Immunotherapy

Hi Sports I am not a member of this forum as I have a different cancer, but am one of the community champions who has experienced immunotherapy as these drugs are used across a number of cancers. My experience is with pembrolizumab (Keytruda). If you can add which immunotherapy drug you are having, and also the names of any chemotherapy drugs it’s being paired then I will help if I can, and others may respond. Not all immunotherapy drugs work the same way. 

• Thank you for coming back to me.  I am also having Pembrolizumab (Keytruda) that is all I know at the moment.  

I had pembro with NAB-Paclitaxel in 2023. I was meant to have it for up to 2 years for triple negative breast cancer that had spread to my liver. I had 6 infusions and then had to stop due to toxicity. However it shrunk my liver lesions considerably, they stayed stable for the next 6 months, I then had an ablation on the remaining masses and have remained in stable remission since. It’s now about 31 months since my last treatment. 

I am not sure whether they have explained how it works to you. It’s a PD-1 inhibitor. For you to be eligible, your cancer (like mine) expresses a protein called PD-L1. PD-1 and PD-L1 bind together to shield the cells from the immune system. It’s how our bodies keep our endocrine system and critical organs safe from excess immune system interference. Our tumours are mimicking this in order to hide. It’s like they have a big Harry Potter invisibility cloak wrapped around them. So pembro breaks this down with the theory being the immune system can then work on the cancer. When it works well, as in my case, it can be extremely effective. The drug works systemically so it breaks the bind everywhere. The long list of possible issues you have read about are the sort of things your immune system might do. I got kidney damage, lost thyroid function and some pneumonitis, which is why I had to stop treatment. All of those were resolved through steroid treatment plus replacement thyroxine. 

For me it was an absolute game changer. I feel it saved my life even though it brought some serious challenges. 

I also suffer with vasculitis which is an autoimmune disease although I am now in remission.  This is what also worries me about the treatment.  I think the vasculitis team need to get together with oncology.  Does this seem feasible to you? 

Hi Sports 

I suspect the issue is that even if you can get them to talk to each other, they are different disciplines, neither of them knowing much about the other’s specialism. My own experience is of departments making paper referrals to each other. I can understand your worry! 

Hi Sports,  I have been on Pembrolizumab, every 6 weeks, for 12 months of a 2 year palliative course for colon cancer.   I also have to deal with a blood disorder which is handled by haematology.  My hospital experience is very positive as oncology immediately pass relevant scan or side effects to haematology.  Just be sure to discuss your concerns with your oncology team.  I have thankfully been extremely responsive to pembro, and within the first 3-4 treatments the lymph metastases had gone.  A further 4 treatments, and my tumour is already shrinking.  My side effects are minimal, and I feel incredibly well.  Just had 3 weeks holiday in Spain, something I never thought was possible a year ago.  Good luck, fingers crossed for you!  

Thank you for your message.  I am so glad to hear that you managed to have a holiday.  I was wondering how I will feel after my first session.  I am due to start very soon now so a bit apprehensive . Take care

This is really reassuring to hear.