Ibrutinib my update

[Mick491]

To keep you up to speed. I've just been to see my consultant and in the last 3 weeks there has been a case review and all the consultants agreed Ibrutinib was the best treatment for me but have declined me that treatment because of the NHS England's new guidelines.

He's doing a temporary fix for now of antivirals, steroids and antibiotics. I need a heart stress test before chemo or there maybe a new flare test that comes available in August which involves Ibrutinib and one or two other drugs.

Kind regards Mick Smith

[Newdawn Administrator]

Mick, I find myself absolutely raging at the position you are in now and so many of us will find ourselves in if this iniquitous position on Ibrutinib isn’t reversed back to the agreed position.

With your heart situation, it’s obvious why a second round of chemo isn’t the preferred option and I can imagine your medical team share the frustration. I hope you can be enrolled on a Flair trial or something suitable to avoid the chemo option.

England seems to becoming a second world country in terms of blood cancer treatments and we must all fight back against the monstrous injustice of this decision.

Best wishes,

Newdawn

[Wroxham]

Do not see how your consultant can deny you Mick!! Did he have it in writing about the new rules?

This is just so wrong and we must work so hard to get it reversed.

Sorry.

Sue

[Wroxham in reply to Wroxham]

What about Idelalisib Mick?

Was this tablet even mentioned.

Please ask.

Sue

[Mick491 in reply to Wroxham]

We went through all the boxes I need to tick to go on it. I found out I came out of remission after 3 years 8 months. Also if I was 65 I ticked all the medical boxes. There's no doubt he was correct. He wanted to give it me but clearly couldn't. Not only that at a case meeting whilst all the consultants said Ibrutinib the also agreed I couldn't get it.

He's made other plans best he can but it's frustrating.

Mick

[Elizabetha]

I am so sorry to hear this Mick and I hope that you respond well to this new cocktail.

This situation is so wrong! We really need to keep up the momentum in highlighting this issue and getting the decision changed.

[Mick491 in reply to Elizabetha]

The cocktail is temporary to give a few weeks for other things and hopefully in that time we can get this reversed.

Thanks for the good wishes and support.

Mick

[Peggy4]

Oh my goodness. This is just awful!

Peggy

[C180ji]

This is so sad, how can they do this. We are all in the same boat 😔

[JigFettler Volunteer]

b-s-h.org.uk/about-us/news/...

[Mick491]

Worth a read. Let's hope all the political pressure and from other groups plus the petition get NHS England to reverse it's decision.

[BlueGillfisherman]

Good Morning ,

That is why we threw the tea in Boston's Harper! Best of luck from this side of the pond

james

[Mick491]

Thanks for the support and good wishes.

[GMa27]

So frustrating! 😟

[Mick491 in reply to GMa27]

It is thankyou

[ladyprescott]

My best to you, Mick. Keep us updated. Carole

[Mick491 in reply to ladyprescott]

Thankyou

[AnneHill in reply to Mick491]

Hi Nick, Im proberly going to be in the same position as you. I was in remission after fcr for 5 years. My levels have begun rising more quickly and a ct scan has been booked. seeing consultant in less than 2 mths. I was told I was eligable for Ibrutinib 2yrs ago. Cant see it happening. Remission 5yrs and Im 60. Im hoping I dont need treatment in 2mths and that the decision is reversed. Maybe I can get on a trial. I hope things go well for you. Good luck, Anne

[dmmck]

Unbelievable! We know what works, and they won’t let you have it. What a disgrace. I wish you the best.

[Mick491]

Thankyou

[Corkyrissa]

Wishing you all the best. Prayers out to you. ❤️🙏🏻

[Mick491 in reply to Corkyrissa]

Thankyou. I believe God is watching over me for my last battle x

[Eric_68]

I just read about that England change to Ibrutinib

Don't know much about that med but feel sad a medical body would allow that

When you have a condition, you want to be treated.

Hope they do something for you Mick

[casanova]

It really is so cruel. Let's hope the petition shows the strength of opinion for a change in policy. May it happen soon. Stay as strong as you can.

Maureen uk

[Mick491]

Thankyou

[Me2AsWell]

Hi Mick, So very sorry for you - this really is an outrage, and so misguided. I'd love to see the economic analysis that is underpinning this. I can (possibly) see the short-term gain, but the long-term costs to the health system of further debilitating our immune systems with a second round of FCR will surely be huge. All for 18-24 months of remission!

I am in the same boat as you - relapsing after just over three years and well under 65. Given the insanity of this policy, it may be that my blood pressure will be too high to take FCR again.