New to the group

I’m new to the group so thought I’d start by explaining my route here.

My journey started some 16 years ago when at the age of just 45 I suffered a heart attack. No family history, cholesterol or other indication, apart from being a little bit over weight I guess. Always kept fit, was an Army PTI, so well aware of health issues.  Anyway following the MI, my LFTs went scatty and an ultrasound scan showed a 3cm circular growth, with it’s own arterial feed on my right kidney.  Had to wait 12 months to recover from MI and get off blood thinning meds before undergoing a partial nephrectomy. 5 years of check ups and given the all clear. All was going well until I started getting some back aches and following an evening of instructing teenage dinghy sailors arrived home and passed a bowl full of claret! Hospital that evening, tests, scans as per routine to discover the remains part of the kidney had imploded. Total nephrectomy a few weeks later.

Again all settled down but during follow up scans found cancer had spread to lymph nodes. Started on Sunitinib, 4 on, 2 off, and apart from some seriously painful gout every month the lymph nodes shrank back within 18 months. Approx 2 years on nothing, lymph nodes growing again so onto Nivolumab, infusion ever month. All going great guns for 8 treatments but then LFTs started going up and my liver started rejecting due to the immunotherapy.  Started on low dose steroids, no reduction in LFTs so admitted and put onto high dose 1000mg daily. Still no charge to LFTS, now close to 400 mark, but steroids went to my head. Went mad, as my son told his friends, had a serious steroid induced psychotic event for 48hrs as they dropped my dosage rapidly. A bit of cold turkey I think.  Had to go on the anti rejection drug mycophenolate for 6 weeks, and anti psychotic drugs for a bit longer. Not a good time in my life, especially with all Covid restrictions.

Been having 3 monthly CT scans and on last couple a large mass was seen (they had been keeping an eye on it since admission 9 months ago), and spots in lungs and adrenal gland, although no change to lymph nodes. the result is that this week I have started on Cabozantinib 40 mg in the hope that the liver can be settled down again quickly.

I have read much on the KC forum and although there is much worry going forward, those already on Cabozantinib appear to be doing good, although with many varied side effects which I’m sure I’ll experience myself at some point.

So in summary I’ve had cancer now, on and off for 16 years. I am grateful I survived the heart attack and that it lead to the original KC being discovered early. I have walked my 2 daughters down the aisle in the extra time I’ve been given, so have lots to be thankful for.  I’m still working 5 days a week and will do so for as long as I can. I also organise a men only walking group every weekend, all who have had very serious life threatening incidents, so keep pretty busy.  I will however contribute what I can to this forum as it is great to “speak” with others in the same club.

Hope I've not waffled on too much but it’s good to know how we all ended up in this situation. Any words of advice gratefully appreciated and I hope I can learn more from others as this illness progresses.

Take care folks, keep fighting and if this drug doesn’t work I hope they may be more available before my time is up. Got a great wife, family and grandchildren to fight with me and provide the much needed support when needed.

Best regards

Dave in Somerset