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Kidney cancer

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

1st line choices Pazopanib/Sunitinib or Ipilumab/Nivolumab

Buttercup19
Posted by

My husband has an appointment next week to discuss his 1st line treatment Paz or Sun has been mentioned by the consultant and she said immunotherapy is being avoided at the moment due to COVID 19, however, speaking to another medical professional today she told me to also look at Ipi/Nivo.

I would like to get anyone’s opinions if they have used either of these as a 1st line and how they got on with them, I’m aware everyone will get different results/side effects but just trying to obtain as much info as possible.

Also what questions should I be asking at the appointment in relation to options

Thank you 

Buttercup19 
latchbrook
Posted by

Hi

I'm not a member of this group but I noticed that your post hadn't had any responses yet and by replying to you it will 'bump' your post back to the top of the first page.

If you type the names of the treatments you want information on into the search bar in this group you should find lots of older posts which mention it.

I'm also tagging this group's Community Champion into my reply as she may be able to help you further.

As for what sort of questions to ask you may like to take a look at this information from Macmillan on making treatment decisions and also this on questions to ask your healthcare team.

All the best with whatever treatment your husband decides to take.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

buttercup01
Posted by

Thank you @latchbrook

. I missed this post obviously!

Sue

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
buttercup01
Posted by

Hi , buttercup01 here 

Many in this group are on Pazopanib, incl myself., So we mostly know about that. Also, my oncologist told me several years back that if Pazopanib stopped working , I'd  3 more oral drugs and immunotheraphy as back ups.

So I don't really know about immunotherapy as a first line drug, I'm sorry to say.

I know several ppl in this group are on various immunotherapy combos tho Make sure if you go for one you have back ups you can use  - a question to ask.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Buttercup19
Posted by

Hi Buttrcup01,

Pazopanib has also been mentioned but the ipi/nivo is getting good results so my hubby leaning towards that but will see what is discussed on Monday at WP.

Buttercup19 
buttercup01
Posted by

Any news ?

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Buttercup19
Posted by

Hi Buttercup01, He’s going to go on Pazopanib but he was taken into hospital yesterday for a couple of days due to low calcium & dehydration so can’t start it till these have been treated and resolved. 

Looking at posts a lot of people have a problem with high calcium not low so not sure what’s caused it!  

Buttercup19