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CML since 2005, Suffering from Bone Pain ever since

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Hello, I am new to your forum and was wondering if anyone else has suffered from severe bone pain while taking any of the TKI's.  I was dx July 2005 and initally started on imatanib 600 mg (can't remember if it was once or twice a day).  I was PCRU after a about 6 months and continued to stay that way for another year then my numbers began rising.  They switched me to dasatanib 50mg and after a couple of months I was once again PCRU and have been ever since.  Unfortunately I have had a couple of very bad side effects from both meds.  I have nausea quite often and I suffer from very severe bone pain.  I had to go out on disability at the end of 2007 due to the bone pain and the effects from the pain meds I was on.  I had been missing too much work.  I have been seeing a pain management specialist in 2008 and have had to continue taking narcotic pain meds.  The meds reduce to pain to somewhat tolerable levels but nothing gets rid of it.  Over the years I have tried many different appoaches to try to reduce the pain but nothing really seems to help much (either it doesn't work at all or it works for a while and then stops).  The pain is like what a rotting toothache feels like.  A very deep aching which mostly affects the larger bones in my body (femur, hip bones, shoulder blades for example) but can also affect smaller bones.  I went to the hospital several times with chest pain.  After checking out my heart in every possible way, it was determined that the pain was coming from my ribs and sternum.

I am beyond frustrated and so tired of being in pain.  Has anyone else experienced this?  If so, have you found anything that helps?

Thank you,

Wendy

I am so sorry to hear about the bone pain Wendy.

I hope that a reduction in dose , maybe to 20 mg will help ?

sandy suggested to me once for my husband that magnesium can help with bone pain , and you can get magnesium salts for the bath. 

My husband has only experienced bone pain once and it was in his shoulder after he over stretched it lifting a bike onto the garage roof which exacerbated an old injury . He said he had never felt such pain and it came and went randomly for weeks. I wondered if the the Sprycel he was taking increased the pain and caused it to linger so long. He saw a chiropractor which helped (he thinks).  

all the best Louise 

 

I'm so sorry to hear this. I was diagnosed 14 months ago and after 3 months on Imatanib 400mg a day I started getting the throbbing bone pain that never goes away and also the shooting pains that happen very often all day. I've tried Magnesium and Curcumin and Turmeric and didn't have any luck with them. I take Oxycodone 10/325 right now 3-4 times a day because I do construction for my job and I have to climb ladders and walk for 7 hours straight a day. It's the only thing that takes the edge off the throbbing and it stops most of the shooting pains. I've been there with you where I actually think I'm going insane and my Oncologist just acts like nothing is wrong as long as my Cancer levels keep coming down. I tell him that if I'm in remission but still have to take the meds and feel this pain is it really worth it. He never answers me he just changes the subject . I've tried other things like acupuncture and that didn't work. The only other thing that works was smoking marajauna and I don't like that it makes me paranoid but it does take the pain away so maybe try CBD oil wich does work for me but I can only take it at night because it makes me sleepy and I can't work while being sleepy. CBD oild does not get you high just makes you relaxed . 

Wendy,

You are a candidate for drug stopping (cessation attempt) given your long history with PCRU. Over 40% of PCRU patients who have kept PCRU status for two or more years remain drug free. You have an excellent chance of joining this group and eliminate your drug side effects (functional cure).

There is no risk to trying - worst case, you lose PCRU temporarily while you restart your TKI - and should that happen I would suggest you consider 20mg re-start dose. But as mentioned, there is a great chance you won't be back to taking a TKI.

Thank you so much.

I see my onc next month and will be talking to her about either reducing it or stopping it for a while and see if that helps.  I would love to be able to stop it but every previous time I try to discuss it they tell me it will come back if I stop it.  I even stopped myself for 2 months and stayed PCRU but the pain was still there so I don't know if I would need to be off it longer for the pain to completely go away or if I have been on it so long that the pain will never stop.  Who knows.  The onc I am seeing next week is a new member of the clinic I go to so maybe she can help.  Here's hoping.

Wendy

Thank you.  I am currently taking both methadone and morphine, both every 8 hours (the morphine is for breakthrough pain) and needless to say I can't work anymore.  I can't try the CBD oil what with being on the strong opioids.  Maybe I can try it at some point.  Something I can discuss with my  pain dr.

I wish you the best and I hope your pain gets better and you don't have it as long as I have.  There are days when I really do wonder if it's worth it.

Take care,

Wendy

Bone pain following TKI cessation is known to occur. It is a withdrawal symptom as the body re-adapts. The pain should fade away over time.

It is interesting that you stopped for two months without losing PCRU. That is telling you something. Your doctor is wrong when he says it will come back if you stop. It "may" come back - it may not - and you  have a 45-50% chance it may not come back. And even if it did, you can simply resume therapy and at a much lower dose. I think of it this way - each month off the drug is a month getting your life back.

I was off Sprycel for 9 months. I did have some thyroid pain and leg pain that appeared around month 2 or 3, but faded away by month 9. I am so glad I had those 9 months drug free. I will try again.

I highly recommend considering the advice from Scuba. I've only had cml for 7 years but also suffer from severe pain. Opiods are my only help. And they only help a little but better than nothing. I tried stopping but wasn't a candidate. Lots of people successfully stop. And starting back is not risky. In the past ot was thought that a mutation would develop but time has proved that theory to be pretty false. I stopped 2 times, both ony own and lost pcru. But I also regained it fairly quickly with a low dose. TKIs are definitely life saving drugs, but they are poison also. The less you can take, they better off. Scuba is HIGHLY educated and respected on multiple cml forums.