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Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

anyone feel better after first nivo/ipi infusion

Liv52
Posted by

Hi RungRed

i hope your husband is doing ok. We saw the oncologist today after my husbands severe reactions to the immunotherapy. She says it is best to stop treatment for 2/3 months before trying any new treatmeNt. 
He finishes his steroids in a few days. Has anyone else been given a treatment break and how did it work out. He has mets in his liver and lungs. 
Thanks for any comments/advice xx

Liv52
nomad19
Posted by

Hi Liv52

 I'm new to the group, found you online and even though I'm from the other side of the pond it seem like you are all people I could relate to . I am one week post my first course of ipi/nivo, I can't really say I feel better but I clearly don't feel worse. I know the side effects may show up weeks later so I am keeping my fingers crossed. I was disease free after stage IIB disease for 11 years and on my 11th anniversary they found in on my pancreas. All the recent studies show that ipi/nivo offers the best hope for a real remission . My oncologist is one of the doctors who worked on the study and he even spoke to me a about treatment breaks saying that even if you only got one treatment in you could see lasting benefit and no one really knows how taking a break works because their protocol wouldn't let them

Have strength even when you don't think you  have it and believe in tomorrow

Nomad19

TheRungRed
Posted by

Dear Liv,

My husband is doing ok, thanks. He had his final ipi/nivo treatment at the start of feb and now has the single treatment of either ipi or nivolumab (can’t remember which one) for the next two years. He had the same issue has your husband. He had to take a break for two months till his liver function was better and then they restarted treatment. He had to take steroids for the whole of January which  was the worst experience as it put him on a real downer. But since he’s been back in treatment he’s been well. The only concern for us was not knowing what the cancer was doing whilst he was on the break but the oncologist told us that the immunotherapy is still doing it’s work even though he had to take a break. 

I hope you yourself are keeping well and remaining positive.

take care xx 

Liv52
Posted by

Dear Rung Red

iI am so pleased that your husband is doing well . We are still on our break and my husband has been very ill. He is getting palliative care at present which is helping with his symptoms. He sees the oncologist at the end of March. 
Very best wishes 

Liv 

Liv52
Liv52
Posted by

Dear Nomad 
I hope you have success with your treatment. It is a miracle worker for many patients. 
My husband is still staying positive and we are still hoping for a better future 

Best wishes 

Liv 

Liv52