Immunotherapy trials

I had pembrolizumab on the NHS for my TCC kidney cancer once chemotherapy had proved ineffective. Unfortunately I had a nasty reaction to the second infusion so it was stopped.

Subsequently, a scan indicated that the single infusion had had a beneficial effect, so my oncologist went back to the cancer drugs fund to get funding for me to try another immunotherapy, atezolizumab.

I've just had my second infusion of that.

I have limited experience but I'm happy to answer any questions. I'm sure that SiT will be along in a minute. He's been on atezolizumab since Roman times.

Stuart x 

Hi RainieDay

My next infusion on the 8th April will be my 18th! If you click on my WBRT mask, you will be taken to my profile for the full blog, but suffice to say that NO-ONE is more surprised than I am that I'm still here to annoy everyone!!! Hehehe!

The next job is to see if it has helped the RT to deal with the 3 Brain mets discovered in Jan. Scans due in a few weeks... We'll see

Hello Rainieday, I’ve had 52 iv’s of Pembrolizumab for metastatic melanoma, #53 is due next week. I started in 2016 a few months after it had been approved by the NHS, and my previous treatment was no longer working. If there’s anything in particular you want to know Just ask.

NICE has given different rules for different cancers, metastatic melanoma is licensed for as long as it’s required, where as I believe lung cancer patients can only have it for a max of 2 years. My story is in my profile, I have low burden of disease at the moment just a few lymph nodes, that keep enlarging and subsiding, a big change from 2015 when less than 12 months was mentioned. Jimmy Carter a former president of USA also had Pembro for metastatic melanoma, he was the story to aspire to when he was in the papers for being clear. I’ve had little in side effects I get tired for a few days after each dose, if I try to push through it takes longer to get back to normal. Most side effects are because the immune system over reacts, thankfully I haven’t had them but there is a long list.

I was a complete responder back in 2017, and had a year off treatment being clear and was put back on the drug when scans/ biopsy  showed lymph nodes affected again, as things can change fast. I had a few months off treatment this time last year when I was given a choice due to covid risk, I resumed a few months later in June after I could feel growth again and a scan confirmed that. I’ve scan results due next week, I hope they are reported on time but I’m currently feeling well.

HI There! I am on Nivulumnab/Opdivio since August 2016 for Lungcancer, still alive and well.

It is good you are feeling well and prembrolizumab is doing well for you. Always anxious when there are new scans.

my brain scan was stable but my liver and lung mets have grown in the ATRA a which is a targeted drug that the NHS a support me having but I have to pay for it myself. I tried upping the dose the last 2 days but have gone back to the original dose of 3 twice a day. I feel well in this dose. The extra tablet made me feel strange dizzy and very tired. 
I want to like you carry on feeling well x

I literally stop breathing when someone mentions paying for treatment. My brother lived & worked in Barbados for many years. They used to have a whip round every time a friend of theirs was due chemo, and there was nothing left over for after care.

I’m the opposite @ruthjp, the brain & spinal cod cancer is progressing but after a sudden growth the bone, lung and liver mets have stabilised and aren’t causing any new problems, the spinal mets are causing a lot of pain but the dose of steroids has been quadrupled so party time!!! xx

Lovely to see your name on here KT, all crossed for the scan x

Thanks Stuart. I hope you get good results. I'm curious to know why you have to have had a cycle of chemo before they'll consider you for immunotherapy. I wonder if anybody has ever just gone onto any immunotherapy and bypassed chemo?

I have also been on Pembro since 2016 (aggressive type 2 endo cancer) UPSC. I took myself off in Novemeber when I got diagnosed with medically induced type 1 diabetes. Pembro already fried my thyroid and I have MS as well.  If am very weak now from all the treatment, side effects and diseases.  I may get back on it if I get stronger. Lots of people on it with great success. I got the diabetes 4 years after starting and hypo 1.5 years after. 

best of luck SiT and for telling me your experiences.