In my case pembrolizumab (keytruda) was the absolute dogs ***. Primary lung tumour shrunk right down, a few tiny lung mets all gone, lymph nodes back to normal. It's been two years to get to this point and they're not finished with me yet.
If I have any practical tips worth anything they are: 1. Do what the consultant says. Completely, to the letter. 2. Tell the consultant everything. Full disclosure, whether you think it's relevant or not. 3. Use the days between infusions to write down questions so you're ready to ask them when you're at the hospital. 4. Document everything and save it in a loose-leaf folder along with your letters, don't trust your memory. 5. Get your GP to sign you up to my.patientsknowbest.com
Oh that's wonderful to hear. So glad it's working for you. Thank you for your words of advice. My husband was diagnosed with metastatic oesophageal cancer in June 2018 had chemo for 18 weeks then chemoradiotherapy in Jan 2019 and had no evidence of disease in March 2019. The cancer returned last November and is back on chemotherapy which is a horrible treatment. I've looked up FDA approved treatments in the USA for oesophageal cancer and Pembrolizumab is 1 of them and I'm baffled as to why it is being trialled here for that cancer when it has already been FDA approved over there. I have found plenty of trials for Pembrolizumab and was going to try and get my husband on 1 of them. I hope the treatment continues to work for you. Thank you again for your message.
It does seem to be a good treatment, I've read a lot about it recently. Thank you Steve. We need to wait until he finishes chemotherapy before going on any trial. He has 11 weeks of it left and the oncologist has been liaising with a doctor at a different hospital to receive treatment there. A few of the pembrolizumab trials are being conducted in a lot of places around the UK so we will see what they say. Thank you Steve.
Congratulations, I have a very similar story to yours. Diagnosed with stage 3 adenoid lung cancer, pdl1 > 50%. I started pembrolizumab in combination with ramucirumab in November 2016 and the tumour had shrunk by about 75% by the 35th cycle after 2 years.
You say that they haven't finished with you yet, are you still receiving pembrolizumab after two years or something else?
Glad to read you've had what seems like an excellent response to treatment. There's quite a few of us on the site, hopefully there will be lots more as research comes up with more options.
I've got private health insurance so I'm not automatically taken off immuno after two years. My last scan showed that the tumour was still shrinking, my side effects are tolerable and my bloods still trend pretty flat so it was decided to continue treatment until there's no further improvement. I'm due to get my next blood tests on Monday 30th and get my infusion #36 on Tuesday 31st, all assuming that coronavirus doesn't throw a spanner in the works.
That is very good news that they are going to continue with your infusions. Like you, my tumour was continuing to shrink after 2 years treatment but since then I have remained stable.
I was on a clinical trial and was elegible for a further 35 cycles after my original 35 according to my consent form and I desperately wanted to continue.
However, the clinic maintained that the sponsor had withdrawn the continued access and no participants in the trial would get it. They told me that stopping treatment after 35 cycles was in my best interests as the immune system had been 'fired up' and the drugs would no longer be necessary.
When pushed, they then maintained that my consent form was somehow inexplicably 'inconsistent' with the trial protocol and also that the prescrption licence for pembrolizumab was for a maximum of 35 cycles.
I eventually took up the matter with the Research and Ethics Committee and am still trying to get some straight answers.
