3. Introducing Multiple Myeloma

Waiting to get to the start line

If you arrive at the start of a marathon with plenty of time, the best thing to do is queue for the toilets.  Then when you come out, join the queue again, once will not be enough.  Time can drag when you are waiting to start.  Have a chat with people otherwise you can feel nervous and you notice every little ache and pain.

The next days and weeks were spent learning about myeloma.  I’m not sure I paid attention to the biology lesson when we covered stem cells and the immune system when I was at school 50 years ago and now it was important.

And at a cellular level, I had not been paying attention to what I was doing, either.

In the simplest terms, there are two things that should be going on to keep me healthy that are relevant to this: the stem cells in my bone marrow should be producing immune cells in my blood and my bones should be renewed by removing old bone while new bone is being formed to replace it.

I have been producing some dodgy immune cells which were now clogging up my blood and they were stopping the new bone from being formed.  The old bone was still being destroyed, hence all the calcium the GP spotted in my blood.  My bones had patches that were not replaced properly, hence my GP’s earlier mention of lucent bone (which shows up on x-rays looking like holes).

Please don’t rely on my explanation, there is a much better one, along with videos, on the Myeloma UK website.

What is myeloma?

How long has it been going on?  Well, it didn’t all happen in the last six months.  I would probably have had signs of this earlier if I had checked for a condition called MGUS.  The consultant reassured me that I was in pretty average condition compared to many of his other new patients, although from stories I have heard since I think I have it easy.  Some people first find out when a vertebra collapses and they are taken to A&E.

For someone who has hardly bothered the doctors over the years, I was suddenly making up for it by having every test under the sun.  A bone marrow biopsy was followed by an MRI scan and a colonoscopy.  Some of the test results take what seems a long time to come back.  Again, I had some anxiety about all the damage being done in the meantime but soon I came to trust the team and to realise that everything was progressing as it should.

My consultant seemed to have a good idea of the treatment plan from the beginning but had to fine tune some details according to results and my circumstances.  It was to begin with three cycles of chemotherapy, then a stem cell transplant, followed by two or three more cycles of chemo.  Each cycle lasts 28 days and involves visiting the hospital once a week.

The drugs involved in my plan are Daratumumab, Lenalidomide, Bortezomib and Dexamethasone.  I’ll also have Zoledronic acid to help with bone strengthening, but as I had some dental implants in January that will be introduced later when the implants have healed.

The Autologous Stem Cell Transplant involves having my immune system wiped out then re-grown from stem cells that are harvested before the treatment starts.  I’ll be in an isolation room at the hospital for two to four weeks until my immune system reappears, then there is a 100 day spell when I have to isolate at home.

Vitality Health are good once you are diagnosed with cancer.  The initial claim involved waiting on the phone for 40 minutes to get through, and plenty of forms, but once you are assigned to Oncology Care there is a direct line.  They contact the consultant direct which helps take away some stress.

You do need to keep careful note of all the claim references because there is a lot of paperwork involved in being ill.  Each visit to a new clinic needed a form.  And now I give my date of birth whenever I introduce myself to someone new.