Melonoma

That's great news Tootsietuddles 

I hope you're going to have a little, or big, celebration

Thankyou Latchbrook and to everyone else on this site who inspired and kept me motivated.

Although  I was stage2c and I am clear, they want me to talk with Neurology about preventitve immunotherapy treatment.

Is there anyone in the Community doing this and can they give any advice, warnings etc.

Thankyou all again 

Hi Tootsietuddles

My partner was diagnosed stage 2C in May 2019.

He had  WLE and SLNB which were all clear, & was offered a pembro immunotherapy on a placebo trial at the time. He was on the pembro 1 dose every 3 weeks for 12 months, as he wanted to do anything possible to prevent recurrence of the melanoma.

If there had been a 2nd year option of the pembro he would have taken up this option, but this was not available at the time. His side effects werent too bad, diarrahoea after the first dose, and fatigue in the first week after the doses.

Hope this helps

Margyy

Thankyou Margyy.I appreciate the info. I just read about possible side effects, so I have a lot of questions before I decide. BTW, if applicable, did holiday Insurance up your premium, even though he was clear.

We did travel abroad twice whilst on the pembro. His consultant gave him some steroids to take with him just in case of any problems, which he didnt need. I think it did put his travel insurance up slightly but not massively. He used staysure at the time.

Best wishes

Margyy

• Many thanks Margyy. I wish you and your  partner well.

Hi Sailor 2, thankyou. I have read your profile and you are an inspiration. I was thinking of not taking preventative  immo. And although you paint a scarry picture , I now think I will give it a go..well I will at least talk to Oncology before I decide to Chicken out. I hope more people read your profile. It puts quite a lot of things into context. Thanks again and keep well.

Amazing news! 

Hi there,

I had preventatitve gene therapy (dabrafenib and trametinib) which had a lot of fatigue coming with it but otherwise nothing that couldn't be controlled with other drugs, so that might really be worth it.

I am on immuotherapy now and have found personally that the side effects for me are a lot worse - I have had to cut my work down by 2/3. Some of the side effects look innocuous like 'itching' and 'light sensitivity' but in fact they can be (in my expreince) really, really disruptuve and unpleasant.

I would recommend asking your doctor what the most likely effects are, what they do to control them, what effect that has on people's lives and treatment.

For example, a skin rash with itching put me onto steroids twice in a row, causing a delay of 6 weeks to treatment. Nobody told me at the start that might happen. The delay is so long because although they can give you steroids to bring down the immune flare up which causes the skin problems, they can't treat you with immunotherapy while there are steoids in your body. 

Now I have light sensisitivy in my eyes, which is making all sorts of things difficultt, including working and reading. I have been told there isn't any help for this except dark glasses.

So I don't want to be a doom-monger, but I really would recommend getting God's honest truth from your oncologist about how people experience the treatment being recommended and the full range of options and limits on their ability to help when you get side effects.

I should emphasies that I am delighted to be having my treatment (necessary at Stage 3c with active disease spreading), but if I was offered this after stage 2 and I knew what I know now about how it makes me feel, I would personally probably have waited.

Just ask ask ask for more info from them ... and be aware that the immunotherapy stuff is so new they will keep saying things like 'anything can happen' and when you ask if it will stop they'll say 'I can't tell you'.

Hope you don't mind me being very honest here and please bear in mind I'm only one person of course.

Very best,

Susie

Thanks Susie, I like honesty..and I am aware that everyone reacts in a different way. I know I am clear of Cancer at the moment but I realise these little rotters have a habit of returning. So yes, lot of questions need answered. Thankyou for the good advice. 

Ta Nigel