Ibrutinib my story update: Hi all... - CLL Support Assoc...

CLL Support Association
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Ibrutinib my story update

Mick491
Mick491
39 Replies

Hi all, firstly thanks for the continued support.

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.

Mick

nottinghampost.com/news/hea...

39 Replies
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Jm954
Jm954Administrator

You’re a good man Mick, I hope the Ibrutinib comes soon for you.

CLLSA are still pushing and working hard on Ibrutinib at the political level at the moment for all CLL patients.

Take care.

2 likes
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Mick491
Mick491
in reply to Jm954

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.

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Jm954
Jm954Administrator
in reply to Mick491

I read today that some types of surgery are in the same position :( :(

Perhaps the additional money promised will help, we can but hope.

1 like
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Peggy4
Peggy4
in reply to Mick491

Yes, I heard that myeloma is also being treated the same. I read your link. Good article. I do hope things work out for you Mick.

Peggy

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CAHP

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

5 likes
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Mick491
Mick491
in reply to CAHP

Thanks for the support.

3 likes
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Newdawn
NewdawnAdministrator

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! 😡

Meanwhile you take care of yourself,

Newdawn

4 likes
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Mick491
Mick491
in reply to Newdawn

Thanks Newdawn. The wife broke down in tears speaking to the reporter.

1 like
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Newdawn
NewdawnAdministrator
in reply to Mick491

I’m not surprised Mick. Send her our very best wishes x

Newdawn

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Mick491
Mick491
in reply to Newdawn

Thanks spell check auto corrected your name on last post lol.

1 like
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Newdawn
NewdawnAdministrator
in reply to Mick491

No worries at all Mick, I’ve edited it for you.

Newdawn

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Steffi50
Steffi50
in reply to Newdawn

I agree they are treating us like cars. And I for one am mighty fed up with it. Mick we are all with you.

3 likes
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Wroxham

Hi Mick

Is there any way that your consultant could request from the supplier/manufacturer that you are a special case. This has been done before.

It is then supplied free of charge for life or until you no longer need it.

It's worth a try i would have thought.

Not sure what else to suggest as I've gone down all the other routes to try and help.

How can we motivate?

Any ideas?

Best wishes are sent to you both.

Sue

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Mick491
Mick491
in reply to Wroxham

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.

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Wroxham
Wroxham
in reply to Mick491

The drug is Ventaclax Mick, but i thought it was for 1st time treatment.

That's what my consultant told me.

Hopefully not.

Have you thought of Idelisib? It might

be a short term measure. I did well on this drug in the short term.

Sorry i can't help more Mick.

Best wishes are sent.

Sue

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Mick491
Mick491
in reply to Wroxham

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.

1 like
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Bramleys
Bramleys
in reply to Mick491

Hang in there, Mick. We are all teaming for you in every way.

Clare

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Steffi50

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.

1 like
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Mick491
Mick491
in reply to Steffi50

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.

1 like
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Wroxham
Wroxham
in reply to Steffi50

I agree. I am asking if there is anything else that can be done!

I realise that Mick is suffering and was offering a maybe short term measure.

Sue

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Steffi50
Steffi50
in reply to Wroxham

Not criticising - just so fed up with the way NHSEngland treat us

1 like
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Mick491
Mick491
in reply to Steffi50

Second best!

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Lewis78

Hi Mick

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.

Stuart

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Mick491
Mick491
in reply to Lewis78

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.

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Scottxxoo

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.

Scott

1 like
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Soundsinamotion

i think they are saying some patients need to get chemo for a 2nd time instead of going on ibrutinib. At least thats what i understand?

1 like
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Mick491

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.

1 like
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Soundsinamotion

I sure hope this all changes soon! It must change!

1 like
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Soundsinamotion

i wish i could sign your petition but i'm not british :(

2 likes
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Bethan49

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 STRONG..

2 likes
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Mick491
Mick491
in reply to Bethan49

Thank you. We have to raise awareness please contact your MP and of not already please sign the petition.

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dandelup

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 .

2 likes
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Mick491
Mick491
in reply to dandelup

Thanks

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dmmck

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.

1 like
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Mick491
Mick491
in reply to dmmck

Thanks for your kind words and support.

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Ohannie236

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.

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Mick491
Mick491
in reply to Ohannie236

Thanks for the support. Your prayers are most welcome too.

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AnneHill

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

1 like
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Mick491
Mick491
in reply to AnneHill

Well done. Thankyou

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