Shoulder and arm pain

[Kayseez]

I have stage 4 lung cancer on immunotherapy Pembrolizamab for a year. Last few weeks been getting severe shoulder/arm pain right arm - had vats lobe to my on same side over a year ago, doctors say it is 'probably' muscular and not related to my tumour. Severe pain and I feel unheard and unsupported. Has anyone else had a similar problem with shoulder pain?

[Kaylee20]

I also am on Keytruda for almost two years now. About one month ago I told my doctor I am having problems raising my left arm above my shoulder. I also told her my arm cracks when I make it go up higher. I asked if this was from the Keytruda and she said "No it's arthritis probably". I am 63 years old and have never had a problem with this shoulder. I asked her how it could come on so strong but she said it was not Keytruda. If I don't more it there is no pain at all. Only time I have pain is when I try to raise it above my shoulder. Don't know if same as yours but this is my experience lately. This is also the arm that I had both of my shots for Covid 19? Karen in Minnesota

[Kayseez in reply to Kaylee20]

I just want to say thank you all for so many thoughtful and informative replies😘I will answer individually when I am feeling less tired. Just had an arduous trip to the pharmacy as my Gp has increased my pain meds not a bad thing but not good either if that’s all they can do! Thanks again!

[Seaspray298 in reply to Kaylee20]

Kaylee20 - It sounds like you have a partial frozen shoulder. I had shoulder problems when I was on Opdivo (same as Keytruda) for 4 1/1 years. You should look into going to a Physical Therapist or do what I did....YouTube shoulder exercises. They hurt like crap to do but I resolved my problem on my own. After the vaccine, I got SIRVA which is a frozen shoulder from a wrong placement of the needle into the bursa. I had an orthopedic dr look at it and was told steroids and PT. I did my own PT again and had full movement within 2 weeks. Good luck!

[Denzie Moderator Volunteer]

Muscle and joint pain are well known side effects of pembrolizumab. From the Keytruda website: keytruda.com/side-effects/

[Goingcuckoo]

My husband was on pembrolizumab for six months. During this time he had shoulder pain and pain at the top of his right leg/groin. It was so bad he had to use a stick to walk. This we were told was a side effect of the pembrolizumab sadly. He had to come off this and start chemo. His leg pain disappeared but he now has muscle wasting at the shoulder but luckily no pain.I would have a word with your oncologist. It's a fine balance between side effects and if the pembrolizumab is working. After six months we found out that the pembrolizumab wasn't working anyway the choice was easy.

Hoping all goes well with you.

[StLScorp]

I also was diagnosed with Stage IV NSCLC ... Many of us who are on Keytruda have experienced much of the same things off and on, to varying degrees ... I had left shoulder/upper arm pain show up about 6 months in to treatment ... I reported it to my oncologist ... she suggested I have it checked out by an orthopedic doctor to get an expert opinion ... the ortho took some xrays .. told me that I had arthritis in the shoulder joint and had seen similar pain from the arthritis radiate into the upper arm and intensify in patients on immunotherapy .. so basically is it's a side effect of the Keytruda ... I guess I've been lucky with my treatment regimen as well as my oncology team at Siteman here in St. Louis ... I had an 80 % reduction in the size of the both major tumors and have been stable now for about 5 months.

[dlwhite1034]

Yes, Kaylee,I had been on Keytruda for about 7 months and had to stop it because it caused severe colitis. I had my last Keytruda infusion 12/20 . Seven months after treatment I began to have issues with my left shoulder and left side of upper chest. At that time it only bothered me in the evening when I was laying down on my back - when I changed positions it helped - I took advil and it relieved it a little bit. I am now having it in both knees with cracking and fluid retention. I was referred to a rheumatologist - she ran several tests. and determined it was not due to arthritis. They have drawn the conclusion that I'm having a systemic inflammatory response and they attribute that to Keytruda, Tabrecta and the entyvio infusion I had for the colitis. I take vicodin for pain (and it helps with inflammation) and prednisone to reduce the inflammation. My hope is that the pain will lessen over time and I will be able to stop the vicodin. I am being tapered off of prednisone now at 9mg per day.

[dlwhite1034]

I do want to add that the Keytruda worked because I am in remission from Stage IVa lung cancer. I am hoping these side effects go away over time.

[Seaspray298]

Inflammation is most of our problems and one that can be held at bay with some work. I am against taking anything stronger than Advil for personal reasons and will work to find a solution elsewhere. Strengthening exercises (using bands) and stretching will unlock this inflammation in almost all cases. Back pain can be alleviated with heating pad and stretches along with some core exercises. Unfortunately many people would rather take a pill then do the work the body needs. We all make our own choices. I have been off all immunotherapies for 17 months and the inflammation is still with me along with the osteoarthritis. Each day I skip exercise or stretching I pay the price of pain. Hope this was helpful to those that want to ease your pain the natural way! I use YouTube.com for many exercises, yoga and breathing.