PAIN IN MY RIGHT LEG

[Gymbuddie]

Hi All. I am a very active person. I go to work and do exercise classes, mainly power pump 4 times each week.

I have ALK Positive lung cancer with mets to me brain, liver, bones and spine. I take 180mg Brigatinab each day and 1 x per month Denosunab infusion. I was diagnosed in March 2022.

However, of late I am having a lot of pain in my hip and across my thigh which has limited the exercises that I do. Sometimes when I get up I feel like I will fall over as my leg kind off just gives way.

I am due to have a PET Scan on Friday.

I am just worried as I do not know whether is causing it. Since my diagnosis my last MRI & CT Scans show that the tumours are shrinking/shurnk, so my oncologist is happy with my progress.

Has anyone had a similar problem?

[sassassas]

Hi Gymbuddie

I feel for you - any new aches and pains always cause so much anxiety. My husband was diagnosed 2 years ago, and in that time, he's had so many new 'symptoms' which we both immediately assumed were new cancer symptoms. The reality is that his Stage 4 NSCLC has been really well controlled by his drugs (immunotherapy) in all that time. We've had an awful lot of anxiety though!

Clearly the PET scan will give you a definitive answer but there will be many things that could cause the sort of pain you're having, especially as you do so much in the gym. Please let us know how you get on.

Sarah x

[Gymbuddie in reply to sassassas]

Thanks for responding. I will let you know the results of the PET Scan.

[JanetteR57]

Sorry to read of your current pain and well done on keeping so active - good for mental and physical health. Do let us know how you get on with your PET scan. Sometimes symptoms can be completely unrelated to the LC but it's natural to jump to conclusions - I found the book 'cancer is a word not a sentence' by Dr Rob Buckman helped me put things into context when I kept having chest infections and similar respiratory symptoms that had turned out to be LC that every situation wasn't necessarily linked. good luck.

[Ellejayb]

I replied but it deleted so I’ll try again. Yup, exactly the same. I’ve been tested to the nth degree about what I call my ‘gammy leg’ and the pain I had in my thigh and hip. No evidence of cancer spread. I sort of think our symptoms might be a side effect of immunotherapy which is new on the block. A very good physio sorted my thigh and hip, while I have accepted that I seem to have a gammy leg and my high heels will never leave the wardrobe again.

[Ellejayb]

Just to add, I initially was told I had a ‘hole in my spine’ (the Denosumab got rid of that). I think my pain with my hip and thigh was partly to do with me subconsciously physically tensing up because I was so nervous about doing damage to my spine. In other words, the problem was ultimately ‘mechanical’. That is my self-diagnosis anyway. I hope your scan goes well.

[Gymbuddie]

Thank you. I am keeping my fingers crossed. My Oncologist has said that the results for a PET Scan are usually available within 48 hours. So I should know quite soon.