Newbie question about pembrolizumab

Hi Robbbo and a very warm welcome to the Macmillan Community but sorry to hear about your diagnosis. 

Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot. (I have a completely different cancer).

This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support.

The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated Kidney Cancer Support Group.

This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support. To connect in with the group please click on the link below…….

    Kidney cancer

……. and once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.

You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.

You can copy and paste the text from this post into your new post.

The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial/work guidance or just a listening ear.

Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

Do get back to me if you need further help navigating the community.

Hello, I was diagnosed with renal cell carcinoma in November 2022. I had my kidney removed in January 2023 and started pembro alongside Axtininib (chemo tablet) in March 2023. I didn't want to know my prognosis but it was not good, I was grade 4 and told it was non-curative. My consultant said if my treatment worked I had a good few years, but was told to cash in my pensions. Here I am 2 years later and have been told my tumours are small and not expected to grow, my treatment has stopped and I have been told to live my life. I now (one month after stopping treatment) am getting more joint aches and tired. I had this throughout my treatment but nothing major, I feel it is a bit worse now. I am looking for anyone to advise how they are after treatment. I struggle to carry out heavy tasks without being sore. I feel very tired after doing daily jobs, like cleaning etc. I just wonder if this is how things will be now. I also have osteoarthritis of my hips, knees and ankles ( had this before). This causes. Me some pain and I have sciatica down my left leg which is quite painful. I am currently on the waiting list for an ankle bone fusion, but if anyone can advise if the tiredness becomes less, I would appreciate it. Obviously I am very happy with my prognosis and I hope this gives some people to have hope also.

Sorry on the question if side effects, I had a dry mouth, runny nose, bit achy, tiredness, itchy skin, ulcers in my mouth. I know it sounds a lot but it was all manageable