Kidney cancer and immunotherapy

Hi Lynsired and a very warm welcome to the online community

I'm not a member of this group but I noticed that your post hadn't had any replies yet. By replying to you it will 'bump' it back to the top of the discussions list where it will be more easily seen. 

I'm also going to 'tag' buttercup01 as she looks after this group and should be able to help you further, either through her own experiences, or by pointing you in the direction of others who might be able to help.

While you're waiting for replies you could use the search facility in the group to look for previous posts which mention things that you're interested in. For example, if you type in 'immunotherapy' it will bring up any posts which mention this.

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Hello @lynsired

SorryI missed your original post : I'm struggling to get to grips with the new site, which means I don't check it as often  as I used to!

A second welcome to the group btw!

Thanks to @latchbrook for spotting the post.

I've no experience of immunotherapy myself, being on a TKI instead - Pazopanib.

I know  is on immunotheraphy for a brain  met, having had gammaknife treatment before that.

I also know Ian436 has a met on his pancreas, but instead has opted to take Pazopanib.

How have you found the immunotherapy and what meds is it or a combo of two?

As latchbrook said, you may find more posts if you search under immunotheraphy within this group.

See Steveb4793' s post from 5 months ago.

Hi Lynsired and all on here, sorry not posted for a while, Please read my post with my history of metastatic renal cancer, I am still on immunotherapy namely axinited and avalumab which is now seven months, my last scans (June) all came back clear so very happy with how its going, side effects are better and apart from fatigue and occasional headaches and sometimes having to dash to the toilet I am coping well. I have just been for my 3 monthly scans today (MRI for brain and CT for body) so its the anxious wait now for results, I will post on here when I get them.

Best of luck

Steve

Hi Steveb4793, thanks for update. Hope it helps Lynsired

Sue

Hi Steve4793

I also have matastatic renal cancer, I had my left kidney removed they also had to take my spleen out as it was attached to the kidney, I also have cancer in my right kidney for the last five months I had been on Nivolumab immunotherapy, but last month my scan showed that it had cleared the spots on my lungs, but had not done anything for my kidney, so I have now started taking cabozantinib, which I have been on for the last four weeks, can you tell me if you have heard of this treatments not working or has anyone else know.

Thanks 

Thanks all and hi Sandra 55. I am on Nivolumab 11 months now and the last scan showed the cancer was stable. 
Cabozantinib is the next thing if I need to change from the immunotherapy are you going to have both? Would be interested to know how it goes with the cabozantinib.

All the very best

Lynsired

Hi Lynsired,

 I am only on the one now, I should of had two lots of immunotherapy but some times you have to be hospitalised, so because of Covid-19 I did not get both, so far so good with side affects, but I will not know if this one is working until I have my scan

Sandra 55 said:

so

Good luck Sandra I have a scan next week it is a tense time isn’t it? You just have to carry on. 
Hope you get a good result with the cabozantinib 

Lynsired