New here

Good afternoon, Pauline. 

Firstly I would like to say welcome. I am one of champions and also have kidney cancer. My information is in my profile. I see you have already joined the Kidney cancer forum. There is many people in this forum who I am sure will help and support you. 

It is a difficult to decide whether further treatments are worth it. My cancer was clear cell and high chance of it growing somewhere else despite them removing the all the cancer and kidney. 

I personally decided to have pembrolizumab and started this 3 weeks ago. I have to go 6 weekly and 6 month scans too. I am being closely monitored and feel I have made the right choice for me.  The side effects are scary when they tell you about them. I know it made me have a good think and weigh up my options. 

I had my surgery in December and still off work  and planning returning mid April. So I am taking my time, recovering well with no serious issues. I get the fatigue, sleepless nights at times, numbness around the surgery site (open surgery) with a 36 cm scar. 

I am here to supprt and help you every step of the way. You are not alone in this and the way you are thinking and feeling is very normal. The information here is about immunotherapy which you may find useful too Immunotherapy for kidney cancer

If there is anything else I can help with or any questions. Let me know and I will do my best to help.

Take care. 

Jamie  

Hi Jamie thankyou so much for your reply. Ive seen the side effects and they are worrying me, I just want to do anything possible to stop it returning but then I also don't want to have anything else due to the injections. Im going to see someone at christies In Manchester to talk through it all so I think I will decide then what to do. Thankyou again

I just thought to myself, all medications carry side effects. Some people get them, others dont and some get the odd ones. However, its all a personal choice and never a straight forward answer or decision. 

I am pleased you are going to discuss this more and you are really supported and monitored throughout. So far the most I have had is feeling cold at times, and a little joint pain. All manageable at present, so fingers crossed this will continue. 

Please let me know how you get on and what you decide, and do use the forum for other support whilst you recover too. 

Best wishes, 

Jamie 

Hi - I agree, reading the leaflet about the possible side effects is scary.  But, you won't get them all.  You might get one or two.  They are obliged to tell you about everything you might incur, above a certain threshold.  Saying that, I only got niggly rare side effects (it was another immunotherapy, not pembro) that weren't in the leaflet.  

Hopefully that's all.you have to deal with. Like you said everyone is different and all medication have side effects. I will let you know what I decide. Thankyou so much for your reply. Take care 

Hi thankyou for your reply. I'll have a chat with the macmillan nurses and then decide what to do. it is a worry but hopefully they can advise me on the best way to go. Take care