My husband was diagnosed in June 2018 at the age of 68. Up until then he was very healthy and full of energy. He has no idea where he came in contact with asbestos but has always done DIY so thinks that is the source. He went through 6 rounds of chemo which was hard and only reduced the cancer a small amount. The following May he was told the cancer had progressed and following a lot of discussion agreed to go on the Confirm trial as this was the only way of getting immunotherapy on the NHS. This meant a round trip of 120 miles, twice every fortnight but we decided it was worth it. During this time he seemed clinically very well and the consultant was convinced he was getting the drug. At the beginning of the first lockdown he was told he was off the trial. This was very difficult - the hospitals were so busy with Covid and having had constant contact with the medical profession he was suddenly seeing no one. Very scary. One good thing was the fluid in his lungs dried up and after 2 years, they decided to remove the drain which we felt was a great step forward. Eventually we got an appointment with a consultant who could really only offer more chemo. We decided to go the private route and were referred to The Royal Marsden. The specialist there gave us the information and said it would cost between £10000 and £20000 a month. We felt we didn't have much option and as luckily we were able to afford a few months decided to go ahead. We were told the trial needed to be "unblinded" to see if he had actually had the drug and we were amazed to find out that he had actually been on the placebo. 40 trips to hospital for salty water but that was the risk we took! We were referred back to a local private hospital and had a discussion with the doctor there on 6th August 2020. Amazingly he said that the NHS had changed their policy and immunotherapy was made available on the NHS on 2nd August! We were now back to the local NHS hospital. So far he has had five months of treatment and the 3 monthly scan showed the cancer was "stable". Recently he has started to feel extremely fatigued and I wonder if this is an accumulation of the medication. We used to go to a support group but that has obviously stopped meeting due to the pandemic and it was so useful having other people to talk to. If anyone else is on immunotherapy can they advise whether it is normal to feel so very tired or is it more likely to be something more worrying?
