Newly diagnosed 3A

Hey there

I don't have any experience at this stage so have no advice to offer I'm afraid, but just wanted to say I'm so sorry to hear this as I've followed your story so far and was really rooting for the all clear for you.

Hope you manage to find some info and support here for your next steps.

All the best to you x

Hi Jenny,

Sorry to hear your recent news. Ive been a similar position so thought id reply. (Ive been a lurker of this forum but now signed up to reply)

I'm 38 and had a mole removed on the top of my shoulder at the beginning of last year. It came back stage 2, the subsequent WLE /SNB came back as stage 3a(July).

The dermatology and when meeting the oncology team were keen to have immunotherapy throughout the conversations. My CT scan in August was clear.

I started on Nivo via subcutaneous in September every 4 weeks and I didn't really have any side effects and subcut was done within 15minutes. Had 3 rounds of this before my next CT scan. (Nov)

Unfortunately that scan showed spread to the lungs and I'm now at stage 4. I had one round of nivo and Ipi and my bowels could not handle it.  Kidney levels went through the roof and I've been on steroid treatment since, most recently having a flexible sigmoidoscopy which confirmed colitis in that area.

I'm still due another 3 rounds of ipi/nivo if my bowels to return to normal / able to reduce the steroids.

I haven't had any other side effects but the team tell me even though its unpleasant the immunotherapy is working with the effects I'm having. 

The decision isnt yours on your own, speak to family, friends. Speak to your care team. I wish you all the best and please reach out if there is anything else.

(Important to note,  my journey doesn't mean this may happen to you or others) 

Jon

Hi Jon. Thank you for your reply. 
I’m sorry to hear about your journey. How are you holding up?
Can I ask what your primary melanoma was? Mine was 1B and I think that’s why they’re advising surveillance rather than immunotherapy but would be interested to know why they advised you immunotherapy instead (just to help my decision making). 
Jenny 

Hi im stage 3a on surveillance. Mine was just below my ankle I did have dabrafenib and trametinib  as I have the braf but only done 4 months out of 12 due to side affects and finding thyroid cancer which is sorted now. My wle and slnb was in Aug 2023. I have not had any reoccurrence yet I had 3 positive lymph nodes in groin out of six.

I was stage 2c on initial so that might be a factor in their decision. 

I'm also due to go back next month for another wider incision as another mole came back Stage1a.

Holding up well thanks. Hospital appointments seem the new normal now.

Good luck

One step at a time.

I’m a 3A and declined immunotherapy, as I was not prepared to risk the side effects just in case I had any melanoma cells floating around. The oncologist agreed with this decision. I should have had targeted treatment as I’m BRAF positive, but I missed the optimal time for starting this treatment.