Immunotherapy not working…

Hi Allyona,

No wonder you're shell shocked and I'm sorry to hear you find yourself in this unexpected space. Sending some big virtual hugs.

While I'm not in this position myself, I did want to direct you to a very friendly bunch of people on another forum who will understand. I hope the title of the forum doesn't throw you as there are some people on that forum who have been on there long years despite their cancer not being curable.

All will be well placed to offer support if you repost what you posted here in that forum as well. They will also understand what it means to be dependent on a trial.

https://community.macmillan.org.uk/cancer_experiences/living-with-incurable-cancer-forum

Rose x

I should also add there are a lot of melanoma trial, I think, with good results. So, I'm not saying your cancer is incurable. Just that as you are dependent on a trial I think you could join the above forum where there are other people in that boat who will understand.

Also, the clinical trials page link. I also had to talk to nurses about trial for relative, but not melanoma. Anyway, page covers things better than I can. Maybe do a post on melanoma forum asking for melanoma trial info directly to catch people's eye. Plus, are you on other melanoma sites? Hope I haven't thrown too much at you this morning. xx

www.macmillan.org.uk/.../clinical-trials

Thank you Rosalinda for taking the time to reply x

Hi Allyona, 

So sorry to hear this. If you don't mind me asking, is your diagnosis skin melanoma or mucosal melanoma?

Best, 

Vivi

Skin - nodular melanoma 

Hello allyona,

I’m awake into the wee small hours and your post struck me - being shellshocked is how I feel every time there is another hurdle to get over and sometimes it seems relentless. 
I dip in and out of the other site as well. My immunotherapy treatment is referred to as ‘palliative’, which scared the living daylights out me when they first told me.

I do get comfort and reassurance on the other site, though I don’t think I’ve posted anything yet. It’s very informative, and folk seem really down to earth.

I also visit the bladder cancer site as my 80 year old mum was diagnosed 3 weeks after I moved to be by family and the sea,

It’s amazing how no 2 people have the same journey. But there is hope. I do hope you get time to yourself, difficult when your a mum xxx