Melanoma of unknown primary

Hi , we spoke in the new to site, welcome to the group. I’m sorry to hear Ipi nivo didn’t work for you. Can I ask if you are in the U.K. or overseas for your treatment? I haven’t had chemo, radiation or TILs, but I’m interested to hear what your planning. Sadly when I was first diagnosed I followed the story of a paramedic who fund raised to get TILs with it not being available on the NHS so I know a little about about it, although unfortunately her treatment was not successful. Local TV news here did pick up a good news story a year ago from what I can remember of a complete responder to TILs after an Ipi nivo blip. 

I can imagine that after a mention of palliative care and a referral to a hospital that they have have used the words incurable firvyour cancer, as they did to me in 2015. I didn’t mention this yesterday but there is a very supportive group for people who have had an incurable or terminal diagnosis whose conversations range from introducing themselves, coping with thoughts and practical things, to living well and enjoying gardening, with many members enjoying the company of the group for years, and others unfortunately a shorter period. In case you want to have a look to consider that group (a range of cancers and treatments but the incurable in common) I’ve put the link below.

https://community.macmillan.org.uk/cancer_experiences/living_with_incurable_cancer/discussions

Catch you later

Thank you for your reply KT.  I am based in London and had the immunotherapy here.  It was decided yesterday that I will not have chemo after all, hurrah, although I will have to have it as part of the TIL process in a few weeks.  The chemo was supposed to be a bridging one, to keep the cancer at bay until I can start TIL.  However, I’d rather be as fit as possible for the TIL and given that there is a high risk of the chemo doing nothing but make me feel bleah, I agreed with the oncologist to skip it for the time being.  In any case, I will know in a couple of weeks uf the TIL “vaccine” is working (ie my lymphocytes are strong enough).  If it’s not, then chemo is the likely way forward as a palliative measure. VHaving brain and spine MRI’s today and may have to start radio again of any of the spine tumours are out of control (which I think they are given the pain in my back).  Fingers crossed there are no brain metastasis!

You mentioned above two TIL stories.  Would it be possible to have more details?  When you say that the TIL unfortunately did not work for the paramedic, do you mean it did not help at all or did it at least buy her a bit more time?  I know that the chances of TIL working (ie cure) are extremely slim). Thank you and have a great day!

Hi , 

I selectively retain good news I think at the moment, I googled to find some more info for you, I am not sure it will be helpful though, it looks like extracts from the blog I followed, and have either dumped from memory, due to selective retention or getting older. I haven’t re watched all of it before posting as I’m not currently in the right place for that. I restart Pembro on Sunday and want/need to keep a positive head. 

The advice Macmillan always give is don’t google, here is link to the lady who has now passed.

https://www.bbc.co.uk/news/av/uk-england-bristol-37229538/bristol-paramedic-kath-osmond-starts-cancer-treatment

The success story I remembered, was a small story on the Tv but by googling I have come across the following link, it doesn’t mention complete response but it mentions a quick response. 

https://www.trialsitenews.com/addenbrooke-the-first-nhs-center-involved-with-tils-cancer-treatment/

Thank you so much KT and good luck with the new Pembrolizumab journey, I’ll be thinking of you and send good vibes your way.

Hi , Your TILS date must be getting quite near now, I wondered how you were felling. 

I’m sending good videos back your way. 

[edited. I’ve just read you’ve are hopeful about a stage one trial coming up after having a gene sequencing test, that sounds fascinating]

Yes, good memory! Manchester are still testing the cocktail of lymphocytes and IL2 this week.  All being well, I should start on 7 July, all fingers crossed... 

Hi , I hope you are well, I was wondering how you have been been doing, you were expecting your TILs procedure to start on the 7th.

I’ve just be thinking about you and wanted to wish you luck a little belatedly for your start, but thinking perhaps now you might have some breathing space from the whirl of it all.

Hi , there’s been a year since you last posted, I don’t know if you are still using the Macmillan site. I am having a chat on Wednesday about a TILs trial so I was hoping to hear more about your experience.