Tuesday, April 22, 2014

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.



29 comments:

sewingslowly said...

Thank goodness for knitting.

Sending love and strength to both of you. Hope you're not needle-phobic...

Tamsin said...

Sounds like it is not really good news nor is it bad. How does FL feel about it all? My thoughts are with you, and as you say, thank goodness for knitting.

Louise Perry said...

One day at a time. My thoughts are with you both. So glad craft is such an escape for you that is fabulous.

K.Line said...

Lord - this is a roller coaster of massive proportions but you are a strong couple and I'm sure that is sustaining you both. I have to say, as I've been reading for a while, you are managing this terrible challenge with realism, honesty and articulateness. I can't imagine I'd be able to do the same. I'm giving you both many positive thoughts. xo

K.Line said...

Lord - this is a roller coaster of massive proportions but you are a strong couple and I'm sure that is sustaining you both. I have to say, as I've been reading for a while, you are managing this terrible challenge with realism, honesty and articulateness. I can't imagine I'd be able to do the same. I'm giving you both many positive thoughts. xo

The Foggy Knitter said...

That sounds so hard, have a big hug and have you looked into what carer support and respite care you can get? x

Colleen said...

Sending you love and kindness from North Carolina.

Paula said...

Hugs. I've come across the drug via work very recently. Hopefully the impact on quality of life is minimal. Myeloma is a tough road.

Paula said...

And just to add best site for facts about drug licenses, why they are licensed and side effects is the European Medicines agency.

Stephen Greene said...

Being one on the patient side, I have no idea how difficult this is for you. I know it is a torture not knowing how FL is feeling, is he in pain, (he won't tell), wondering will he make it through the near challenge and the next and... Well,it is indescribably difficult.

We patients are blessedly distracted by the placing of one hoof before another. We're not sure where we are or how we feel because we forget what it felt like to be stronger. From time to time we worry about how we impact the lives of our care givers. Care givers wake up each day to a constant, dreadful awareness of the others prospects without a schedule of the events which will happen along the way.

I hope care givers, those near me,those out there, and you, Roo, find respite along the way.I fear, though, knitting will not suffice.

blueseashellz said...

Canadian info for you:
http://www.myelomabeacon.com/news/2014/02/11/pomalyst-pomalidomide-imnovid-approval-canada-multiple-myeloma/

http://www.newswire.ca/en/story/1303563/health-canada-approves-pr-pomalyst-tm-pomalidomide-capsules-providing-new-hope-for-patients-with-progressive-multiple-myeloma

http://www.myelomacanada.ca/docs/2012_oct._myelomacanada_final_pom_os_release.pdf

Lorna A said...

I think I have to agree with Stephen when he says how tough it can be to be the care giver. Mike has always said he just has to do what they tell him, but when he doesn't, I'm the one who gets it in the neck for telling him he's got to.

I'm surprised you can even concentrate on knitting! :-)

Sarahel said...

We're dealing with husbands with very different conditions but I so empathise with your description of your roller coaster. You articulate it so well. I think of you both often and send positive support.

dottiedoodle said...

Hugs to both of you. I've just listened to a fascinating documentary on Radio 4 about knitting. Available soon here http://www.bbc.co.uk/programmes/b0418p75

ambermog said...

Hugs and strength sent for you both Roo, may the drug help without too many side effects and may FL continue writing his book.

verykerryberry said...

I don't really have the words, just thoughts- for you both x

verykerryberry said...

I don't really have the words, just thoughts- for you both x

madeinoxford said...

Knitting is a safe haven when things are so tough. Will keep hoping that the new regime gives you some more precious time xx

Isabella said...

It's scary stuff, isn't it? You'll do it and get through it because you have to, really. Been there, done that. Good luck to both of you. :)

Jeanette Archer said...

Only recently found your blog after a recommendation from a friend. I wasn't going to comment, and really I have no wise words or pearls of wisdom, but I know from my own troubles how important it is sometimes to just get a comment from a stranger saying that they care. I do, and wish you all love. x

Linda said...

Sending HUGS to you both. My Dad had myeloma so I know how difficult it is. The drugs sound familiar! Good luck.

Star speckles said...

There's nothing I can say, except that I wish you both love and I'm thinking of you. I hope it goes well, whatever "well" means for you.

x

Roobeedoo said...

Just to say thank you to everyone who has commented, and the links are very helpful - it is good to see that at least they all say the same!
Onwards... :)

Kirsty said...

Love to you and I think of you often.

Lynn Barnes said...

I know y'all are not religious. Those of us who are will offer up prayers for ... well, for normalcy, and for no pain or discomfort, and for a chance to finish things that are unfinished, and long meaningful conversations. And strength for the journey. That's a start, at least. You do not have to walk it alone.

Annie @ knitsofacto said...

Hey Roo, I always read, I just don't find time to comment much these days, but I couldn't let this one go by ... thank goodness for knitting, and for anything else that will carry you guys through this. Lynn has put it way better than I can, although I'm not religious either. Hugs x

Sandy said...

I'm late to the party, so to speak, but I can relate to the challenges. You definitely are not alone on this journey, and if knitting is a salvation, no one can fault you for going after it like Madame LeFarge with the guillotine of MM hanging over FL's head. Sending you big hugs and Reiki energy for those days when FL gets his back up.

Nicky said...

Knitting can be such a stress reliever. The smooth repetative movement is soothing and having the chance to take your thoughts away from the daily happenings in the house can be a real benefit.
Love the color of the socks. Looking forward to seeing them finished.

angeeza said...

I discovered your blog by your sunny knitting and sewing works a few days ago. My English is bad, but my best thoughts are with you and your man.