Living in the shadow…

Life is a little better. Jon remains in the constant shadow of the grim reaper and yet we find we’ve adjusted more to living in the moment and are both doing ok. The intense shock, and the dreadful grief, which followed the terminal diagnosis and worsening scans in 2014 and early 2015 has eased. Riding around the UK mainland coast last year, while Facing Up 2 Kidney Cancer, was both cathartic and totally absorbing for both of us.Man in The Mirror 1

At the end of the ride the news was good, we’d raised a lot of money (currently c.£43,000) for the early diagnosis kidney cancer research project at UCL and more importantly – Jon did for one brief CT scan reach disease stability. Meaning that for a very short time that there was no further spread and no increase in the size of the lung metastases.  It felt like a miracle, and then, as is very common with Renal Cell Carcinoma, the two most IMG_4779troublesome metastases in the lungs started growing again. Jon has metastases in two places: in the lung lobes and in the lymph nodes situated in the lungs. With the help of the Kidney Cancer Support Network the Early Access Scheme (EAMs) for Nivolumab opened for a brief few weeks earlier this year and Jon’s oncologist recommended this treatment for him. He was very lucky to have this opportunity, and we sincerely hope that NICE approval for this drug for Kidney Cancer will follow in the autumn. He started on this drug four weeks ago, and we won’t know anything until the July scan and review.  Nevertheless we do dare to hope.

Jon was informed by his consultant oncologist that there are “significant risks” while on Nivolumab, and just because he is coping with the drug quite well at the moment doesn’t remove the risk. The drug revs up the immune system and it can easily turn on a healthy part of the body, by mistake, leading to severe complications. Jon was issued with fifty pages of literature and side effects, a patient card and emergency steroids, all of which he carries around with him wherever he goes.

We printed out the fifty pages at home, as it came by email to save NHS costs, The manufacturers Bristol  Myers Squibb are paying for Jon’s medication. This heightened risk of serious side effects will last for five months after the very last dose. We have taken every precaution we can and just try not to think about it, whist being aware if various and specific symptoms appear. Giving up alcohol is the one thing that Jon minds about the most. It was never mentioned by the oncology team or in the literature but in Jon for some reason the two things simply don’t mix, and he has lost his beer buds.

The horizon seems a little further away and there is more good news in the global battle against kidney cancer. Two new drugs have received approval in the USA after only a two stage trial. The trial goes under the name of Study 205. It is a combination of 2 drugs, Lenvima and Afinitor which is a mTOR affinaitir . The risk of progression or death on this study was reduced by 63 percent compared with prescribing the mTOR inhibitor Afinitor singly. Median progression-free survival (PFS) with the two drugs combined was 14.6 versus 5.5 months with Afinitor alone. The combination led to a reduction in risk of death by 33 percent versus the single-agent Afinitor. This is such terrific news.

We have also heard about two other patients on a different combination trial of two new drugs in this country. We believe they both may have had significant reductions in their tumours after only 20 weeks on the trial. 

Jon says: “My hear and now thought is that I’m mighty received that so far the side effects of the Nivolumab are manageable. I don’t feel like a terminal patient at the moment, even though I know a cure is unlikely.” 

Hope, like the current spring sunshine, is essential to the human condition. Our first Macmillan nurse said we would come to terms with it all, and that she couldn’t fix it, but she could help us through it. I didn’t believe her at the time, and dare I say it, it made me very cross, I didn’t think I would ever accept Jon’s terminal illness. However two years on we have quietly settled again and have achieved amazing things, while both tacitly accepting that barring a miracle from the “medical genies” (as our friend and fellow Kidney cancer patient Maria calls them) Jon’s time is limited. Yet very unexpectedly, in many other ways, we are having the time of our lives. We appreciate every day together, our home, and our many friends and family. The clear blue skies of May make it easier to look forwards – beyond the July scan, and the further eleven months of intense Nivolumab treatment – to the possibility that there will be more time, more stability, and perhaps a lot more living to do yet, as well as a lot more fundraising for Maxine Tran’s research project. We still need your help to donate, to hold an event or take on a challenge and be one of our heroes.

© Sarah Birchall 14/05/2016