HLRCC or type 2 papillary??

Skol2019
Skol2019 Member Posts: 1
in Kidney Cancer #1

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

Comments

  • eug91
    eug91 CSN Member Posts: 471 Member
    #2
    welcome-

    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
    Manufred CSN Member Posts: 241 Member
    #3
    Combined therapies

    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

  • Ria786
    Ria786 CSN Member Posts: 3 *
    #4
    https://csn.cancer.org/discussion/320379/hlrcc-or-type-2-papillary

    hello… I just signed up to gain more information about HLRCC. I was diagnosed with HLRCC in 2021 and had a radical left nephrectomy. I’m under active surveillance through MRI. I’m a Sonographer and I often scan my right kidney to make sure there is no neoplasm developing, however I’m seeing echogenic foci in my right kidney since last last two months and it’s quite concerning since before my left nephrectomy I also developed multiple echogenic foci in my left kidney. I believe the disease process start with these echogenic foci. I have my MRI on June 10th and then my oncologist will decide how to handle it.
    Can I ask you, how are you doing now? Any improvement with the use of the therapy? By any chance, did your radiologist find any such findings such as echogenic foci in kidney??

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