Pembrolizumab possible side effects

I've just had 2 chemo and 1pembrolizumab so far. Skipped one of the immunotherapy because of a rash I developed which needed steroids. Also I got a nasty case of oral thrush which is being treated. You've been going a long time so I hope it settles down for you. It seems that there aren't many on the Pembrolizumab so I'm sure those of us will help by sharing experiences. Good fortune to you. It gets hard sometimes but my usual escape of a bottle of wine is not available due to thrush. It's not fair......! 

Thanks for the reply, wine is my answer too so hopefully once you've cleared the thrush you can have our remedy too x I can only have Pembrolizumab until January as they only let you have it for two years so not sure what will happen then 

hi vixter, well done to be nearly at the end of treatment ( i am at about 13 months)    after the 2 yr it is supposed to keep on working. a usa study has been bril.    see if i can rack it up. TC     https://medicalxpress.com/news/2019-06-immunotherapy-five-year-survival-people-advanced.html      there you go.

Thanks for that Derek

I do stay positive about the future and don't plan on giving up. Hopefully my cells will continue to fight after the treatment ends. I hope you are doing well on pembro. I have been stable for a year so I'm quite hopefull XXX

Vicky

thank you Vicky. for some reason unknown to me i was put on Atezolizumab it seams the same as pembro. TC

Hi Vicky, I'd definitely mention it at your next appointment. My dad was about 11 months into treatment and he got loose stools which after a few months ended up in quite a severe case of colitis. He hid how bad it was from everyone as he thought it would stop his treatment but it didn't go away. As it was so bad they did stop his treatment. The immunotherapy was damaging the colon. It may not have meant a stop in treatment had he had it treated earlier.

That said the last 2 scans since are still showing the tumours shrinking. The link that has been posted here is well worth the read.  I was stunned that rather than just maintaining things, without treatment the results are still getting better. It's still working.

Best ask those who know if you have a good consultant.

Hi

Thank you so much for that info I am seeing my consultant who is very good about the last week of September but I'm at the treatment unit next week so may speak to my nurse, I know that Pembrolizumab can effect the kidneys so I think it needs checking out. Great to hear that things are still looking good for your dad. Hope it continues to. 

Vicky

I hope it goes well Vicky and fingers crossed it is just an infection.  Your body might react differently to things in general now as it's gone through a huge change. xxx

Hello Vicky,

i have had some experience - 9 months of this. First of all I am not medically trained so can only give my experience

i am on immunotherapy and last Christmas I started getting Cystitis. Eventually having to go to the GP for treatment / it worked for a few days and then I was back to being itchy and feeing as if I Had a UTI - this continued for four months.  Eventually the GP examined me and I had some thinning on the skin so was given some cream but the cystitis continued - in total I had 15 sets of antibiotic - I was testing positive (sometimes inconclusive) for UTIs  at which point I demanded a referral to urology. I contacted my consultant who did not appear concerned about it and didn’t believe it was related to my cancer but supported an urgent referral  to Urology as my quality of life was affected

After my second urology appointment I was put on a low dose antibiotic every day and have had six weeks of no UTI and feeling comfortable again. 

I had a scan at urology and have a red patch on my bladder which they believe is due to infection and they think I am not draining my bladder properly which is common when you get older (I am a few years older than you!) this can be a cause of infection.  

I am going back for a test to see if this is the case.

my advice is to go to the GP with a sample and explain your circumstances. You are better to catch it early if it is a UTI and if it continues ensure you ask for a referral to oncology.  

Hope you get it sorted and let me know how you get on 

Cx 

Hi Claire

Thank you so much for your reply, I hope things improve for you on a regular daily anti biotic. I did explain to my gp that it was important that I got something urgent due to my situation but she still insisted on waiting for urine test results which didn't come back for 8 or 9 days by which time I had been to oncology with a sample and was given three days of antibiotics,. Then after feeling a bit better for 24 hours the UTI was back with a vengeance. I ended up going to the walk in centre at the weekend and got a weeks course and was told to buy some potassium citrate liquid. It worked well and I've since got a second bottle and at the slightest sign of a reaccurance I take the liquid which seems to be keeping things at bay. I saw my oncologist last week and he wasn't concerned and said it was just a urine infection. I understand that his priority is my cancer but if it continues I am going to insist that I see a urologist. I'm really grateful that the Pembrolizumab has so far kept my cancer at bay but it feels like each time I have my treatment i have problems with different issues.

Thank you so much for getting in touch, I feel less alone with this now.

Vicky