Wednesday 18 September 2019

Background

The parts of this post in italics have been added later (04/06/20) for the sake of completeness of the record.

It started a bit over a year ago. I was getting back pain much higher up my spine than ever before (I've lived with low back pain for close to forty years). The only thing I could do about it was to sit with a rolled up cushion behind my upper back for ten minutes or so (before breakfast). I took it to my GP Dr.Ku and the first thing he said was "Might be bone cancer. We need to rule some things out."
"You're a cheerful fellow", I said...

Not long after that I developed a sharp pain in my right shoulder-blade (as I thought).The partial cure for that was to lie flat on the living room floor for ten minutes before breakfast. I got Sue to rub ibuprofen gel into it - I can't quite reach the spot myself because of reduced mobility caused by my broken left shoulder. It had no effect at all.

With both of these things I assumed "soft tissue" explanations that would sort themselves out given time. And in fact both pains did go away after a few weeks.

At the end of a Parish Council meting in March 2019 I started to get out of my chair and was hit by a sharp and excruciating pain in my left groin. I could barely stand and couldn't walk (I had no stick with me, not that one would have helped much). My fellow councillors had to almost carry me to my car. Luckily it's an automatic so I had no need of my left foot - no way could I have worked a clutch pedal. When I got home I had to phone Sue to bring me a couple of walking sticks, and with the aid of those I got myself into the house. Again I thought it was "soft tissue", and again the pain went away in two or three weeks.

He ordered blood tests, which showed elevated paraprotein levels. That sent me to Haematology and a CT scan (and an aborted MRI, which I couldn't tolerate). The diagnosis was MGUS, with no evidence of bone lesions or other signs of Myeloma.  So I knew I had a very small chance of developing Myeloma, but didn't expect anything for a long time to come. Nevertheless, in the back of my mind, I suppose that subconsciously I was preparing myself for the news...

It simply never occurred to me that the upper back problem, the "shoulder-blade" one and the acute groin pain might be the first signs of myeloma. It seemed far too soon after the MGUS diagnosis.

I developed a severe walking problem with pain in my left hip and an  increasing conviction that the joint just wasn't working quite like the other one. Among other problems it limited mobility so that I couldn't  get on my bike - or expect to get off it safely if I ever did manage to get on. Because of that and the increased risk of fracture if I happened to come off, I haven't used the bike since and have resigned myself to that part of life being gone forever. Dammit. After some delay which I now regret, Dr.Ku ordered an X-ray of my left pelvis and hip joint., leading to another CT scan and more blood tests. Result: I have a big (at least 6cm) "osteolytic lesion" impacting on my left hip joint, plus several other lesions in lower and upper spine and one in a back rib. And increasing paraprotein levels, which means that I have Multiple Myeloma.

That big lesion may also be a "tumerous growth" from the bone in my left hip, impacting on the function of the joint.

It's now obvious - and my consultant agrees - that all three were "pathological fractures" - breaks in areas of bone weakened by the onset of myeloma. I have lesions in exactly the right places, including one in the no.4 back rib just behind where the "shoulder-blade" pain was. That's why the ibuprofen gel didn't work.

Well, we now have a treatment plan. I've had an initial hit of steroids (Dexamethasone) which seems to have knocked the cancerous plasma cells in my bone marrow back a bit. Next is a course of up to 10 radiotherapy sessions aimed at "palliative" reduction of the growth in my left hip, which hopefully will make walking a lot easier. After that comes VTD chemotherapy (several cycles) followed by an autologous stem cell  bone marrow transplant at Bart's in London next spring. And with luck, that should lead to several years of remission...

My Myeloma seems to be a bit off the normal course. Looked at from the bone lesion POV, I've come a long way from nothing (apart from MGUS a year ago) to multiple lesions now. OTOH, my systemic numbers (FBC, calcium, renal, liver, immune system) are all good / normal - whereas they would usually be expected to be below normal. So the "staging" of my cancer is going to be on the unusual side. As far as I'm concerned, a failing immune system is what's most likely to finish me off in the end, so the better those numbers are the happier I am...


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