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Severe general pains

Hi all,

 

Since the last Tuesday, I am suffering from extreme muscular, bone and joint pains especially in my hands, both legs and left arm at the point that It is difficult for me to walk (pins and needles pains too), a bone pain in my left knee avoid me to move easily and I have never suffered from this before. I had a pcr one week before which showed a bcr abl decrease, so it is a good point. I have done a blood test yesterday, all is fine (blood and enzymes) expect CRP (I am not sure of this word in English) is just above the normal limit at 7 which is an inflammatory of flue indicator but I am not ill, no fever, nothing.

Moreover, since one month, I am suffering from nausea, sweats day and night and extreme weakness. I am actually wondering if someone suffer like this on tki and would be very grateful of testimony in that way. I am asking myself if there is not something else than cml because being so ill under TKI after several months can't really be the reason, I can't believe it. Then if it is tki and I have no way to know it except stopping sprycel, I think I won't have the strength to take it all my life, it was as if I was poisoned. I am in general permanent pain since this week and worrying for my mobility. 

Shall I have a bone marrow aspiration that I have only done at my diagnosis, but as I am phi masked and in MMR, my oncologist told me that it doesn't worth it . Could this exam show other abnormalities?

Thanks in advance for your help and please apologize for my mistakes,

 

Cheers all,

Francis

 

I'd personally suggest that you go to your doctor and have a full general health check.

The only times I've felt like that have been before I went on TKI's.   Specifically when I was on interferon A and when I was immediately pre and post BMT transplant.

 

Hi, francis

 

I'm sorry about your pains. Really don't know what to say. I remember my doctor told me once that some types of exercises are good for fatigue and pain. Maybe you should try acupuncture too (it worked for me!).

About the BMA, other abnormalities can rise in the PH- cells. i had a trisomy 8 (three chromossomes 8) but it wasn't a big deal and now it's gone (all doctors told me that tki can couse this). Good luck. get well soon!

Hi Lucas,

 

Thanks for your concern, the thing is that I am getting worse day by day, feeling extremely weak like I never was before, especially in my legs which are painful and I never knew such kind of problem before, I feel nausea and I sweat too. My blood tests are absolutely normal, my pcr is at 0.04% (10 days before these symptoms)  and goes down month by month slowly but surely. I have asked my oncologist who told me that as I am in MMR I have no more PH in peripheral blood. She told me that it was absolutely impossible to discover something else in bone marrow biopsy, but all seems to be very abstract for me. I know that I should be confident in my cml team, in myself but I am in such pain that I think that there is something else, or may be long term TKI side effect. I don't know what to think, I feel like an extraterrestrial when I compare myself to other cml patients. The pain is really stronger than me at the moment and I am totally unable to fight against, I am so scared...

Francis, i know other patient who is very intolerant to all tki but is doing well over more than 10 years of treatment. I'll ask him if i can send you his e-mail. i think you should chat with him. Sending good vibrations to you!

Hi Francis,

Severe musculo-skeletal issues

I dont know if my experiences might help but have been on Glivec/imatinib for 9 years now but about nine months ago had a disturbing  episode of  very severe bone pains in the right leg and knee especially at night -the only immediate relief I could find was a heated pad that was placed in the microwave for a few minutes -in fact ice made it worse.The pain in the knee and leg gradually declined  but  continued for about three months and it was difficult to walk.This event was not easy to explain but after some months it cleared .I have  read that CML patients who had severe bone pains and skeletal issues when sent for bone scans indicated nothing abnormal.-so quite a mystery.

It seems that tkis can cause various problems for bones, joints and muscles and in my experience these tend to be periodic or cyclic.

I dont know what stage you are in your treatment but if in the first year or two it is not unusual to have bone pains as the tki acts and clears out the affected cells in the bone marrow.If your various tests indicate little amiss I would assume that like many of us you are suffering some of the severe skeletal side effects of your treatment.In addition if one looks at the medical literature it is not always common but one can still  have night sweats and severe fatigue as side effects from tkis-often on a periodic basis.

Diclofenac is good for bone pain but is on prescription only and needs to be taken with something like omeprazole to prevent stomach bleeding-beware of overuse of ibuprofen and paracetemol as painkillers . if on sprycel/dasatinib do not take aspirin as it might lead  to bleeding in the stomach.

I have found some remedies such as drinking lots of water and also stretching the muscles/joints (on the stairs or against the wall) with twice daily exercises helps A calcium supplement might be useful.

Try to stick with it but discuss with your doctors to see what remedies they suggest

Best wishes

John.

 

 

Hi Francis,

sorry these pain issues have not lessened even though you are taking a different TKI now. You molecular response is good- so at least you have some good news. You are certainly not alone is suffering such severe side effects... see John-Paul's post in the thread below www.cmlsupport.org.uk/thread/10793/update-response-chrissie . He is suffering from similar effects and even though he is on a TKI break, he is still unable to find an answer as to why this has happened. As I am sure he will tell you, even CML expert clinicians do not know why this is happening to a small minority of CML patients. All I can say is that you try alternative methods to ease/control the joint pain (like possibly acupuncture as John has suggested) as well as looking at your thyroid levels (T3 in particular). You might also try asking your clinician to try you on another course of steroids in order to support your adrenals. When you do not have the correct ratio of thyroid hormones produced by your thyroid (hypothyroidism) and/or your adrenal glands are exhausted through physical and emotional stress then a condition called Fibromyalgia can develop and cause untold problems- especially muscle and joint pain and weakness.

Sandy