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HLRCC or type 2 papillary??

Skol2019
Posts: 1
Joined: Aug 2019

Hi, I’m new and looking to see if there is anyone else with HLRCC or type 2 papillary kidney cancer on this forum. It’s rare and difficult to find research, information, or others to connect with for advice so I thought I’d give this a try. I had surgery 3.5 years ago to remove tumor, kidney, adrenal gland, and part of colon. Tumor was massive, size of rugby ball. I had genetic testing done and learned through that I have the rare FH genetic mutation. At my 9 month Scan I learned the cancer had spread to several lymph nodes, then the liver, then areas near stomach and colon. It began to regress and liver cleared up. We thought maybe I was in remission, but at my recent pet scan 3 months ago it had returned and there are seven new spots. I’ve completed stereotatic radiation, nivo, tarceva and avastin, and now I’m back on nivo but have cabo with it. Seems like we are starting to run out of options. Any recommendactions or information would be appreciated. 

 

Thanks,

Amy

eug91's picture
eug91
Posts: 120
Joined: Jan 2019

Sorry you had to join us, but this is a great forum and hopefully we can be of some help and support. 

While I don't share your type of RCC, it doesn't sound like you're running out of options. There are many different treatments and combinations available now - depending on what's available in your part of the world. Don't lose hope. If you tell us more about - and maybe fill out your About Me profile - hopefully someone here with more info can suggest advice. 

Also, if you haven't already, consider signing up at smartpatients.com - another great recommended resource. There are definitely other papillary-type RCC posters there.

 

Manufred's picture
Manufred
Posts: 225
Joined: May 2017

Skol,

Sounds like you are doing it tough, but try to stay positive.

I understand that combined immunotherapy (nivo) and angiosuppression (cabo) is the most recent development for treating mRCC so you are getting best available, I'd say.  Apparently cabo is not as hard on people as Ipi (previously combined with Nivo) is.

Best Wishes, Fred

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