28 replies to this topic

[LLawrence]

     I've searched the old threads and see quite a few postings about muscle pain and a few about tendonitis.  It's taken me about 6 months to figure out that it's my tendons that hurt, not the bones or joints.  Feet, hands, shoulders, knees, lower back and hips are all involved as are some on my face.  This happened after about 3 months on Gleevec then approximately 4 months on Tasigna.  It completely resolves a few days off meds, then resumes after several days on. Has this happened to anyone else and if so, what helps?  So far, nsaids do little.  Wine + hot tub help more than anything so far, but there are obvious limits there. 

Thoughts?

LLawrence

[CML2012]

I ached for about 3 months when I started Gleevec then it began to ease off. I took Aleve for the pain.  My doctor told me that the pain would be better in 3 to 4 months and it was. If it did not get better he was going to switch the medication. I know there are 4 different drugs that all work on CML but may have different side effects.

[Trey]

Double the dosage of wine and also increase mineral intake such as calcium, phosphorous, and magnesium.  The TKI drugs deplete these minerals which are important to tendon health.  Some like to take cartilage supplements --sounds reasonable but I don't do it. 

[Pin]

Hey Trey, is it generally safe to take phosphorus supplements? My levels were gradually dropping at each 3 month test (approx 0.89, 0.87, 0.84), and then last month they were about 40 something (I think normal was above 0.80). I'm wondering if it will come back up again, but I think I'd just rather start taking something (I already take calcium and magnesium).

[LLawrence]

Thanks.  I've been on 2 of the TKIs so far and developed the same side effect with both.  I don't want to burn through all the available drugs just to have the same thing happen.  I'll give it more time, plus I'm going to physical therapy later this week.....hopefully that will temporize.

[LLawrence]

Thanks.  I've been on Calcium supplements, but will need to check about Magnesium and Phosphorus.  I'm suspicious that this is from inhibition of tyrosine kinase (unrelated to the cml target).  Do you have any good references about the different sub-types of tyrosine kinases?

Doubling the wine sounds appealing, but I have a fairly low threshold for alcohol.  Two glasses and I'd probably hurt myself getting out of the hot tub.....

[Trey]

Pin,

I get my phosphorous from drinking soda.  But supplements are fine.

http://www.livestron...horus-in-sodas/

LL,

There are about 100 tyrosine kinases.  Our TKI drugs vary in which "off-target" kinases they inhibit beyond ABL.  But most inhibit c-Kit and PDGFR which are probably responsible for the mineral depletion, but that is not known for certain. 

http://en.wikipedia....Tyrosine_kinase

[LivingWellWithCML]

Any idea if they block kinases that might result in weight loss?  I have always wondered that, since I lost 30 lb over the first 5 months of Gleevec and haven't been able to gain it back.  And I was already a thin guy!  Just wondering...

[mdszj]

I thought taking Calcium, etc can reduce the effectiveness of tki's.  Maybe it is a better idea to take the supplements several hours after you take the tki so there is no interaction between them?

[Rissa]

I take phosphorus pills.  Mine is a prescription.  I don't know if you can get them over the counter.

[GerryL]

Hi Pin,

I drink coconut water, plus a fair bit of milk.

[Pin]

Thanks guys - I'll see if I can get my levels back up with food first (hopefully it was just an anomaly...) and then try supplements if not.

[LivingWellWithCML]

Hi everyone,

 

I am desperate to seek out recent experiences of others who deal with tendon issues that might be related to the TKIs.  I am really struggling and could use encouragement and advice from my CML sisters and brothers who are dealing with this.  I have reached a pretty low point in my journey because of this limitation.  I am 4 years into Gleevec 400mg.

 

Short story - diagnosed in 2011 and was able to resume a wonderful running & cycling routine until I developed a nasty tendon issue in my left ankle which has sidelined my running for the past 18 months with no end in sight.  I also had to stop road cycling in September as I've developed what might be a tendon issue in my right knee - I am so frustrated and discouraged and have lost the ability to exercise on my terms.  Despite extensive rest, icing, NSAIDS (Advil, Aleve, and now Voltaren Gel), I am not healing.  I am 46 yr old and although I realize I am aging, I would still fully expect to heal from these irritations, but it's not happening.

 

I have seen some of the best knee doctors in the entire southeast USA about my right knee and I've had two MRIs since August of 2014.  I've also had an ankle MRI -- all of which have been negative for any joint issues and the surgeons can't find any reason to scope either joint.  I had an experienced ortho examine my knee extensively this weekend, and he pressed directly on the medial joint line in my right knee and I felt some discomfort, then it rapidly followed with a significant inflammatory response that filled the joint with fluid and created a 'hot knee' literally within a couple of minutes - something he said he's never seen in his 16+ years in this profession.  Totally baffled.

 

Does anyone deal with this?  I really could use some very specific recommendations on what to do next ... specific supplements/dosages, or should I even consider stopping Gleevec for 2 - 3 weeks as an experiment?

 

This is a pretty big setback in my journey and am desperate for some help. :-(

 

Thank you for any feedback and advice ...

 

Dan

[gerry]

Hi Dan,

Dropping dosage helped me with stopping additional issues happening, I'm not sure where you are sitting at the moment and if that is an option. 300mg was a lot easier on the tendons and muscles. 

I also found accupuncture helped with a few of the injuries, this can take a few weeks to work though.

But i still carry the injury where I damaged my right calf muscle when I got a cramp from stretching in bed.

 

Hope you find something that works.

[Trey]

Since I dropped to 200mg Gleevec daily I have not had the tendon issues I had with 400mg.  If dosage reduction is an option, that is probably the answer.

[roamingdoc83]

"Tendonitis"... joy.

Well, I was diagnosed in October of '09 - have been on and off (yeah, see my other new thread stared today) Gleevec (with no other pharms )  since then with a nearly two year hiatus and I HAVE some good aches and pains. Like Trey has mentioned, certainly notice the need for 'minerals!' (and I do take vitamins regularly - you ALL do know, don't you (?) that "if you eat right, exercise properly and regularly and supplement wisely you won't get cancer!?" Ahhhhuh?

 

Anyway... I do occasionally take Motrin/Advil/Ibuprofen (having had some major injuries which seem to obfuscate the full cause of some of my pain) and once in a blue moon a Vicodin / Narco... but I find exercise (no kiddning) to be very helpful in dealing with the tendon ligament issue (and a wife who says 'quite complaining', that really helps  ;^)

 

Supplement with some minerals, work the muscles a bit (don't over do it), perhaps some good NSAIDs and, if absolutely must, something stronger but seldom.

 

Good luck with all this!!!

[LivingWellWithCML]

Thank you everyone.  The prospect of a dosage reduction (or even temporary stoppage) is scary to me, but Emory told me that they do it 'all the time' and that it's safe when one's PCR is at a low level.  I have been at or below MMR for 3 out of the 4 years of my treatment journey, so if my next PCR comes back at a low level, then I am going to consider either a dose reduction or a 2-week stoppage to see what happens.

 

For those who deal with *tendon* issues, can you characterize what it feels like and how your joint(s) respond? I really want to validate that my symptoms are the same/similar as others.  For my right knee, I am getting a nasty stinging sensation that gets progressively worse during the day - it appears to be in the location of the 'pes anserine' tendons which run down the medial side of the knee. When it gets aggravated, the knee swells and I get a nasty 'hot knee' sensation that is only relieved through icing - Advil and Aleve do absolutely nothing.

 

Do others have similar symptoms?

 

Dan

[Trey]

I had issues with knees and elbows mainly.  Just felt like I was continually "pulling" a tendon and it healed slowly.

[gerry]

I had a swollen foot - across the top of it near the toes, extremely painful to walk. Hadn't done any injury to it, just seemed to happen. Had it xrayed and an ultrasound, nothing showed. I've also had my right ankle and three of my toes go numb. Still have calf and thigh issues from the Gleevec, this is really only an issue when trying to stretch them out in yoga.  

[LivingWellWithCML]

Thanks everyone - I really am desperate to get my ankle and knee healthy again.

 

This is my situation: I have been a stable MMR for 3 years straight, and have been dancing between MR4 and MR4.5+ for the past 12 months. My latest PCR was this week and came back at MR4.5+ again (in Emory's terms, they consider that CMR).  All on Gleevec 400mg with no changes over my 4 year journey.

 

At my appointment last week, my hematologist said that I would be a candidate for an upcoming stoppage trial for patients who have maintained ~ 0.01% IS (low detectable) for a couple of years.  The trial would see if patients like me could maintain a low detectable result WITHOUT treatment.  I guess the theory is that one's immune system might take over and keep CML at low residual levels without TKI treatment.

 

Is anyone else in this situation and trying this out?

 

For the moment, I am not ready to consider this - so I have decided to try a 2-week experiment and move to 1/2 dosage (Gleevec 200mg/daily).  It seems low risk given my deep response, and I want to see if it helps my ankle and knee heal.