Metastatic renal cell cancer

  • 15 replies
  • 70 subscribers
  • 3121 views

Hi there, my Dad has just been diagnosed with metastatic renal cell cancer with secondaries in liver and lung. Very long process getting to the point of seeing an actual oncologist with treatment plan. Long delays for scans , biopsy , MDT and referrals. Sadly Dad has been getting weaker and frailer whilst waiting for the system, despite my emails to all professionals and even getting an emergency admission didn’t expedite any decisions. I think they would have just jumped to symptom management had me , Dad and mum not been assertive in saying we absolutely want treatment and up until two months ago, Dad was absolutely healthy! We now have two weeks to build him up on steroids and anti emetics to encourage his appetite to gain strength. If we get him stronger he will be able to have pazopanib to ease symptoms and slow growth. I need to know if anyone has any knowledge of alternative treatments such as immunotherapy which I could present to the consultant if the planned treatment doesn’t go to plan. Whilst Dad has fight in him then I will fight for him and he deserves treatment. I’m so frustrated as he was strong enough a few months back easily to withstand treatment and it’s just not fair that delays has meant he has got frailer whilst nothing was done! Any advice would be much appreciated.

  • Hi, my husband has the same, growths in other places. It did take time at the start to get going and he did get weaker and sicker waiting. Once he got started on treatment he perked up quickly, and while still not curable he is doing well 3 years in. 

    Sue
  • Hi Sue

    Thank you so much for your message! It’s is hugely encouraging to hear and I’m delighted for your husband. This is the hope I needed and will share with my dad to keep his fighting spirit up Heart

  • Hi, I too have metastatic rebel cell carcinoma which has spread to the bones and lungs. My oncologist tried me on immunotherapy (which didn’t work) so I am now on cabozantinib tablets which have kept my tumours stable at the moment. I am 63 and was very healthy before this diagnosis. Hope this help’s and your dad finds the right treatment.

    Regards

    Rose. Xx

  • Hi Rose, sorry to hear you are very poorly too. So reassuring to hear your cabozanitib treatment is keeping things stable for you. Do you experience many side effects on these? We’re you very unwell before starting this? X

  • Hi, the only side effect I’ve had with this is sickness which we are struggling to control. But I have found throughout my treatment that it’s all trial and error, but eventually something works. 
    before being diagnosed my only symptoms were pains in my leg and arm( which turned out to be kidney cancer which had spread to my bones) so I wasn’t poorly at all before. You will find that once pain control is organised everything is under control and life is living with the cancer rather than struggling with it. 
    regards 

    Rose xx

  • Thank you so much for these encouraging words, we so needed to hear this Heart

  • We are all in the same boat so like to help when we can. We have all had help ourselves when needed. We all work together and share experiences which helps us.

    Regards

    Rose xx

  • I am sharing these words with dad to keep his faith and encouragement up. Thank you xx

  • Hope we are helping, if only in a small way.

    regards

    Rose xx

  • Your words are helping me immensely and my dad who is now really positive and full of hope. The steroids he is on have majorly helped his appetite and he feels so much better. He can’t be on them long but he’s like his old self again! Have you experienced this on steroids? He is on them for just 2 weeks to build himself up for his Pazopanib x