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Trapped nerve or TKI symptom

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Hi all,

Been a while have posted but I woke up a few days ago with a painful right shoulder blade that radiates down the back of my right arm making my 2 first fingers after my tnumb partially numb at the tips. I might add I’ve recently bought some new pillows that are super firm so firm I’ve gone back to an old one. Maybe this is the cause and I am over worrying?

From a Google it seems to suggest a coincidence of a pinched nerve however the TKI Tasigna (Nilotinib) also mentions joint, muscle, bone pain and nubness as one of its 1 million nice symptoms? Difficult to know if TKI or a trapped nerve. The only relief currently is a bloody hot bath of Radox and certain positions that are less uncomfortable....

I see my consultant tomorrow for my 6 month PCR. I’ll raise with him and hope my results are less than 1%.

Many thanks

Alex

Hi Alex,

Yes after 12 years on imatinib I get on occasions tingling and numbness in the fingertips at night .

I have a trapped nerve in my spine but am resisting the offer of spinal injections.In addition I suffer from myositis which is inflammation of the muscles and affects the right leg and it seems to be drug related.In my case I am not sure if it is the drug or nerve issues causing the major discomforts or both.

Just a thought: ask your specialist if you need to have a specific blood test for your CK-creatine kinase to see if there is muscular inflammation as a result of the drug.Your CK score should be no more than 250;currently mine is about 400 and has been up to 800 .

I still have physio  which helps and you might find that stretching and strengthening exercises will ease the pain.TKIs do have some odd effects on muscles and joints and in the interest of trying to maintain a suitable PCR we cannot discontinue.I suspect that in the context  of staying alive we just need to live with such side effects.

Trust all goes well

Regards

John

Hi John

Many thanks for your helpful response. I am erring on the side that’s it’s TKI related but could be wrong. Just hoping it’ll subside with time or with some manipulation with tabs or touch. I will raise your point with my consultant tomorrow and see what he recommends up until now mostly very mild symptoms but I am 7 months in and hoping this is just coincidence but might not be.

Certainly makes you paranoid all this little things before CML no issues. Oh the joy! I try not to moan as I know things could be so much worse.

Main thing is my PCR is good. Hope all is ok such a mentally and emotionally draining process.

Many thanks

Alex

Just seen my consultant for my 6 month PCR and I am presenting at 0.7% so I am still on target and have met the <1% by 6 months that’s a relief. I am happy with that result considering in March I had a very high Sokal score, 330wc count and 900 platelets. Thank goodness for these medicines.

On another note I mentioned about my pains and he said it’s absolutely fine to take NSAIDs for pain as long as I don’t over do it. Seems to be conflicting information online. I also mentioned about taking Vitamin supplements I.e the suggested Curcumin and Magnesium and said don’t waste your money or time vitamin suppliments do nothing. He’s heard it all before. He’s the doctor but surely if people swear by it then there is no harm taking them right? Even if it is placebo? Just throwing it out there.

Alex

Alex - Congratulations on your great PCR - you are indeed an "early responder" and well on your way to MMR at a year.  On your shoulder pain and numb fingers, I vote for the new pillow as the villain.  Been there!  I had a friend who actually tore a rotator cuff IN HIS SLEEP.  Also, a lot of back pain and neck pain is created in the brain pain centers - it's real all right, but it's more due to tamped down anger/fear/shame/guilt which clenches your muscles and squeezes the healing oxygen out of your (mildly) stressed tissues.  Your body is trying to distract you from these distressing items.  (See Dr. Sarno's Healing Back Pain.)  Your CML "paranoia" has been shared by us all and even seasoned folk like me fall prey when the norm crumbles in some way.  We're all in a state of alert, forever - the trick is in finding a middle path where we continue to learn and report and ask questions, but can keep ourselves from getting panicky and going to the dark place.  On the NSAID's - I think what your doc is trying to say is, don't exceed the recommended dose or exceed the time frame listed on the bottle and you'll be fine.  My advice is to take the NSAID's to relieve the immediate pain so you can forget about it, go on about your business, don't baby the shoulder or do special exercises - tell yourself, this is my body trying to distract me with symptoms because underneath I have emotional issues going on.  I'll wager it goes away.  If not, then you can blame the Tasigna and/or see an orthopedist.  Get rid of the pillow!

Hi Kat

Many thanks for your lovely message!

I am more inclined to think it is my pillows as you’ve suggested dare I say it but maybe a bit better today thank goodness.

Been under a lot of emotional stress the last couple of weeks. Normally I cope very well but I do have my moments especially leading up to test results. I am happy were I am and must remember how far I’ve come rather than how far I need to go. Was such a relief to be able to take NSAIDs that really helped me yesterday.

Always offer advice but we very little listen to our own ;-)

Take care

Alex

I was told by both Onc and pharmacist to avoid NSAID. Mayo Clinic.  Only Tylenol in limited amounts was OK.  This makes dealing with headaches and muscle aches a problem. What have other people been told about NSAID for pain relief?  I am on 80 mg sprycel. Gitel.

Ah, Alex, you referenced Alice!  So very, very true.  Humans.  Whaddaya gonna do? 

Just so you know, I still, after all these years, tense up and get irritable and anxious around PCR test time.  Very often, I don't even realize it, and I wonder what's wrong.  Then the coin drops - oh yeah, 2 weeks to go, THAT'S it.  Sigh.