• 5 replies
  • 62 subscribers

Hi everyone, first post and not sure where to start…

I have HLRCC and underwent a partial nephrectomy in October 2023. Clear margins post-op and thought we were doing well but my CT/biopsies indicate secondaries in my abdominal wall. Due to start SACT (Lenvatinib and Pembrolizumab) next week…if anybody can point me to other posts that might be useful I’d be teally grateful.

TIA x 

  • Hi Zofia,

    I have the same diagnosis and treatment as you have. Next Friday will be my 5th cycle of treatment. It works for me, but I have lots of side effects ..

    I hope this treatment works for you as well.

    Don't hesitate send me message if you have any question.


  • What does HL stand for in HLRCC?  My awareness  only goes as far as clear cell, papiliary, and chromophobe renal types. 

    Are you aware of the search bar at the top of the screen?  It's more hidden on phones and you can use it to search for drugs, or any key words or phrases, and then filter the results by the kidney group, or read posts from all groups.  Quite a lot of people on those drugs.  

  • Hi Mmum,

    Hereditary leiomyomatosis and renal cell cancer (HLRCC) is a hereditary condition associated with the development of multiple leiomyomas (smooth muscle tumors) in the skin and uterus (fibroids) as well as an agressive form of kidney cancer.

    HLRCC is a genetic condition. A specific gene called the fumarate hydratase (FH) gene is believed to cause it.


  • Hi Mano

    Glad to hear the treatment is working for you. I am having my first round this morning and I’m quite nervous in all honesty. I’m sure once I’m there all will be fine 

  • Don't forget to take a book, or a tablet to pass time.  Watching a film offline is a good one.