Immunotherapy/Pembrolizumab {Keytruda}

Hi I was diagnosed with a right upper lobe of lung adenocarcinoma stage 1,back in May 2019.I had the surgery which went well,unfortunately,within 24 hours I was admitted to intensive care with collapsed lungs,sepsis,delerium and others(the surgery itself had gone well and they were happy that they had got all of the cancer out).They had wanted me to have follow up chemotherapy,ut as I was so ill post op,I was not a candidate.

Then came covid and I had been doing well by the time I had a follow up in September 2020,I had niggly pains in my sternum and a ct scan showed up that the cancer had spread to my sternum and 4 sites in my right shoulder,I was told it was stage 1V metastastis to bones,I then had palliative radiotherapy on 4 occaisions that seemed to have helped.

In the meanwhile I was noticing (apart from sternum pain) that I was having pain on the good side of the left lung,radiating from under left armpit,back of left shoulder blade and round to the left ,under my breast.After another scan,I now have it confirmed that the sternum activity has increased as has both lungs.

I am about to start Immunotherapy (Pembrolizumab/Keytruda),which I can stop if I get severe symtoms.I am getting extremely good care and support,couldnt be better.I didnt want chemo and I am not sure that I would be a good candidate after my post op time in ICU.I also spent the whole of March this year on the Palliative ward,even allowed visitors,but my family were told to prepare themselves as I had double pneumonia and sepsis and wasnt aware or let off my hospital bed for 3 of the 4 weeks I was there.My family now call me Lazarus as I just suddenly picked up,helped of course with the amazing care I got.

However, I start my first treatment on 28th June with 4(if I can tolerate the side effects) 21 days apart.I am building myself up as much as I can,food and drink wise because really want to give it a goI am a little concerned though as this week the pain has really worsened and I am worried that I may not be well enough.I am seeing my nurse this week and can call the oncology day centre but the main reason I am writing this,is can anyone who has had this,let me know their experiences,good or bad.I am 62 and live on my own,although I have a lot of support I can call on,I am just wondering just how much to expect albeit we are all different

Thankyou for taking the time to read this and any experiences would be much appreciated

  • My husband was put on similar double immunotherapy treatment.

    The good news is that immunotherapy starts gently - so you will likely feel no bad effects on the day of the infusion, maybe even for some weeks. As your immune system responds to it (any time over the next 2 years after the treatment) you may start to get adverse effects, from your immune system over enthusiastically attacking bits it shouldn't - anything from a bit of itchy skin to problems in major organs. Many people manage 2 or 3 infusions before they have adverse effects that are too problematic to continue, with the double treatment at least. Even 2 or 3 infusions may be suffcient to have a huge effect. In people it works in, the efffects are nothing short of miraculous and can have no evidence of disease for years afterwards.

    The downside is that many do not get the desired effect, for reasons that really are not well understood. They may nevertheless get adverse effects that need managing, and a new treatment plan. My husband only managed 1 dose, before liver side effects required a new plan.

  • Hi 

    Your story is amazing!   So well done you.

    My hubby (58) was on 2 types of immunotherapy Atezolizumab plus bevacizumab (along with carboplatin plus paclitaxel chemo for 4 rounds) for 12 months in total 

    Side effects were worse with the chemo included, but for the last 9 months it was mainly itchy skin,  tingling in ends of fingers and toes,  tinnitus (possible the chemo caused this but he still has) but very little other side effects. He was quite well. The fluid around his lung still built up, but the main sickness,  diarrhea,  loss of appetite were all the chemo and stopped.  He has stage 4 nsclc with liver and spleen mets.

    After the year he did get progression of the mets, so now on a different path, but Good Luck on 28th!

    X