Two years in..........what have we learned?

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Hello Everyone,

I've been posting on and off at various times with queries of one sort and another, so would like to bring you uptodate with my wife's experience of Stage 4 RCC. Her tumour is 71mm long in her left kidney with Mets going to her other Kidney, also Adrenal gland and a couple of Lymph Nodes. Naturally, this was a shattering blow, and all very strange to begin with. Her Tumour was diagnosed in January of 2002, but it took until June of that year to begin her immunotherapy.   She started her treatment with a cocktail of Ipi/Nivo for 4 or 5 months, followed by monthly infusions of Nivo alone; she had an MRI in April, and  a CT Scan at the beginning of May, so we are bang up to date as regards her current condition and learned on Thursday that her condition is "Stable Disease". We would have liked to have seen some reduction somewhere, but her tumour remains at the size originally diagnosed. That said, her oncologist said that he was pleased to see that her treatment is working.

When we attended hospital  on 20th June for her appointment, we were a little dismayed to learn that we were only going to see a Registrar, but were relieved towards the end of her appointment when her regular Oncologist came in and looked at her scans. The more appointments we had, the more we learned about the disease - despite this, we always seem to leave wishing we'd asked something else - human nature, I suppose. The one thing that we did learn from the Registrar was when we asked why didn't they remove the kidney, but he told us "we don't do that unless you experience a lot of pain, or you're passing blood". We thought it was to stop the Mets from shooting off in various other directions - maybe it does, maybe not. 

At one stage early on, when we asked what would happen if her treatment wasn't working, her oncologist told us that they had a number of treatments they could try, but we would cross that bridge when we come to it. He went through her blood test results and said he was very pleased with them - everything was  'normal' and both Kidney and Liver functions 'good'. He said that these tests showed that her body was coping well with both her disease and its treatment, also, he advised that she keep on with her dog walking etc, but "Don't overdo it!!"

Well, what have we learned? Kidney Cancer is cruel, but it is survivable. Immunotherapy works - how long, and how successful it is, really is in the 'lap of the Gods'. Don't ask the obvious question , "How long have I got?" - the answer can only be "Nobody knows", because everyone is different. Ask as many questions as you can, but trust your oncologist. Our positive experience has been echoed many times through postings on this forum - it takes a while, but every post I've seen mentions that their consultant was completely honest with them, and gave the feeling that they were truly trying everything to keep you well.

It's a bit of a ramble, I know, but maybe some new sufferers may take some comfort in knowing that this forum has helped us a lot and that it pays to share your thoughts. 

All Best Wishes, Bodger23  

  • Hi  

    Thank you for sharing, my wife's cancer is different to yours but similar in that she is in the position of being stable. It took a bit of time and care for us to get to the point of living with cancer rather than anything else and we have been on this journey for over 10 years now.

    We did not really twig that we were always seeing the consultant at first, until another patient who had only ever seen a registrar asked us what he looked like!. We saw a bit of a comfort in being "downgraded" to the registrar because perhaps it meant we were seen to be at less risk.

    Totally get your point about a prognosis, especially with my wife's cancer - at best an intelligent guess based on historic data and the average person - yet to find this average person.

    <<hugs>>

    Steve

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  • Good to read your update.  Best wishes to you both.  

  • Hi Mumm

    its not the best outcome but it’s put my wife in a far better place than where she was in January 2022. Thank you for your various postings - looks

    like you’re doing well

    regards Ron and Val 

  • Hi Bodger your wife has been doing well.

    Glad to hear it’s been going on since 2002 so it gives the rest of us some hope that we’ll last more than 3-5 years max.

    Bob

  • Hi Bob

    not to put a damper on it , it should have read 2022. That said, I’ve seen lots of posts citing 5 years + , which is about as long as immunotherapy has been on offer.

    humble apologies 

    bodger

  • Hi Steve

    ”ten years” sounds promising :-)  Sharing our various experiences helps

    regards 

    Ron 

  • No problem. Every day is a gift!

  • This is very encouraging to read. My husband's immunotherapy and chemo have been suspended after an unexplained neurological event. When we see the oncologist next month, we don't know what to hope for. To know that immunotherapy can be effective is good information to take into that meeting.