Saturday, 26 September 2009

Goodbye Sutent - Hello Afinitor !!!

I have turned into a zombie.

I'm not sure if I will be the flesh eating kind yet but it stands a good chance with the appetite the increase in steroids has given me.

I'm hardly sleeping at night - hardly sleeping at all actually, just a couple of snatched hours here and there during the day. The nights I spend either on here, reading and trying to distract myself, watching late night telly - which can be dreadful or surprisingly good depending on my mood - or lying, gently seething, at the snoring body in the bed next to me. Its not Martins fault I cant sleep of course, but there is nothing more irritating when you can't than to have someone next to you who is having his full 8 hours.

And the reason I'm not sleeping?


Pain in my feet, my knees, my thighs, my side, my times it seems its just everywhere it so hard to differentiate where its coming from. I saw Dr. Jill at the hospice a week ago when this was first beginning to be a real problem and she increased both my steroids and my MST. This seemed to help for a few days but now its back again with a vengeance.

Sleep deprevation is awful - it exacerbates absolutely everything. Thinking straight becomes a real problem. Making the simpliest little decision can take on the magnitude of a 'Who wants to be a Millionaire' question. Without the phone a friend option. Tempers get frayed (mine) and people wisely avoid you (Martin and the kids - and even the cats keep their distance now).

It sounds pretty hopeless doesn't it but there is a glimmer of hope on the horizon. Last Thursday I went to see Prof. James at the QE clinic to see about my having some radiotherapy. Everyone here was busy working except Edward who had a free afternoon from college so I took him for company this time. Surprisingly he agreed without much of a fight.

It was strange sitting in the clinic waiting but not for Dr P. this time. He was there busy with his testicles and prostates and when he saw me he came over with some brilliant, amazing news.

I have got Afinitor !!!

I could have jumped up and kissed him - except my legs were hurting !

It took a while for the news to sink in. I've just started on cycle 19 (or is it 20? I cant remember) of Sutent and this will be my last one. Next month I will start Afinitor. A new drug which works in a different way and has been developed especially for when Sutent doesn't work or stops working. New over here anyway, it's been used in the US very sucessfully for a while now of course.

I was still grinning like an idiot when I went in to see Prof. James and what he had planned for me made me even more positive and hopeful and SO encouraged. This week I'm starting radiotherapy on my legs and the lump under my boob - 10 days of intense treatment and it is specifically to help with the pain I'm getting and may even slow down the growth of these tumours.

So - radiotherapy for 2 weeks to help with pain and slow down tumour growth. First infusion of Zometa to strengthen bones on 8th October. And then starting Afinitor at the end of October.

This is what I hang on to in the dark, early hours when I cant sleep......


Alexei said...

Boo to the wretched sleeplessness and pain but Hurrah for starting on a new treatment.

I'm off to google afinator and get a bit informed.

Love and courage.

LYN said...


Sybil said...

Dearest Jane, I am so pleased that you have some good news about the afinator and will be praying that it will, like the stutent become you very bestest friend. Meanwhile you know that we are all here and in our prayers,and whenever I wake in the night...which I often do for no reason at thoughts turn to you so you are never really alone.
Much Love Sybil xxx

Anonymous said...

Jane so glad to know your drug has been approved, just hope the pain eases and you can sleep, you are such an inspiration to all who read about you, you deserve the best,bless you

Andy said...

I know exactly what you mean when you share a bed with someone who is getting there 8 hours and you are wide awake and things pass through your mind.

I have finished the 8 courses of Ofatumumab and I am in a kind of no mans land waiting for the scan on October 5th.

Most of the time I feel OK but since Thursday I have felt under par, mainly I think through pure frustration and letting things dwell on my mind.

Hope the new treatment works well for you-I will be thinking of you.


Colswife said...

Glad to hear Afinitor has been approved. Hope you find some pain relief and manage some sleep. I saw you at the QE last Thursday while I was there with my husband Colin.

Sandy said...

Jane - You are such a pillar of strength it amazes me! My TJ is beginning to have severe pain in his back and I fear his cancer has spread there. An MRI will tell us as soon as they get it scheduled.

ADB said...

I am pleased you'll be started on a new treatment, now that the old has ceased working for you. Very sad that you are in such pain, and that can certainly drag you down. Hang on in there, Jane, keep fighting the fight!

Slacker Mom said...


I'm so glad to see the video's on your sidebar. how very impressed I am with your strength and happy to hear you tell your story.

I cried with you and your best friend~and then as your husband so stoicly talked of vacationing a year away (painful truths, they are).

I've been away most of the summer but so glad to see you still here!

Jackie said...

Hi Jane
I've had so many problems logging in here today and yesterday don't know why but it wouldn't accept my password?? but I'm here now and want to say I'm glad for you that you've got a new drug and treatment for the pain at last! Nothing knocks you're wonderful sense of humour, live and fight it for ever Jane!
Jackie x

karen said...

so glad to hear you're getting the radiography and the Afinitor - I hope you get much success from both. would taking a sleeping aid help you get some sleep and a few hours relief from the pain - although i don't have that pain, i was so unable to shut down my mind that i couldn't get any sleep - now with my friend Trazadone, it helps me so much and allows me to enjoy my days much more. and i think your body must feel the pain so much more when sleep deprived. take care dear jane, with hugs from across the pond,
karen in ottawa canada

pam said...

Hi Jane. So pleased about Afinitor. Not before time! It Is so natural to become a 'Snappy Croc' (or so I got fondly called!) when you are In so much pain and have severe sleep deprivation. My Mister Man was snoring out of control...Not now tho, he had harmless polyps in his nose and took meds to shrink them! If Martin Is clear for these then a Chinese Chop Stick In the ribs will do It! lol (sorry Martin) On reading your post I froze at the line...'It was strange sitting in the clinic waiting but not for Dr P. this time. He was there busy with his testicles'.... I Was just thinking Naughty Dr P when I read on lol. Right this Is turning Into my usual novel so I will go now and make an effort at posting a new entry! Try going back to basics jane with chilled music, candles, hot bath, the man coming in the window with the box of chocs! Hope you get relief from this crappy pain soon. Tell the cats to be more understanding and that I said! lol. Love Pam.xx

Shirley said...

Good luck with Thursday Jane, Ill be thinking of you.

God Bless
Much Love.
Shirley (Kurly)

Yasmin said...

Isn't late night TV dreadful but surprisingly soothing if you just let wash over you. Great news about Affinator and good luck for tommorrow.

Take care


genki's new life said...
This comment has been removed by the author.
genki's new life said...
This comment has been removed by the author.
genki's new life said...


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