly the same thing going on on my left side, left lower quadrant pain that is almost certainly muscular, but not a pulled muscle. I still have to finish getting it worked up, but I had a negative abdominal/pelvic CT scan and ultrasound. From my own reading, my best guess is an abdominal hernia (mine does not go as low as yours, which is typical for women).

If it helps you at all in your thinking, I switched to Sprycel from Gleevec a little under two months ago and it did not resolve.

Beth

[Pin]

Thanks Gerry - I will try that! I used to take a multivitamin, but now I'm taking lots of different pills for different things (mainly because I don't want extra of what I don't need!).

Dan - I do think that what we are experiencing is remarkably similar and given that we are so close in timeline/have had the same treatment/response to treatment it would be great if we could share stories and knowledge! I think my next stop will be at a urologist - I had a CT scan and they found nothing unusual, so I guess that means there is no structural cause, which is unsurprising given I've never had one before now. I think your theory about anxiety is a very interesting one - I'm a very anxious person and have been for a while. I noticed that my "flare ups" seem to coincide with periods of stress - could be linked in some way, but it is difficult to prove. I guess the good thing now is that when I experience the pain again I'll be off to the dr to check for white cells again, it's hard for me to recognise them because apparently my "presentation" of a UTI is atyptical (my symptoms are really vague and the first time I was diagnosed with one I was really shocked!). Anyway, hope we both get some answers soon!

Thanks Billie - that sure is interesting that you had them only on Gleevec - I really wonder what is going on!

[Jerry.s]

I know this is a older post but did these side effects go away in time . I am feeling some thing similar on my right side and also my my groin my doctor also check me down there and she said everything felt normal . I have a appointment on 17 th and if this continues I'll bring it up again

[LivingWellWithCML]

Wow - I hadn't thought about this one in awhile.  Yes, it finally vanished around the middle of 2012 (?), so it's been over 2 years since my last episode.  To this day, I still don't know what caused it and whether it was related to Gleevec - but the CT scan clearly showed inflammation around the urethra, and it definitely impacted my bladder and generally made life miserable.  If it's impacting bladder function, then I would suggest an appointment with a urologist.  As you read, I ended up getting a CT scan which revealed the location of the symptoms, but we never had a definitive root cause.  I'm also not convinced that the antibiotics made any impact - I just think that was a default treatment path, even though we had no proof of a bacterial infection.

 

I do recall that Ibuprofen helped a little bit, but perhaps not as much as I was suggesting in this thread.  Looking back, my best theory is that it was a symptom from anxiety, so as my mind settled down, the symptoms eventually went away.

 

Hope this helps -

[Jerry.s]

Thanks Dan 

 

Well I have had alot!!!!!! of Anxiety for sure in the last 6 weeks. My stomach issue seems to have gone away but I do still some pressure under my groin like my underwear is to tight.  Did that issue also go away?