Pomalidomide: The New Regime

I’ll say this for the NHS:  they don’t give up easily.
FL has worked his way steadily through the menu of drugs for myeloma, and just when we thought his number might be up, the Consultant has pulled a dodgy-looking bunny out of her hat.  Or maybe it is a guinea pig.
Or rather, no… FL is the guinea pig.

Pomalidomide is not yet approved by NICE or the Scottish Medical Council, but has been sanctioned for selective use in Europe. You won’t yet find it on the Macmillan website, but there is lots of info available from a US-based website: here.   I like that website because it doesn’t mess about.  You want to know what your chances of survival are?  They will tell you.  Try extracting that sort of info from a UK-based doctor!

So here is the new regime:  Pomalidomide, 4mg daily (21 days on, 7 days off) for an initial cycle of 3 months (subject to tolerance); Dexamethasone, 20mg once a week; a daily Heparin injection (to thin his blood – guess whose job that is?);  Allopurinol (for fear of gout); Omeprazole (as usual, to protect his stomach), Sodium Clodronate (as usual, to strengthen his bones).

We have a gorgeous red record book which must cost a bomb to print due to the saturation of the ink on the risk assessment pages.  Lovely.
I have to check his symptoms against that list every day, and ring the Helpline if he strays into the red zone.
And we were given a thermometer, because I have to check his temperature twice a day.
I am not going to pretend I am happy about this new turn of events.
Obviously, I would like him to stay alive for as long as he is happy to do so.
But we have always agreed that quality of life is more important than longevity.
And dignity.  And independence.
Right now, he has driven himself into the local town to buy the newspaper and some eggs for tomorrow’s breakfast.  He might pop into Wetherspoons to say hello to his pals and manage half a pint of beer before he drives himself home again in time for dinner.
That level of independence is crucial to him.
And every time we embark on a new course of treatment, the poisonous power of the medication takes another swipe at his energy levels, his physical strength and his general sense of self esteem.
We thought we were done with this sort of commitment to a regime.

I had imagined a gentle slowing down of pace, longer naps, a gradual decline.
Instead, he is being offered the hope of … what?  A few more months?  At what cost?
But how can we refuse?
Really, truly there is no choice to be made.  We have to grab onto the hope of a little longer together.
And good gracious, man!  He has a book to finish writing!
And so it is that I must learn to be a nurse.  On top of the day job:  because I dare not let that slip.
Thank goodness for knitting.  That’s all I can think about right now.  Thank goodness for knitting.