Hello

  • 7 replies
  • 63 subscribers
  • 295 views

My story so far....I was diagnosed with kidney cancer in May 23 and had my right kidney removed in July 23. Unfortunately this had to be "open" and I was left with a 22inch scar that took approx 10-11 weeks to heal. I basically had the last dressing off the last week in Sept 23 and went straight into immunotherapy the following week Oct 23. My treatment has been stopped in Feb 24 as it has inflamed my lungs and was put on steroids' a few weeks later which hasn't been pleasant. What lies ahead we will have to see but thought I would just say hello.

  • Hi Gortin Lad

    Sounds like you are having a tough time. I hope things get easier for you.

    I am recently diagnosed with a mass they will be removing and only today said go ahead with a partial nephrectomy. I've been told today it could be 2-3 months before surgery.

    Good luck.

    MW

  • FormerMember
    FormerMember

    Hello and welcome,

    I also had a radical open nephrectomy to remove my right kidney and large tumour 9 weeks ago now. Reverse "L" scar was open in a couple of places after staples were removed but it has all come together ok, just still very red and a bit tender here and there now.
    My profile has all the details.
    The RCC cells were aggressive and I am high risk on Leibovich so immunotherapy is on the cards, but it is 4 weeks until I have my first appointment with that team to discuss it. Side effects are obviously a concern but will see what happens. I guess you had Pembrolizumab?
    Back to work on Friday with a phased return and light duties.

    Cheers.

  • Thank you and I hope the road ahead will get easier for you. Stay strong. Kind Regards Dee x

  • Thank you for your welcome. It’s good to know we are not alone and others are fighting this silent sneaky one too. All the best. Dee 

  • Hi 

    Yes was on Pembrolizumab, was receiving it every 6 weeks at start after 2 cycles it started to inflame my lungs so they suspended it for 2 weeks and my lungs improved so I was restarted at half dose every 3 weeks but after 3 or 4 more cycles the inflammation came back with a vengeance and it was then deemed to dangerous to continue. That was late February and I was left for a few weeks to see if things improved which didn't happen. Since then I've been on steroids (prednisolone) starting at 60mg and reducing by 10mg each week. I'm currently on 5mg alternate days which ends hopefully this weekend. My first experience of steroids and it has been an eye opener and the anxiety they bring on is shocking. With regards to doing the immunotherapy talk it over with your team, family and friends to help you weigh up the pros and cons. 

    Wishing you well with whatever you decide. 

  • Hi Monkey Wolf

    Firstly thanks for your reply and I hope your wait for surgery isn't too long, I was just under 2 months. Wishing you well with everything over the coming weeks.

    GL

  • Hi Dee

    Thank you for your kind words, hope you are doing ok too.

    Pete