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
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Mick491
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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.
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.
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
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.
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Taken off ibrutinib
Ibrutinib Slow but steady foreward movement.
