Swapping notes - effects of immunotherapy for Kidney Cancer stage 3/4

I should have added it's at stage 3/4

Hi Again :-) 

The first scan can be problematic/inconclusive and it's an attribute of immunotherapy.  Your oncologist will warn you about this in due course, or if required. Inconclusive - or pseudo growth I've heard it called, is when it can't be determined what's happening, or the tumour looks bigger.  This can be the start of the drugs just doing their stuff, totally normal and the shrinkage can take 6 months to be evidenced on scans.  

It can also be common for the first scans to show shrinkage and then the shrinkage to stabilise after the 2nd or 3rd scan.  That's what my oncologist told me.  

Everyone is different in how they react to ipi/nivo, even the same treatment for the same type of cancer can have different effects in two people.  I'm fortunate that my scans have shown shrinkage each time.  

Prognosis is a tricky subject.  There's been some good discussion on this in other groups on this Macmillan forum.  There are views on asking about a prognosis across the whole spectrum.  If you ask your oncologist for a prognosis it will be based on averages and historic statistical analysis and data.  Meanwhile treatment progresses, new trials appear. These statistics then, are never up-to-date with the current drugs on offer.   When you discuss prognosis with your oncologist when choosing your treatment, or before treatment starts, the onco has no idea how your body is going to respond to the drug, so you get a standard response or timeframe.  The next patient at the same cancer stage gets the same answer.  But the likelihood is that the two patients won't respond to the same treatment in the same way.  It's not an exact science - there's too many variables.  

Ipi/nivo was only approved for use in 2015 and for metastatic kidney cancer in c2018, so we're really at the forefront here :-)   

Bodger23 said:

we learn that the amount of treatment she receives is determined by how much treatment her body can sustain before taking a break. Is that the limiting factor.

Regions may give this differently, but mine does 4 cycles of ipi/nivo separated by 3 weeks each, followed by a 6 week break.  Then subsequent 4 weekly cycles of nivo alone.  I think this is quite a common approach.  

These cycles can stop if the body isn't tolerating the drug (side effects too troublesome) or of it becomes clear the drug isn't having the desired effect.  If the latter happens then an alternate drug may be tried.  Basically at this stage the objective of the treatment is to gain control.  Either shrink the tumours or to stop them getting bigger or spreading to new organs or new growth in an existing organ.  

If control is achieved then onco will suggest ways to maintain control - by continuing with the drug or even a "watch and wait" approach.  Most of the benefit with immunotherapy is in the first 2 years.  My oncologist explained we'll have a review after 2 years to decide options going forwards.  This is when "watch-and-wait" might come to the fore.  

This is how I understand it from the Q&As with my oncologist 

Thank You Mmum, very helpful. I now more understand the nature of the treatment and its aims. Best Wishes, Ron.

Hi just had a look back at this post . Great detail and breaks it down so we can understand it better. Thankyou for a great post

Hi Ronald

My treatment plan and frequency is exactly the same as Mmums, and my cancer has spread to he same organs as your wife's, plus a few more! After 4 sessions, my scan showed that my main tumour, in the right kidney, had shrunk by a third, so I am now on monthly treatment with just the nivolumab. I had another scan today, to see if the tumours are still shrinking. I am sure that your oncologist will come up with a suitable treatment plan for your wife. Immunotherapy has been effective for the majority of patients with renal cancers, and there are alternative treatments too. Good luck!

Hi Candysmum

Looking back, I wish I chosen a more imaginative anonym! Maybe it's my age 

Thank you for getting back to us, it's really helpful reading other people's experiences and like you, we have benefitted greatly from Mmum's detailed, forensic notes on her battle with RCC. Val had her second CT scan on the 4th March and we have to wait until the 3rdApril before we know the results. It's quite a wait, but we take the positive view that if the treatment wasn't working, someone would have said something! With the result will come a different treatment regime which mirrors your own, Nivo once a month. We're hoping that this will allow a bit of a respite, allowing as it does, a bit more time for Val's body to recover. There have been problems along the way, not directly on the cancer, but side issues, which are mainly a dry mouth, sore gums, some almost rash-like patches over her body, some hair loss, but, in general, she's coping very well - all will be revealed (hopefully) on the 3rd, I will post the results when we get them.

This forum has  been a great help, Best Wishes, All

Ron