Newbie - hi all and questions

Hi Jojomamabee 

I was diagnosed with melanoma 10 years ago, although not on my vulva, and I didn't need immunotherapy. However, I noticed that your post hadn't had any replies yet so responding to you will 'bump' it back to the top of the discussion list again.

There are lots of people in the group who have had or are having immunotherapy so hopefully one of those will pop on soon to share their experiences with you. Do you know the name of the immunotherapy you'll be having? If so you could put this in the search bar to find others here who are having that type.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi Jojomamabee. 

I can't relate to your particular type of melanoma, however I have completed a course of immunotherapy, so I thought I'd try to give you some confidence that immunotherapy isn't necessarily terrible! 

I was diagnosed as Stage 4, and as a result was started on a combination therapy of Ipi/Nivo in late 2021. After four doses, I then transfered to the maintenance dose of just Nivo for approx. two years. 

I finished treatment in late 2023.

1. The good points:

The cancer retreated almost immediately and there had been a full response by the end of my combination therapy. 

I was NED (no evidence of disease) by the time the treatment stopped. 

I had very few short term side effects. A bit of tiredness here and there, but nothing that a 15 minute nap didn't sort out. Also some dry skin, but no major skin infections or the like. 

2. The not so good point:

(And there is only one that I can think of). The drugs kicked my immune system into overdrive, and it not only sorted out the cancer, it also affected my pituitary gland, resulting in secondary adrenal insufficiency. 

This is a serious issue, but is controlled on a daily basis by hydrocortisone tablets. 

So: daily tablets verses removal of cancer. I'd have taken that with open arms before commencing treatment. 

I can't deny some people struggle more than I did, but I think it's worth pointing out that immunotherapy isn't always an issue. 

Good luck in your "journey" and best wishes for the future. I'm more than happy to provide more feedback if you need it. 

Thank you.  That’s what I am afraid of, the possible secondary issues from the treatment of the cancer.  But I suppose it’s none, some or all.  Like you say, the weighing up of the risk, cancer or something else.  

I was told without treatment, potentially I had 9 to 12 months to live, so I really didn't have a choice, but if I did, I'd have gone with the immunotherapy. 

It's so effective nowadays, and I know quite a few people who've had no long term issues whatsoever. 

Good luck.