Bone, secondary cancer

Secondary bone cancer is cancer that has spread to the bones from a primary cancer somewhere else in the body. This group is for people affected by secondary bone cancer to share experiences and get support.

Unhappy

Ellieellie
Posted by

Hello

Received a letter today to say that my funding request for Palbociclib has been refused on the NHS.  My private insurance will no longer pay for it as they say it's their policy to stop it after year.  Dont know what to do next. I have a medication that my cancer responds well to and now I cant have it.  I feel like they are giving me a spade and telling me to dig my own grave. I feel very upset by all this and feel I have nowhere else to turn to. I cant afford to pay for it as the tablets cost 9ver £4,000 per round.  Apparently the reasons why I have been refused will follow in 7 days time.

latchbrook
Posted by

Hi

I hope you don't mind me poking my nose in here, as I'm not a member of this group, but I noticed that nobody had responded to you. 

Although I've not been in your position I can understand how devastated you must feel to be told that the NHS cannot fund the drug that you want to take. Hopefully your oncologist will have something else in mind for you. It may also be worth asking if there are any trials that you would be suitable for. Cancer Research UK has a database of clinical trials which you can search.

Sending a supportive ((hug))

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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Lass
Posted by

Hey Ellie, 

Well fuck them huh!!

Sorry I didn't respond sooner, I was doing some reading in between naps. Sadly not all of us are able to be on site 24/7.

I think the best thing I found was a Macmillan page talking about your rights to medications and what you can try if you're refused a treatment. You can find it here -

https://www.macmillan.org.uk/information-and-support/treating/treatment-decisions/coming-to-your-decision/when-treatment-not-available.html?returnUrl=https://www.macmillan.org.uk/information-and-support/treating/treatment-decisions/coming-to-your-decision/when-treatment-not-available.html

There are stories out there where it's worked for people who have tried going over the NHS decisions. Sadly though, you do need to be well enough physically and mentally to fight for yourself and persist at it and chase it up, etc. Which of course when you're talking about cancer, isn't always possible.

I think I'd probably wait for the letter with the reasons it was refused, then start sending off letters with all of the information in it so everyone has the full story as to what's going on. Because as you say, there's a drug that your cancer is responding to, and they are refusing to give it to you. And quite frankly, how dare they! 

Good luck with the fight! My fingers are crossed for you and I hope you can find something that works for you! 

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh