Advice please

I had a full nephrectomy and immunotherapy was mentioned, but I had been told many years ago that I had the beginning of an autoimmune disease...the oncologist suggested I didn't start immunotherapy at that time.  I was happy with that advice.

However, 9 months later they found lesions, very very small in my lungs and adrenal glands.  Would the immunotherapy have stopped this happening? I just don't know. I am on surveillance 3 monthly. They wont to give me any therapy until they see the growth rate. It won't be immunotherapy it will be targeted.

Now don't let this frighten u. Although not curable I am informed it is very treatable. I am blessed with good support. And I do trust my medical team.

My advice would be to discuss it with more people who have had treatment and then go armed with this information when u next see ur oncologist.

Whatever u choose I wish u well

Sending hugs  

Hey shep77. I had radical right nephrectomy in june 2023..13cms tumour grade 3. I took immunotherapy for 1 year as mentally felt better doing something rather than nothing. No side effects shown at the time. 3 months ago a nodule showed up on my opposite adrenal gland which was removed . Apparently it doesnt mean treatment didnt work but it may have stopped it going elsewhere so i was told. Recent scans showed 2 nodules on my thyroid which apparently are harmless and my thyroid was underactive although i had no symptoms and it may have been caused by the treatment so just took pills and it is now in normal range. Recent scan was clear so fingers crossed. If i had choice again i would still have immunotherapy but its a personal choice. Not many people get side effects i believe and if you did you could stop taking it anyway but good luck and if you want to ask anything else, messagr back

Ty  Doris your reply has also settled my mind, so I thank you.

I hope ur are well

Sending hugs  

Im glad.im very well thsnks

 Good luck to you x

I have a 13cm tumour on my left kidney which is currently inoperable due to size and location. 

Because of this it was decided to go down the immunotherapy route. I should have started on the 7th of April but my BP was too high. Extra meds were prescribed and BP came down sufficiently to start on pembrolizumab on the 28th of April. I have had no side effects.

I was supposed to have this in combination with a targeted therapy drug called lenvatinib but this was withheld until BP came down more.

I was given my initial pack of lenvatinib on the 12th of May and took the first dose the following morning. The next day my initial BP read was 170 over 100 which frightened me. It did come down later in the day but I was wary of taking more. I took the next dose 2 days later. My BP went up to 160 over 102. I haven't taken them since.

My BP is currently averaging 134 over 85 in the morning and less at night which while not perfect is good enough so I am going to start the tablets again tonight. My theory is that taking them at night may work better as regards BP.

In conclusion immunotherapy has caused no adverse effects but the targeted drug has been more problematical. I hope this helps with your decision.

All the best.

I have stage 4 RCC spread to the lungs.  Too late for a nephrectomy for me.  I'm hardly impartial but I would take the immunotherapy.  I was on ipilimumab/nivolumab and my lung mets are undetectable and the primary tumour down from 59 to 23 mm.  I had niggly side effects, nasal congestion, dry eyes, impaired kidney function due to too good a reaction to the immunotherapy.  

You can always start and see how you get on, although some side effects you can't backout eg my impaired liver function.  

It's a tricky decision but you will never know what the alternative choice would have delivered.  The important thing is that you are comfortable with the decision you made.  

Until about a year ago there was no adjuvant treatment for RCC.  You just had a nephrectomy and hoped for the best.  In that way RCC is way behind many cancers where there may be RT, drugs to stop a return.   But then it's also known that we over-treat some cancers, disproportionately relatively to the risk - I'm thinking breast cancer here.  Hannah Fry did a documentary on it.  There's no easy answers and no one-response-fits-all. 

Wishing you all the best.  

Thanks for sharing,  that helps alot

Hi Librarian,

I have my biopsy consultation and I saw my very large lesion on the screen.

You wrote  that yours was large too, and of this reason there was no op, they started immunotherapy.

I'll be very happy this kind of decision, because I am 71+ y old with COPD, Asthma, type 2 borderline diabetes, so I am not too fit.

I'll have my biopsy in 6 days, and may have my consultation team then.

Your story gives me hope about the procedure, maybe no op!

get well and hugs!

Marigold

Hi, Fleabane

I had my biopsy consultation today, I saw my very large lesion on the screen.

Biopsy will be next Thursday, and the future starts from there.

I my have skip op because of the overly big mass.

Have a lovely long weekend.

How are you dear?

Shep, I take advice from my oncology consultant very seriously as he knows far more than I do about cancer. I have learned,too, that feeling fit and fine doesn’t necessarily mean that my cancer is gone. My op was in 2020 and all my scans had been clear until one wasn’t last year. What followed for me was radiotherapy on a lymph node. If you have been told that your cancer was aggressive that is something to definitely bear in mind.