Hello, I’m new here

Hi, it sounds like you are going through such a lot. I myself haven’t had immunotherapy but there are many lovely people here who are having various treatments. From what I have learnt from this forum treatments have really come on in treating all stages and types of kidney cancer. I am sure that one of those members will response with advice, Please do not give up hope. Please continue to post ask any questions you have. This is a very caring forum with amazing people.

Hi seasidemum, it’s nice to hear from you even though it’s in these difficult circumstances. I have Stage 4 Kidney cancer with lung mets, diagnosed April this year. I’m on immunotherapy x 2, nivolumab IV every 4 weeks and Cabozantinib Tablet 40mg once a day. I have some side effects but after 3 months tumors everywhere have slightly reduced in size. So not just stopped growing but reduced very slightly. I have my 6 month scan on the 11/11/24 and we will be able to see where I am up to. Please try and keep as calm as possible, that’s not an easy task I know. I try hard everyday to keep calm and positive in the hope to have as many years as possible, and you never know, miracles do happen. 
if you need to chat or vent then this is the place as we are all in the same boat. Good luck, take care and speak soon X

Thank you so much for your reply. How brilliant to hear that your tumours have reduced already. I’m trying my best to stay calm and positive but there are times when I just go down a hole and it’s hard to get out of it. Stories like yours do give me hope though so I will definitely keep reading and posting!

Thank you so much for reply. It’s good to talk to people who really get it. I will continue to read and post. 

Hi

I was diagnosed with KC, spread to the lungs, in Nov 2021.  I have been on immunotherapy from Jan 22 - June 24 and I am in Dunfermline, Fife .

When I was diagnosed my young people were 21 and 18.  My daughter had just started at Strathclyde Uni and my first target became "got to see her graduate".  Your post resonates.  

Right now is the worst time with all the uncertainty and waiting.  But it does improve over time.   Do keep posting - you'll find loads of support here. 

You can read my blog here.

Hi there

Thanks so much for replying  

I have read through some of your earliest blog posts and can’t tell you how helpful it has been. Your positivity and brilliant attitude just shines through. It makes me feel like I need to get my act together because since the diagnosis I have been allowing myself to wallow in it all and that needs to stop. I will keep reading.

We do have a fair bit in common apart from the KC!

I see you had some treatment at the WGH where I am being treated. 
My youngest has just started Strathclyde Uni

We spend most summers in France (Alps) as my husband is really into cycling and the Tour de France. Hope this will be able to continue if I can get travel insurance

I will definitely keep posting.

 from across the Forth!

 Best wishes.

Hi, I'm also on the east coast of Scotland

On May 14th 2024, I was diagnosed with Stage IV kidney cancer, which had spread to my lungs and then via the salivary glands, causing a golf ball sized tumour on my left jawbone.

The cancer was incurable, and had advanced beyond the possibility or radiotherapy or chemotherapy. My consultant was clear in his prognosis - I was critically ill and had 12 months or less to live.

Over the last few months, I've been undergoing a trial treatment at the Edinburgh Cancer Centre which combines two different drugs:-

Nivolumab, an immunotherapy drug which works by blocking a protein that stops the immune system from working properly and attacking cancer cells. It also helps to make your immune system find and kill cancer cells.

Cabozantinib, a type of targeted cancer drug which stops cancers from growing their own blood vessels which supplies it with food and oxygen to grow, and also blocks the messages that tells the cancer cells to grow.

After 4 months of treatment, I am now almost pain free, and able to live a near normal life as I continue to receive treatment at the Edinburgh Cancer Centre. There is no doubt that the NHS has saved (or certainly extended) my life.

Like you, my cancer came as an enormous shock. I had no renal symptoms, but like you I'd just had this unexplained crippling tiredness - for ages I thought I might be imagining it.

I've been going to see a psychologist at Maggie's in Edinburgh which has really helped with my mental health.

My 3 month scan showed my main tumour had shrunk by 40% after just 12 weeks of treatment. 

Still a LONG road ahead but it feels like at least there is hope for something better than my initial prognosis. You have to keep positive and force yourself to not accept the limitations that others might put on you. Keep your chin up!

That’s really positive news I am so pleased for you. Your journey has given me some hope.
Thank you for sharing. 

Keep that hope! Don't worry too much about the side effects - I was told there were 172 different things I might get, and reality is I've got off very lightly. Swerved nausea, vomiting, diarrhea completely. Things I have suffered are pretty minor in the big picture of things!

Hey, I’m in a similar position to you. Have gone through the immunotherapy (which wasn’t very pleasant) but it didn’t work for me. So now I’m on a drug called Tivozanib. I have been on that for 11 months now and the side effects are minimal and I just today had a check up at the hospital and it still seems to be suppressing the cancer. Defo give the immunotherapy a good go and I hope that it works well for you. But don’t be down if it doesn’t work as there are other options that are effective and will give you more time. Cheers and good luck. Simon