Advanced kidney cancer

Hello there and welcome, although it would be nicer to meet elsewhere.  

I was diagnosed with metastatic kidney cancer in Nov 2021 (aged 52).  I had small mets to the lungs.  We've been managing it ever since.  I started immunotherapy in Jan 2022.  Then I went on a trial in June 2023 and ended all treatment in June 2024,  Still here to tell the tale.  My kidney tumour is 23mm, down from 59mm and my lung mets not detectable.  

What immunotherapy are you going on?  I was on ipilimumab and nivolumab.  I was a good responder.  Lucky me.  You've probably read the drug information leaflets for immunotherapy.  Scary huh?  They tell you if you get itching we'll give you blah X, and if you're sick we'll give you blah Y.  I wondered if I would be moving into the bathroom on  a semi-permanent basis.  But I didn't get any of the side effects they warned me about.  Instead I got really rare side effects related to too much inflammation.  Infammation is the required response to reduce the tumours but you can get immune related adverse events (IRAE) in response to too good a reaction.  I had interstital nephritis (in the kidney tubules) and my kidney function is poor as a result.  I also got other niggly side effects like dry mouth, congestion, dry eyes.  Just had a cataracts on Monday to fix the damage (I hope) caused by the immunology induced uveitis.  

Kidney cancer used to have a poor prognosis, but immunology has helped improve things.  Nivolumab when it arrived (2004 ish?) was hailed as the wonder drug because people suddenly survived for so much longer than the previous "try a bit of radiotherapy" approach.  

You can read my blog here.

Hi, I’ve been on Pembrolizumab immunotherapy which stopped in Feb 26 and still take Lenvatinib daily.  The Pembro was indeed a journey for me. I had body aches similar to flu and severe fatigue which I just dealt with. Colitis a couple of times treated with steroids and a break from treatment. Under active thyroid treated with medication no break necessary. Then 17 months into treatment immunotherapy induced hepatitis. Pembro stopped permanently at this point.  It sounds worse than what it is was and I was gutted when treatment ended early. 

The good news tumour went from 17cm to 8cm. They decided to remove the kidney this past July. I had a complete pathological response meaning no cancer detected.  Thrilled with this result.  I only had 4 mets in my lungs which have shrunk to below 5mm and the oncologist says they are possibly in active or scar tissue.  I’ve just had a CT scan last week, first one since op and see my oncologist later this month for results. 

So all in all I’m pleased I done the immunotherapy as I got result I never dreamt possible.  

Hello

Excellent news regarding the success of your treatment and nephrectomy.

I have a question which I hope you don't mind. What dose of Lenvatinib are you on and how do you get on with it ? 

I ask because I was on pembrolizumab and lenvatinib to shrink my tumor. It was successful and I had surgery in late August. 

I am now back on Pembrolizumab and lenvatinib. Whilst I am happy with the pembrolizumab despite it causing hypothyroidism I am unhappy with lenvatinib as it sends my blood pressure into overdrive and destroys my appetite. Has this happened to you ?

I am due to see the oncologist in a couple of weeks and am considering asking for a dose reduction. I am on 20mg.

Thank you for reading this.

Vicki

I’m well into  my third year of immunotherapy and without it’s I’d be dead long ago. Everyone has different side effects so just go with it and see. 
I stayed on Pembro- has a severe side effects and stopped for three months and cancer grew rapidly . Started again with levatanib so had both. Some minor problems and admission due to feeling really unwell but realistically I sailed through it really. Most of my problems related to rheumatoid arthritis. After two yrs of Pembro- the limit- levatanib stopped working so now on cabozantinib but only just starting third month so no idea of effectiveness 

Hi Vicki

I'm currently on 10mg daily but I do get high blood pressure from it.  It’s been a mission to get a blood pressure tablet that suits me but finally got that sorted.  I went from 20mg to 10mg and had the same blood pressure issues.  

sorry for the delay in replying

Hi Mimi22, so pleased to hear of the good results of your immunotherapy.  I’m currently on Pembro, about a third of the way through a course of 17 cycles, following surgery 6 months ago (partial nephrectomy and adrenalectomy). At first the side effects weren’t too bad - fatigue and itchy skin - but now a few months on, as well as fatigue I’m getting gastric problems every couple of weeks and I’m worried about ending up with colitis, I've heard that can happen with Pembro. It’s getting me down but I want to carry on and complete the course if I can tolerate it.