1 year on post immunotherapy

sorry to hear this mate. I have very similar side effects but I went further and got 2 pleural effusions on my lungs and pericardial effusion round my heart. My thyroid is knackered, currently on steroids, lethothyroxine, and mycophenolate for the issues. I am going in soon to get my lining glued to my lung so the fluid stops coming in. 

They still havent got to the bottom of it but 99% its the Pembro that has done it. My mental health through the kidney cancer, pembro etc has been fine. But its now starting to get to me but plodding along. 

Best of luck mate

Mythicdreamer said:

chemo has such a crappy survival rate for RCC

Spot on with this one!   

Welcome back.

I know what you mean with the fatigue.  I was lucky.  Mine improved when treatment started and subsequently when it was steered back on course, following a dip.  Also, I started a trial vaccine and this made me feel better, like normal again, too.

I haven't got any answers but this forum has been a huge support to me in the past, and I hope it can be for you too.

Hi, i am so new to all of this, its so scary. Cancer has been big in my family and my sister had a partial nephrectomy in 2024, she finished Pembrolizumab in September but it wasn't an easy journey. I already have thyroid issues,  im worried what it will do to an existing medical issue. Take care and thank you for sharing your experiences.  

Hi Mythicdreamer , I find your post interesting since I have also had almost all of the side effects you list.  And I agree about fatigue and insomnia being the worst.  Fatigue is the one I can't shake at all.  It seems to be getting worse, I remain on a targeted cancer therapy. Even during immunotherapy I could manage about a 5km walk.  Now I can barely manage 2km and housework is leaving me knackered.

I reluctantly agreed to a referral to our local hospice.  I also feel I'm not ready for that yet.  But the nurses based there came to see me and helped organise some supports around the house.  Now they just phone to check in each month.  I glad I agreed to a referral now.  I feel I've got someone else in my corner.

Happy to chat if you ever need it.

Best wishes.

Hiya Daisy, i too have thyroid, heart in fact lots of silly bits going hay wire.

I have wonderful support by phone or appointments etc and of course here. About all my medical stuff, so dont worry your oncology team has all the info

I have started doing my BP and blood sugars 3 times daily. Only nouget it's found is my distolic blood gets very high. Adjustments to heart meds has helped. 

I also get copies of my bloods off oncologists secretary to make sure I am also keeping an eye on my body too.

Me very fatigued too....not knowing my own body and brain anymore is stressful at times. But I carry on, try to smile...would live some ' get up and go '

Anyway love sent

Hi Daisy, I've just joined the community and I was looking for help on making a decision on whether or not to start the Pembrolizaumab immunotherapy.

like your sister I had kidney removed And I've been offered this course of immunotherapy.

to me the possible side effects far outweigh the small possible gain which the drug provides I've been advised it's only in the region of 4-5% benefit to the cancer vs these possible side effects.

I need to make a decision by early next week as to whether accept or decline the offer of immunotherapy What would you say your sister would have done with the hindsight now she's had?

thanks

Richard

Hiya Richard welcome to the group. When first diagnosed we are in shock and processing stuff is hard.

I too was given a low percentage and was not in a place to accept immunotherapy.

In my hindsight, maybe I should, who knows.

Only one person can make the decision .

However,  from my point of view I think I may have liked to have tried. But my brain was scrambled it all seemed so quick from diagnosis to losing a kidney then decision making 

I was so frightened of treatment but now I have no choice and I am on targeted treatment. Yes Richard I am doing very well. I still have fears but less now I have a pathway.

They gave me tablets for any severe stuff, ie anti sickness pills, mouth wash, moisturises for all the common side effects and can u believe I had no bad effects. Tiredness, yes, but manageable. 

If u decide to try immunotherapy, remember u dont have to continue if u dont like any of the side effects.

I am sure u have done ur research, but have another talk with the nurses on your team. They have your medical records and help u.

Only get ur info from British places, dont go googling.

It's early days Richard, take ur time. Phone ur team and have a chat. It's usually an answering machine and may take a day or so for them to get back to u.

Sending hugs 

thank you Fleabane, you are my very first reply

Your thoughts are very clear and concise and thank you so much for sharing that with me.

Richard

Just hope it's helpful.  Sending a calming hug

Hi Richard. 

I am speaking with an oncologist tomorrow about starting pembro therapy. I have personaly decided I am going to give it a chance. These is nothing to lose by starting it and see how it goes. My info is in my profile, so wont bore with the details again of my dignosis haha. The only thing I am concerned at now is reading all these side affects and hope I dont get many or if I do, then I guess I will managed them the best I can like others are doing well to deal with theirs too. Happy to support and chat or message anytime. Take care