Immunotherapy with Pembrolizumab

Hi Les, I am on pembrolizumab also but for a different cancer (lung and lymph nodes) I have had 6 cycles so far and side effects have been very mild! Occasionally feeling a bit of fatigue but nothing major. I know we all react differently but I and another person on it find it very positive. I hope this helps you and that if you decide to go ahead with it I hope that you’re experience is the same. Enjoy your day and stay positive 

Hi Sharon

thank you for the info, and I hope your treatment goes well 

Les 

Hi Les,

I had a partial nephrectomy October ‘23 which confirmed a primary cancer and then scans/biopsies in February 2024 revealed secondaries in my abdomen. I’ve been on Pembrolizumab since May 2024, six weekly. The thing I noticed most with the pembro is fatigue and some abdominal pain for a couple of days post-infusion (this may be because of the location of my secondaries).

I’m also taking Lenvatinib 14mg daily - I could not tolerate the maximum daily dose of 18mg as the side effects got worse but according to my oncologist not a lot of people can manage top dose. It’s hard to say exactly whether my side effects are from the Pembro or the Lenvatinib, and I have ended up on a few additional medications as a result, but my follow up scan in September showed massive reduction in tumour size, so I’m taking that as a win.

Sorry if this doesn’t help much :) Hope your day goes well and others can share some positive feedback with you 

Amy xx

Hi Amy

any info is a great help and I’m glad that you have a reduction in size, hope you have a great day

Les

I got a rash while on the perm rock. They added an oral called inlyta.  That was terrible for me. Skin stuffed off my private area. I was a walking rash.  I am now on opdivo and I tolerate it very well. Until this week.  My immune system is attacking my colon.  May have to find new treatments 

Hi Les, I have just finished my course of Pembro. I have felt tired at times and had less energy. Luckily I don't work - I had just finished a job before my diagnosis and operation. I volunteer for a couple of hours twice a week in a local charity shop and I help my mum out quite a lot and that's as much as I can manage. Most people seem to get some fatigue from what I have seen but some still cope with working. Everyone's situation is different. You don't say what stage or grade your cancer was - I was stage one as the tumour was about 5cm x 6cm and contained in the kidney but grade 3-4 as it was an aggressive type. and therefore quite a high risk of returning at some point. This is why I had the option of having Pembro. I weighed the risks and decided I should do everything possible to protect myself from it coming back. I also have CT scans every 3 months, which will continue for another year and then it will be every 6 months I think. There are some possible serious side effects and they do sound scary but if you get these, they can give drugs to address these. If you have other questions, let me know. Best of luck with what you decide! 

Hi again, I forgot to say that I started to get a very dry mouth after 2 or 3 treatments. But I manage this with mouthwashes, chewing gum and sipping water. It's a bit harder to eat certain dryer foods but you can live with it. I'm hoping it will normalise soon now I have finished the treatment!

Hi Starlady

thank you for the reply, I have opted to do the Pembrolizumab, so fingers crossed, hope your well

regards

Les