Hi all
ive been having immunotherapy, (Pembrolizumab/Keytruda) since last November for NSCLC stage 3b. It was every 3 weeks then in January they changed it to a double dose every six weeks, which I was very happy with as I imagined having more of my life back.
The normal for me was treatment on Tuesday, followed by being wiped out until Friday then starting to recover over the weekend. I would always go back to work on a Monday, mostly full time but occasionally shorter hours for a day or 2. After the first 6 week treatment I followed the same path, apart from on the Friday after returning to work I hit a brick wall in the morning & felt so exhausted to the point I thought I was going to crumple in a heap, making me tearful & consequently I had to come home. After a weekend of resting I felt much better.
My 2nd 6 weekly treatment was on Tuesday March 14th. Recovery followed the same path except instead of starting to feel more myself on the Sunday, it went the opposite way. For the next week I was so exhausted both physically & mentally I couldn’t function at all. It took all my strength to get out of bed & often I wouldn’t even get dressed plus completely out of character I was very down & weepy. I had a headache, flu like aches & generally unwell although I didn’t have a temperature so an infection was ruled out.
I had a consultation last Thursday & they think the double dose was too much for my body to cope with, so this Tuesday I go back to a single dose to see how I react to that, with the possibility of going back to 3 weekly treatments but I think they re waiting to see if my tolerance has gone completely. I have fibromyalgia & psoriatic arthritis, so I’m used to fatigue but not on that level! I’m having extra blood tests tomorrow to make sure nothing underlying is happening.
it’s my 60th birthday in 2 weeks with a big party planned, so I’m a little anxious in case it all happens again! Has anyone else had bad side effects when moved to 6 weekly & found normal recovery happens again once moved back to 3 weekly?
I should also add the treatment is working & the 2 scans I’ve had since starting Pembrolizumab has shown the tumours are shrinking!
