My husband was diagnosed with stage 3 RCC 4 years ago, had a radical left nephrectomy and all was well for about a year, then scans showed lung nodules which whilst monitored remained stable for around a year/18 months, then scans showed tumour on right adrenal gland and a lymph node in the chest which were treated with radiotherapy and they remain stable however he now has further mets to his pancreas so we are about to start treatment next week and the above drugs are our consultants weapon of choice.
I’m just looking to get some shared experiences on this drug combo and any hints/tips for what to look out for.
we’re blessed really as 4 years in to this journey we’re doing well and my husband remains well with no real cancer symptoms. I’m just apprehensive that the treatment now that is meant to keep him with me and keep him well might actually make him sick when he’s never been sick through his cancer journey.
thank you all in advance.
Your final paragraph resonates very much with me. In the now 19 months since my radical right nephrectomy I’ve known that I have mets to my lungs but having recovered well from open surgery I’ve had a year or so where having Stage 4 RCC has caused me almost no inconvenience whatsoever. I am now in a similar situation to your husband (and really impressed that he’s been so well for four years). I too feel very well, although the CT scans say that those things that are growing, even though they’re not causing me any bother at the moment, cannot be left much longer. So I am due to start on an Axitinib and Avelumab combination any time soon, I’m just waiting for the letter to tell me when.
Since kidney cancer crashed into our lives I’ve done a fair amount of research into whatever drugs I might be put on when the time came, but I don’t think I’d ever heard of Pembrolizumab. Although as it’s a “mab” I’m sure that it’s an immunotherapy drug administered by intravenous infusions like the Avelumab that I’m being lined up for. The list of possible side effects is indeed daunting, but no one gets all of them and different people experience them to different degrees. Your husband has probably been thinking, as have I, why am I about to go on drug treatment that will almost definitely make me feel lousier than I do at the moment?!
All of which preamble leads up to me saying that I’m not able to answer your specific question. Actually I’ve never seen anyone here talk about Pembrolizumab; but in another recent thread you’ll see that several others are ahead of me on the Axitinib / Avelumab combo and I’m encouraged that they seem to be handling it well. I’m sure that Ax / Pemb wouldn’t be so different. Thing is, how long can we leave it until the metastases actually do cause trouble? And, if we do leave it, is there a point of no return? If our medical teams say now’s the time to hit those things with the drugs, then I think we kinda have to. In a sense we don’t have a lot of choice, do we?
Sorry I can’t be of more use, but great to meet you and huge best wishes to you and your husband, from someone at a somewhat similar stage in the journey.
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