Stage 4 Kidney Cancer, Combination Therapy-Nivolumab and Cabozantinib

My dad has stage 4 colon cancer with the exact same spread as you - lymph notes and lung but also liver too. He’s struggling a bit at the minute with keeping positive. Has a lot of Diarrhoea and bloating strangely because previously we were on movicol for constipation. How have you kept yourself positive? Really glad to hear you’re healing and therapy is going well 

I had my right kidney removed in May 21. I had a 20cm tumour attached to it.  I have been stage 4 since 2022 with it spreading  to both lungs, my liver and my pancreas. 

combined immunisation (ipilimumab and Nivolumab) didn’t work from me as the cancer carried on growing. I’m now on a tablet based treatment called Tivozanib and I’m 16 months in with it and it seems to be suppressing the cancer. I also have to take thyroxine too. 

the Tivozanib is one tablet per day for 3 weeks and one week off. So it’s a 4 week cycle. The side effects are similar to yours with diarrhoea, nausea, fatigue etc. 

hope your treatment keeps doing the job and you stay well for a long long time. 

I’m able to keep myself positive as I keep busy with family and friends although I can’t do everything I used to. I live in the country so can get out in nature almost every day. Just carrying on and keeping active as much as possible is the way for me. I’m 69 so guess your dad may be around the same age. Wishing him all the best

Diagnosed Nov 2021 with a 59mm kidney tumour spread to the lungs,  I did Jan 2022 - June 2024 on ipilimumab and nivolumab overlapping with a cancer vaccine trial (Scancell Modi-1) from June 2023 - June 2024.  My lung mets are no longer visible and tumour has been 23mm for many months now.  

I had lots of niggly side effects to the treatment.  Persistent thirst, nasal congestion were the most annoying.  Dry eyes and being freezing cold all the time also.  Too good a reaction to the ipilimumab causing kidney impairment and a pause in treatment.  It was very frustrating at the time but I can laugh about it now.    

Now,  my only annoyance is that my endurance is impacted.  I'm slower when running and cycling and the former so much hard work.  It's no longer as relaxing as it used to be and this is my biggest bugbear today.   Perhaps it's the C, the trial drug, perhaps just getting older (56).  

Bizarrely I think the trial alleviated the persistent thirst, dry eyes, and freezing cold.  You can read my blog here.  

A couple of oncos advised a prognosis of 5 years, but I've changed my tune on that and never ask now.  It's just a guess.  Reading the room is a far better guide and your room looks similar to mine.  

Strangely enough i recently been told my thyroid is extremely underactive although i had no symptoms and was put on medication. I also have 2 nodules on there which they are not concerned about even though i am. I wonder if it was due to the immunotherapy i had in 2023 after radical right nephrectomy for a 13cms tumour grade 3. Hadnt spread anywhere else until feb this year i was told there was a nodule on my left adrenal gland which had been removed and am waiting on path result.. my cancer doc dont think the treatment caused an issue with thyroid but im not so sure. Habe you asked about it with your docs?

I've just been put on imunatheraphy 10cm mass on kidney spread to lymph nodes and both lungs. My breathing is awful so hopefully the therapy will sort out my breathing I start on Monday tablet form every day. Then through a cannula every 6 weeks. I'm 56 the drs seem hopeful this will work. So scared  the beginning of march my life was normal now fast forward 5 weeks and here I am. What a rollercoaster x

It sure is a rollercoaster but this is some positivity with kidneycancer although it is unpredictable. I was fine on treatment so hope you are too. Keep the positive thoughts and good luck x

This is my first post so please allow for any awkwardness. I was diagnosed with kidney cancer in October 2024 which had already spread to lung (“tiny” according to my consultant) and the brain. I had a craniotomy in November, followed by six sessions of stereotactic radiotherapy during the Christmas/New Year period. I am now three months into immunotherapy treatment - nivolumab every four weeks and a daily cabozantinib tablet. Fourteen sessions are planned in total at this stage. Diarrhoea remains an issue, though not as bad as it was. Dry, itchy skin has become more of a problem. I generally feel okay, though fatigue after the craniotomy took time to improve. I need to be more active. The kidney will not be removed. I have CT and MRI scans next week with a follow up after that.  I am hoping the immunotherapy will allow for a fairly positive outcome at this stage. I am 74. Any comments would be welcome.

Well firstly welcome to our community  

You will meet people at many different stages in their journey. So many inspiring people who are always willing to share advice, pick u up when ur feeling down. They are a friendly bunch.

I think the itching and dry skin is a problem to many so someone will give u their experiences

Now it may not be your thing, but there is a forum for incurable cancer on here. People in there have lived with cancer for many years, had many different treatments each with different cancers. I mention this group because they communicate daily with each other. We talk about and share photos of our pets, some talk about holidays with their fatigue problems. There is also a hobbies page, there are knitters, vee keepers, card makers, painters, basket makers..many trying new things. 

This group is very cheering, makes u realise that life goes on and the support from all when waiting for results or having treatment is amazing.

This is all quite new to me too, 

Always here

Hugs

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