Melanoma with unknown source.

Yep, good luck, you'll be fine. I was surprised at how "easy" the treatment turned out to be. I was usually in and out in 90 minutes with the actual treatment taking 45 minutes - it was waiting to talk to the oncologist that took up most of the time!! First few times I went the plastic bag my drug in was was covered with a black plastic bag as it was apparently affected by light - that was weird. Let us know how you get on please.

Good luck x 

Hi thanks for getting in touch. How did you get on with your last appointment on the 16t?.  Mine was not good after telling me I could go on the immunotherapy for a year they gave me a pet scan and now they say it has spread to 5 different parts of my body. It was only about 3 months ago before  my op to remove the lymph nodes that they said they couldn’t find anything else on the pet scan. They are now offering me a choice. The original pembrolizumab for a year or the more aggressive combination of ipilimumab and nivolumab which as much worse side affects. Treatment lasting 2 years. I don’t think I have much choice but to go for the double treatment. They sent me for a head mri.  They say although they couldn’t see anything on the pt but an mri will give a clearer picture if it has spread to my brain. Won’t get that result until the 12th when I go back and then start treatment within the following couple of days. I am a bit scared the cancer has spread so quickly.

So please your results are continuing to be good. I am waiting to see if I have the BRAF gene.  Mine was not good after telling me I could go on the immunotherapy for a year they gave me a pet scan and now they say it has spread to 5 different parts of my body. It was only about 3 months ago before  my op to remove the lymph nodes that they said they couldn’t find anything else on the pet scan. They are now offering me a choice. The original pembrolizumab for a year or the more aggressive combination of ipilimumab and nivolumab which as much worse side affects. Treatment lasting 2 years. I don’t think I have much choice but to go for the double treatment. They sent me for a head mri.  They say although they couldn’t see anything on the pt but an mri will give a clearer picture if it has spread to my brain. Won’t get that result until the 12th when I go back and then start treatment within the following couple of days. I am a bit scared the cancer has spread so quickly.

Well can’t things chance so quickly. I was a bit naïve about treatment.  My news was not good after telling me I could go on the immunotherapy for a year they gave me a pet scan and now they say it has spread to 5 different parts of my body. It was only about 3 months ago before  my op to remove the lymph nodes that they said they couldn’t find anything else on the pet scan. They are now offering me a choice. The original pembrolizumab for a year or the more aggressive combination of ipilimumab and nivolumab which as much worse side affects. Treatment lasting 2 years. I don’t think I have much choice but to go for the double treatment. They sent me for a head mri.  They say although they couldn’t see anything on the pt but an mri will give a clearer picture if it has spread to my brain. Won’t get that result until the 12th when I go back and then start treatment within the following couple of days. I am a bit scared the cancer has spread so quickly. That also said they would see if I had the braf gene which I think could change the treatment offered.

Hi KTatHome

i hope your sickness has gone and you are felling better. For me can’t things chance so quickly. I was a bit naïve about treatment.  My news was not good after telling me I could go on the immunotherapy for a year they gave me a pet scan and now they say it has spread to 5 different parts of my body. It was only about 3 months ago before  my op to remove the lymph nodes that they said they couldn’t find anything else on the pet scan. They are now offering me a choice. The original pembrolizumab for a year or the more aggressive combination of ipilimumab and nivolumab which as much worse side affects. Treatment lasting 2 years. I don’t think I have much choice but to go for the double treatment. They sent me for a head mri.  They say although they couldn’t see anything on the pt but an mri will give a clearer picture if it has spread to my brain. Won’t get that result until the 12th when I go back and then start treatment within the following couple of days. I am a bit scared the cancer has spread so quickly. That also said they would see if I had the braf gene which I think could change the treatment offered.

Daisy

Hi DaisyRed, I’m sorry to hear that things have changed for you, I’m hoping that the 5 bits they did find are small and in lymph nodes showing that they are doing their job at stopping the cancer cells where they are and not let them spread further. 

Thank you for asking about me, the sickness has now gone, I’ve stopped taking the antisickness medicine. I occasionally have cramps in my hands as a side effect the suggestion is to take magnesium tablets, which I now have. I’ve walked 4K in each of the last 4 days so I’m feeling good at the moment. i am due a scan in early February, it’s been requested but I haven’t got a date yet, I am assuming all is well though. If the scan is good I will continue on the Encorafanib and Binimetinib tablets and if not it will be time to think about the trial Tcells which should be ready by then.

Daisyred, I'm sorry to hear your latest news hon.  Hope all 5 lumps are small and will shrivel up and die once the immunotherapy drugs hit them!

This all happens so very quickly at first then settles down hopefully once the regular treatment starts.  Take care xx

Dear KTatHome,

Glad to hear your sickness has passed lovely. 4 km is a good long walk, I love walking along the sea cliffs here. I live right on the cliffs.  Hope you're all recovered from the surgery.  I've read around the Tcell treatment, sounds promising too.  Take care xx

Now Alottment lover you are making me jealous living by the sea. I am determined to do 4K regularly and have several parks within a 10 mile drive that have circular routes, as well as a 2k old railway line country walk from home to the next village. A circular walk means I can cut it short at any time or extend it to the 5K park run route (which I’m not ready for yet) and it’s all on the flat. Surgery has healed nicely I thought I would look like a lumpy turkey for ever ! So I’m pleased, I have a fluid lump though that I’m hoping walking doesn’t make worse but it’s a gentle walk with frequent rests as I play Pokemon Go along the way, and look at the wildlife and views.

I think your words to DaisyRed are right that things settle down once regular treatment starts. It’s an uncertain and anxious time waiting for treatment to start and when blips happen. We have to be wary that results aren’t always good but life is much better when it’s lived looking on the bright side, and knowing that immunotherapy or targeted treatment works for some/most is something to be positive about. I hope whichever route they and you choose that it starts soon for you so that the mind can start settling and looking forward and positively.