I have been receiving Pembro for 6 months for stage 3 melonoma. I get very tired after doing even low level activity and I have a very dry mouth, so I have frequent rests and a nap in the afternoon, I also have water handy at all times. When I go out I take a small bottle of water with me, a also use chewing gum, not something I normally do, and find this helps. I also have a rash in some areas. All in all it’s not too bad,just get a bit fed up with it. I had difficult making the decision to have it due to the horrendous side effects we are told can happen but I think they are rare. I believe now it was the right decision. It probably take a few weeks for these side effects will start but you will be lucky if you don’t get any. Besst of luck with it. Let me know how you get on.
Hi. Can I ask, as it affected your legs? My husbands legs feel heavy & can no longer walk outside due to not feeling safe in case he falls. This as started in the last 2 wks & his 3rd pembro is next week
not my legs as such, but I am not quite as stable on my feet as I used to be. Turning and bending also makes me feel slightly dizzy. Normally I walk very well for an 82 year old but I do find I trip or stumble especially on uneven ground. But none of it stops me getting about and I do have to rest frequently. Hope this helps.
Hello Tony82, I am seeing the oncologist today to discuss starting this treatment for the melanoma, pembo has been the one mentioned by the cancer nurse.
I am so unsure about starting it because of the side effects some sounds extremely serious.
It was good to read your post, I know people vary with side effects.
I hope it helps. They do seem to monitor you quite carefully. I have a blood test and a telephone discution or face to face a few days before my 6 weekly treatment. You can discuss what side effects you are having and if they think it necessary will stop the treatment. They do scare you don’t they but I think they have to give you the worst case scenario no matter how unlikely. Incidentally have you looked up the cost of Pembro, even to the NHS, it’s horrendous.
I had Pembro alongside chemo for breast cancer in 23/24. When I had Pembro alone, the side effects weren't too bad. Fatigue was the main one and I did have quite a bad allergic reaction to it at one point but it was resolved after a few days in hospital (it was pretty bad and quite rare). Oddly it didn't happen again (this was quite early in my treatment) and I got through the rest of it fairly unscathed.
However, I had my last treatment in November last year and then it impacted my kidney function shortly after, but I was unaware until it got so bad I ended up in hospital. This is also rare and I've always been that 1% during treatment! I'm not writing this to scare you, I just wanted you to be aware. They do test your kidney function before each treatment, but it was after treatment that my issues began. After a couple of weeks in hospital and a course of steroids, my kidney function has returned to almost normal, but not as good as it was prior to this incident. They are monitoring me closely and I have blood tests each fortnight to check my levels and Nephrology appointments every 8 weeks. Just keep yourself hydrated (around 2 litres of water per day is recommended) and watch out for severe dry mouth, inability to pee or poo and extreme fatigue where you can barely get out of bed. Also I had a severe loss of appetite (which is totally unusual for me!).
Again, not wanting to worry or scare you, just to raise your awareness to what to look out for and hopefully you will avoid the situation I was/am in.
All the best with your treatment. I'm sure you wish smash it :)
You certainly have been through it with two hospital admissions.
I am not drinking enough water and have upped my efforts immediately, it makes sense and is more relevant because I have kidney cancer and have had a partial nephrectomy.
I am very grateful for the personal feedback, and it obviously helps massively being pre warned.
