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Discouraged with joint and bone pain


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#1 Mamarez589

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Posted 09 March 2014 - 05:51 PM

Male age 4o Dx CML nov 2013- first Glevac then Sprycell and now tasignia - still bad bone and joint pain not relieved by strong narcotics.   Discouraged!!  Advice?



#2 Susan61

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Posted 09 March 2014 - 07:05 PM

Hi:  Most of us experienced a lot of joint pain in the beginning.  Try not to get discouraged.  Why have you been on three different TKI drugs already.? Sometimes doctors switch the patient too quick to another TKI because of their complaint of joint pain etc.

     I can only tell you that I was diagnosed in 1998, and I did go through a lot of joint pain in the beginning.  Your only a little over the 3 month mark since your diagnosis.  I have been on Gleevec since Oct of 2000, and have never been on any other TKI drugs.  It has worked well for me, and maybe I just got used to the joint pain.

    I have joint pain now that is very bad, but its due to Arthritis.  I hope you get some relief soon.  Be very careful with too many strong narcotics or you could have more trouble besides the CML.

   Glad you joined the group.  We have so many helpful and knowledgeable people on here to help you out.

   We share so many things that we are experiencing to help others cope with their issues.

Susan



#3 mariebow

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Posted 09 March 2014 - 07:47 PM

I had the bone and muscle pain also,and was put on half a dose of Tasigna,to see if half the dosage would work, which it did.   Hope your dr find a solution for me.



#4 LLawrence

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Posted 09 March 2014 - 08:38 PM

I also had significant bone/joint pain on Gleevec that started about 3-6 mos into taking the meds.  I was changed to Tasigna, thought I had escaped the pain, only to have it kick in again in 3-6 mos.  Rather than burn through my options, my Onc and I talked about a lower dosage.  The lower dose, plus stretching exercises, plus heat, plus an occasional naproxen, plus an occasional glass of medicinal wine seems to keep me pretty functional.  The narcotics don't seem to help me much, either.  A great physical therapist helped me come up with an exercise program in a heated pool/tub that has been very helpful.  The other thing I've learned the hard way is that the pain is worse if I try to do too much or get too tired.  It seems to be cumulative, so if I eat well, sleep lots and don't do too much at once I do pretty well.  If I get exhausted, it takes me days to recoup.  Everyone is different, but maybe this will help.

LL



#5 RandellR

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Posted 09 March 2014 - 09:18 PM

Thanks to all of you who replied. LL, I really like your post,thanks Susan. the last 2 drugs I had more problems than   joint pain. I also have Cerebral Palsy so, I am also dealing that.

Last Friday, my Dr.. lowered my dose.   Mamarez is my  mother who posted for me,

Randell


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#6 Trey

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Posted 09 March 2014 - 09:46 PM

3 TKI drugs in 3 months has to be a record.  It takes 3 months to get used to one drug so the body can adjust.  You are not giving any one drug enough time.  Advice: more patience.



#7 tazdad08

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Posted 10 March 2014 - 08:48 AM

I also like LL's post. I was a multi-unit restaurant manager running crazy for 50/60 hours a week. I am now part time at an auto parts store. I have been going to an orthopaedic dr as well. I still don't really get any relief, except when I use the occasional Hydro 10/500. I usually just have to slow down and limit my activities, which I still have a hard time accepting sometimes. Learn the "NEW YOU", as I put it now. Do what you are comfortable with. I have my frequent "affair" with my heating pad now. It stays plugged in and waiting, I don't even bother putting it away any more.


Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!


#8 RandellR

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Posted 10 March 2014 - 10:25 AM

Trey, thanks for your advice as you really know your stuff (I've read other posts).  Just to clarify any confusion about the Post.  I had my Mom post the initial "I'm discouraged message" as I couldn't get my computer to post.   Her name is Nresneder and she has traveled 8 hours to help-thanks MOM.  I'll take over the post now and appreciate all the responses.  Hope I can help later.   A little about me (I am speaking now and have Mom typing)  Typing is difficult with severe spastic CP as I am a one finger typist and frequently hit the wrong keys(apologies upfront).   I normally do my own typing, live alone, and have my own non profit.   So...I am used to doing things the hard way!   Despite the challenges of CP I have managed to get my Masters degree and was working on a PhD until this hit.   I did tell my  Dr. I was willing to stay on 2nd TKI but the pain does make me more of a fall risk than I already am (I use a walker).  Get the feeling they don't know what to do with CP and CML      Anybody out there with CP and CML?   Anyone care to comment on how this disease may impact spastic muscles?  Again, thank you for your help as I'm already less discouraged and feeling less alone. 


Randell Resneder


#9 Trey

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Posted 10 March 2014 - 04:36 PM

Good to have the background information.  TKI drugs require the body to adapt, and we are all different in how they impact us.  Bone and joint pain, as well as muscle pain and spasms/cramps are common side effects, which could be even more of an issue for you than for the rest of us. 

I do not think the TKI drugs would negatively impact your motor functions, which are already impaired, but it can make the things you want to move (muscles, joints, bones) feel less inclined to want to move due to pain.  Gleevec may be the worst for muscle cramps and spasms, and possibly for joint and bone pain for some.  So using Tasigna may be better for Cerebral Palsy patients, but there is little to no literature about the combination of CML and CP.

Sprycel and Iclusig (Ponatinib) are the only TKI drugs which can cross through the Blood-Brain Barrier (BBB).  That means it can get into the spinal and possibly cranial fluids, whereas Gleevec, Tasigna, and Bosulif (Bosutinib) cannot.  Whether that would be good, bad or indifferent for you I cannot say.  Did you notice any worsening or lessening of your CP symptoms on Sprycel? 

Overall I believe you will find that the pain will lessen over time.  In the meantime, it will require focusing on the fact that the body usually finds ways to adjust to these drugs, and that this is something that simply takes time.  But I cannot state with certainty how much relief you will experience as time goes by, just that most of us experience a lessening of these side effects after a few months. 



#10 RandellR

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Posted 10 March 2014 - 09:19 PM

Trey,

Yes, after 5  weeks of taking Sprycel I noticed a lot of side effects that I could not live with  Gleevec had me doubled over in my hospital bed. I thought that I had a high pain tolerance, maybe  I do. I am  going to talk to my dr. about pain relief.   I guess that I am in unchartered territory again, man I hate this! Thank you for all of your  help.

Randell


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#11 LLawrence

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Posted 11 March 2014 - 11:58 AM

Randell,

I can imagine that the pain of TKIs would impact your mobility.  The pain for me seems to be more related to tendon pain at the insertion points and not truly in the joint.  When I get out of bed in the am, I have to hold onto the bed to keep on my feet at first.  And that's without cerebral palsy.  If yours is also tendon pain around the joints, it would make sense that it could be even more strain on stretched tendons (from the CP).  The other helpful thing I have done is to take a bedtime dose of flexeril.  This keeps the morning stiffness down to a dull roar.

LL



#12 RandellR

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Posted 11 March 2014 - 10:28 PM

Thanks  so  much for your reply and yes I think that the TKIs are impacting my mobility. It is emotionally draining because I worked so hard to accept that I am not  doing well physically. I must  carry on! Thank you for the support.

Randell


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#13 GerryL

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Posted 11 March 2014 - 11:41 PM

Hi Randell,

My only addition is welcome to the forum, I found the guys and gals on this site a great help in understanding and managing my CML +  side effects from Gleevec.



#14 Cowboys fan

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Posted 24 January 2017 - 07:14 AM

Hi new to the forum - diagnosed in July 2016 managed okay until plurel effusion then bad hives rash finally switched to tasgina this month! Numbers look good but after 4 days on Tasgnia developed bad ride side hip pain and spasms! I feel like a failure - high pain tolerance but not sure what else to do! Please tell me my body will adjust and it will get better! Feeling down and discouraged!

#15 Melanie

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Posted 24 January 2017 - 07:41 PM

Hi Cowboy fan! Sorry you're feeling so down and discouraged, but glad you found your way to this forum. Hopefully your questions will be answered, but most of all, know you're not alone and most welcomed.

You didn't mentioned where you're at in your response to your treatment, but it's not uncommon to experience significant bone pain in the early part of your treatment. Some continue to experience it for some time or they just become more accustomed to it with time and can tolerate it better. I would suggest staying hydrated, take supplements of magnesium and calcium, and some ibuprofen if your Dr allows. Praying that in time this will pass for you.

I'm sure others will come along with better and more effective suggestions for you. The above is what has helped me and still does when I get a flare up. Best to you... and sorry your cowboys didn't make the playoffs!
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#16 tiredblood

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Posted 24 January 2017 - 10:50 PM

Randell,
I can imagine that the pain of TKIs would impact your mobility.  The pain for me seems to be more related to tendon pain at the insertion points and not truly in the joint.  When I get out of bed in the am, I have to hold onto the bed to keep on my feet at first.  And that's without cerebral palsy.  If yours is also tendon pain around the joints, it would make sense that it could be even more strain on stretched tendons (from the CP).  The other helpful thing I have done is to take a bedtime dose of flexeril.  This keeps the morning stiffness down to a dull roar.
LL



#17 tiredblood

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Posted 24 January 2017 - 10:53 PM

I'm leaning toward tendon pain too, rather than joints. All anyone seems to want to rx are NSAIDS which don't help. This is frustrating. I can't wait to hopefully one day be off the TKIs.




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