Many have asked if I had been in touch with my local press in relation to being denied Ibrutinib for my relapsed CLL. On Friday last week I contacted the Nottingham Evening Post and the article below was put in today's paper. Interestingly NHS England responded to the journalists question. Also it appears there's a review on the drug in July. I personally don't think they will change things but we have to keep up the pressure. Please keep asking friends to sign the petition.
Thanks Jm954. I appreciate all that the CLLSA are doing. This affects all CLL sufferers now and in the future. Sadly NHS England are not just singling out CLL. My consultant also treats myeloma as his other specialty and he has exactly the same problem with a drug for that. I wonder how many more.
Mick, I’ve just set a copy of your story to all the tabloids and contacted a couple of celebs via Facebook to see if they can sending it out and boost the numbers! You’ve hit the half way mark! I hope it’s all sorted in time to help you!!! Take care
Excellent balanced report Mick and good to see they got all the facts right.
This is of such massive importance to CLL’ers in England who will go into FCR treatment not optimistic but fearful that remission will last beyond 3 years. Talk about stifling hope!
They’re treating us like cars that fail their MOT as ‘not economically viable to fix again!’.
If they don’t relent, it’s surely got to go to a legal action against NHSEngland. They’re being deviously creative in interpreting NICE guidelines it seems to me! 😡
Thanks Sue. My consultant is trying to get me on trial which includes Ibrutinib and another drug which should begin in August. He's done everything he can. Hence treating the symptoms. Unfortunately I feel very unwell. Thanks for the support it really is appreciated.
Thanks Sue appreciated. The trial is put forward by a professor who's hoping the combination will give a longer remission.. I will mention what you've said. But my consultant has stated FCR is an absolute last resort in my case. You take care too.
The problem is we have got to stop being special cases and get to the point where these drugs are available to all with CLL that need them. That is our task.
We need to get organisations to follow scientific data given when the drugs are passed. My consultant other specilism is myeloma and he says there is a similar problem with a drug for that. How many other cancer treatments are having this done. I will go through FCR if it's the only option but it will kill me a second time. If it die I hope someone picks up the Barton and uses the information from it.
Sorry to hear your still battling for your right to a fair treatment, I know you’ve now been knocked back for Ibrutinib but is there anywhere or anyway you could get onto a trial for Venetoclax as a secondary therapy, I’ll have a look fit you and get back to you.
My consultants are treating the symptoms at moment to get me to a point where a new trial is coming on combining Ibrutinib and the drug used when Ibrutinib no longer works. However there's no guarantee it will be in August. But my medics are doing the best. I can't express how much your support is appreciated. Cheers.
Mick,
As I am in the USA and not familiar with your NHS system I have not commented on these posts. But I guess I am confused...you nice people over there can no longer get IB except under restricted conditions? I mean...this is horrible. What are you expected to do...just get sicker and sicker?
UK is definitely seen here in the USA as progressive in medical areas...but I find this shocking to say the least.
I wish you well and that this mess gets sorted ASAP.
Correct. But there is no need to further damage the immune system as there is s proven drug to prevent patients suffering the harsh chemotherapy s 2nd time. NICE guidelines never added a 3 year remission. Ibrutinib is for any patient who has a relapse after already been treated with chemotherapy.
I AM FURIOUS ABOUT THIS! WE ARE NOW GOING TO BE WISHING A SHORTER REMISSION ON OURSELVES TO ENSURE WE HAVE ACCESS TO IBRUITINIB. IT'S SHOCKING. WE NEED TO GET BEHIND THIS. WHAT CAN WE DO?
Keep up the fight Mick, I think it’s disgusting that money is put before a humans life, you can guarantee billions would be found to go to war at the drop of a hat. We are all supporting you .
This is heartbreaking. If I were British, I would certainly sign for you. I sure hope someone comes to their senses soon and gives you the Ibrutinib. I am praying for you and your wife.
I'm so sorry you're having to go through all this, especially while feeling unwell. Wish I could sign, but I'm in the U.S. I hope a good way forward will happen for you. Sending love and prayers to you and your family, Mick.
Hi Mick, my MP held a surgery today. It was close to my house and I was able to speak to him freely. Gave him a letter and also a copy of a letter I found on the net. It was a freedom of information letter with a complete discription of the situation and couldnt have been better. He will investigate. Interested in the fact that Scotland and Wales could have ibrutinib. Lets hope July review fruitful. Take care, Anne
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