I've received encouragement, learning and inspiration from other people's posts on this forum and various Facebook pages. I've commented on various posts from time to time but I thought I should attempt to provide others, particularly those new to Amyloidosis, with some hope and encouragement by outlining my own journey.
I was diagnosed with AL Amyloidosis in April 2012 when I was 58 years old. I have liver, spleen and kidneys involvement. This followed two years of investigations, separately, by a gastroenterologist and a nephrologist into liver and kidney symptoms that my GP had referred in early 2010. So, I think it's safe to say that amyloid was forming and being deposited from at least two years before I was diagnosed. I still believe that this was a relatively quick diagnosis of a rare disease, though. It was the gastroenterologist that finally called for a liver biopsy and this was what first identified the presence of amyloid in my liver, identified by the Congo red staining of the sample. The nephrologist followed suit with a kidney biopsy (ouch!) and, sure enough, there was amyloid there, too, identified again by the Congo red staining of the sample. Within a month I was referred to the National Amyloidosis Centre in the Royal Free Hospital, London. I live in the UK near Liverpool.
How did I feel? When the gastroenterologist told me I had amyloid on my liver it went straight over my head, never heard of it! When I pushed him for prognosis and treatability he wouldn't go there. Not his field of expertise, to be fair. He'd got me a very quick referral to the experts in the NAC and I was very grateful for that. I was also grateful that he'd hit on something definite, that whatever it was that had forced me to stop playing golf because of fatigue and breathlessness now had a chance to be fixed! But I did what most people probably do when I got home from that first mention of the word amyloid, straight onto the Internet! I was sorry I did because there isn't much good news to read about this disease. Not until you get on a forum like this, anyway. I asked all the health professionals I know about Amyloidosis and a typical reaction was "Well, I've heard of it but not since medical school".
My two days in the NAC in April 2012 were arguably two of the most important and fruitful days of my life. With their suite of tests and scans, including a bone marrow biopsy and aspirate (ouch again!), they were able to confirm a diagnosis of systemic AL Amyloidosis. At this time my Lambda Free Light Chains measured 495mg/l (versus a 'normal' range of 6-26mg/l). I was put on the CTD chemotherapy treatment to reduce my Lambda FLCs and therefore stop the production of amyloid. I was on the chemo from May to October 2012. It proved successful and, once recovered from the chemo itself, I noticed how much better I felt physically. I took early retirement in November 2012 because I felt it was time to concentrate on my fitness and health. I was playing golf again in February 2013. I went on to have a fabulous 18 months of remission, despite the fact that my Lambda FLCs had started trending up again from mid 2013.
Inevitably, the FLCs reached a point last year where more chemo was required. This time the plan was for a Velcade/Dexamethasone regimen culminating in HDT/SCT. I was on the Velcade/Dex from May to August 2014 and was breezing it until the last cycle and a half, when I suffered quite severe side effects. The most serious was neuropathy in my lower limbs and from my knees down went numb. Not pleasant. However, over time that's easing off and I'm confident of a good outcome there.
My stem cells were harvested in September 2014 and I had my stem cell transplant in the Royal Liverpool Hospital on 16 April. It was a challenge for sure because melphalan is a quite brutal chemo drug. However, once 'engraftment' of my nice fresh cells happened I started improving in the way I felt and so another recovery journey started.
I've had two blood samples tested for free light chains since my SCT and I'm delighted to say that both returned results in the normal range. The outcome I'm expecting from the SCT is a much longer period of remission (years).
Today I'm celebrating my SCT Day +100 and I'm feeling good! I have been as active as possible since my SCT and am now enjoying riding my motorcycles and playing golf again. I feel lucky to have got life back to as normal as I could have reasonably expected. Even my hair and beard have started growing again!
I am a patient volunteer involved in the drug trial that has been communicated through abridged versions of the report posted on this site recently and, again, I consider myself lucky to have responded to the anti-SAP antibody that I received. More to be thankful for, more to be grateful for and hopefully this and other clinical trials that are taking place will give many more Amyloidosis patients hope in the future. It has me, I hope it has you, too.
So you can see there's good reasons for me to be celebrating Day +100 but I'll never take anything for granted.
The investments I've made in time spent during the various treatments since 2012, particularly over the past year or so, seem well worthwhile at the moment. For that I will be forever grateful to the wonderful health professionals who have cared for me at the National Amyloidosis Centre in the Royal Free Hospital in London, the team in the Bone Marrow Transplant Unit in the Royal Liverpool University Hospital, the team in the Haematology Unit of Arrowe Park Hospital, Wirral and the teams who administered the trial drug in Quintiles London and GSK in Addenbrookes Hospital, Cambridge.
The support I've had from my wife and family and friends throughout this period is second to none and I love them to bits ❤️
Thanks for taking an interest in my journey and I hope I've succeeded in providing hope and encouragement. Not just from the new drug but chemotherapy interventions worked well for me. I wish you all well.
