CLL Support Association
9,949 members15,569 posts

Medical update

Hi all

I know some of you have been following my story since being refused treatment with Ibrutinib as NHS England decided not to follow NICE guidelines.

I'm currently being reviewed on a 3 weekly basis. I was put on sreriods antivirals and antibiotics to treat the symptoms not the cause. The steroids helped with the fatigue and sweats and did lift my spirits. My consultant and the hospital team still think Ibrutinib would be the best treatment but can't use it. We discussed having FCR but he's against that for a number of reasons. The plan is to get me through to August when there maybe a new trial of a combination of drugs one of which is Ibrutinib. So I am to continue with this trio of drugs. If I get unwell to call the consultant and the plan then is to boost me with IV sreriods for a week on a Monday Wednesday and Friday. Hopefully by that time the trial will be available and he's already said I meet the requirements.

If anyone still has not signed the petition regarding Ibrutinib please do. It could be you next.

Stay well all.

Mick

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Mick, you’re the classic example of just how wrong and dangerous this ‘guidance’ is.

Wishing you well and hoping this dreadful situation can be reversed!

Newdawn

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Thanks for the support.

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Has anyone tried contacting the BBC 2 Victoria Derbyshire TV programme?

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Firstly Mick, my sympathies with this predicament, and I hope the treatment you are getting will hold things until August.

But HOW can we get more publicity for this completely intolerable situation.?

Is there any way to put this to a newspaper, or a BBC investigational program, that can run with some kind of crusade.?

Newspapers can exert considerable pressure on politicians, since these same politicians need assistance when we all get to vote again.

Also newspapers can, and have, run successful crusades over plastic bags, or policing.

So why not a newspaper crusade on this obvious failure within the NHS.?

Dick

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If you find a way Sick you have permission to use my story. Thanks for the support.

Mick

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I was thinking of exactly the same thing...what about Sean O’Neal from The Times? My hubby was only dx last week and I hadn’t a clue about CLL or these drugs so I’m new to it all ...but can he help or are there any other journalists (even celebs) that have CLL that would be willing to take this on? Ohhhhh I’ve just seen you message re your piece with Sean - why didn’t it go to print? Could Sean not push it?

Social media can get this to 10k, has everyone shared it and then resent it to check eyeyone has done it? Could people post it on their own towns/interest groups Facebook pages? Getting a celeb on board would be amazing - they have the fab bases to get this out there...any famous ones with CLL?

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Wishing you well Mick. I do hope everything works out for you. I find it all unbelievable and very worrying.

Peggy

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Thanks for the support

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So sorry to hear your situation is as it is. I have signed the petition, asked friends to do the same and wrote to my MP. This is so wrong. I hope you remain stable until the trial comes up. All the very best to you.

Good luck and god bless.

Ann

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Thanks for the support

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I can't sign the petition as I'm not in the UK, but you are in my thoughts and prayers. Stay strong.

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Thanks. Your prayers and support are very welcome. God bless

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Mick, this is a pretty difficult situation you are in I hope it will be resolved soon for you. My husband and I are both lucky enough to be on Ibrutinib, I am on the Flair trial and my husband has been put on it as he has 3 failed treatments. We are in Wales so we are not governed by the same NHS rules as England. We don’t usually feel privileged but on this occasion we do.

All the best

June

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Good luck to you both. Thanks for the support x

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Unbelievable situation!

I hope someone can get somewhere with changing the regulations.

My husband could well be in your shoes one day...

Good luck, keep us all updated. I have a feeling you are a strong person who will do well!

Fran 👍🏻

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Thanks

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Hi Mick, I am so so sorry. I have been tweeting/FBing everything that comes out and anxiously waiting to see what the questions raised in the HoL deliver. We have our poster boy, Sean O'Neill (no disrespect meant - that guy is brilliant IMHO) but we need more. The problem is the disease is not well known or well understood. As a group we need to be united and more vocal in the UK. CLLSA are doing a great job but I knew the petition would struggle to get to 10k and that the chance of a debate in parliament was just a distant dream. With your permission I will highlight your case (under your handle) on Twitter as I am now following all the health editors and they may pick up. I am wishing you every kind of strength to keep going until you get appropriate treatment.

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Thanks for the support. Please feel free to use my details even my name. I have been in touch with Sean O'Niel he even did a piece about me but it never got to print.

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Posted. I am under @steffisutters if any of you warriors are able to RT me.

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Prayers.

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Thanks

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Wishing you well Mick and hope you can hang on and get into one of the trials.

Beattie

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Thanks

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Sorry ti hear you are caught up in this denial of treatment it’s so wrong, I have signed and shared the petition, good luck

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Thanks

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You are in my thoughts and prayers...sending good wishes for current treatments to keep you safe from dreaded CLL symptoms and for your being able to be included in upcoming trial. I live in USA so I cannot sign the petition, but I have friends to UK. I will be emailing them about your situation and asking them to sign the petition and to ask their friends.

Wishing good days and good health to all, especially you, MIck.

SMS

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Thanks much appreciated

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Mick,

Please email me details about survey so I can tell friends in UK how to find it.

Thanks,

SMS

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Hi Thankyou link below.

petition.parliament.uk/peti...

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Thanks, I will send ASAP.

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Sounds like you aren't the only one. Just picked this up as there is another case in my area and it was front page headlines. I'm recruiting friends to sign the petition.

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Thanks

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Hi Mick

Sorry to hear your struggles but hasn’t anybody spoken to a solicitor yet about a lawsuit against the NHS, rules are rules and people’s lives are at risk and I’m sure they’d pay attention if charges were put against them.

I know their under mounting pressure with funding and lack of staff but that’s an intentional plot by the government to make them look bad in order to eventually sell them off and privatise them.

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Thanks

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Hi Mick, I will be in the same situation as you soon. I have a ct scan next week and a consultation on 10 July. I was interested in the possibility of a new drugs trial. If I was suitable it will come at the right time. I did well on fcr and I thought I was getting ibrutinib next time. It was a shock when I read on this site that we are being deprived of all the new advances in cll. I signed the petition and my MP will be at a drop in session on June 23. Its prob intended to talk about highways issues but I am intending to speak to him if possible. I hope you get the trial as its clear you need treatment now. Good luck, Anne

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Thanks still fighting.

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I’m so sorry you’re going through this. Stay strong and we’ll pray for the best outcome.

Pam

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Thanks

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Praying for you. Where is the petition?

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Hi thanks for the support. Petition link below.

petition.parliament.uk/peti...

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I am in the US so I cannot sign the petition after reading all the comments I realized I cannot. Still thinking and praying for you.

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Thanks anyway.

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I am so sad about this. I am far away in Canada but praying for you and this situation from here.

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Thanks

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Mick491 I am new here and just saw your post. I am 44 and have CLL and I stopped my Ibrutinib Saturday. Was wondering what made you refuse this drug. The side effects I was experiencing were not tolerable for me in regards to guality of life. Also, I was told by my new oncologist that my last oncologist didn't follow proper guidelines for my care. She said I should have been given chemotherapy before ever being started on Ibrutinib. New oncologist wants me to do FCR or BR. What is your diagnosis if you don't mind me asking?

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Hi

I haven't stopped taking it. Because of a ruling by NHS England my consultant can't prescibe it going against over government regulatory body advice. In 2010 I had FCR but now need treatment. My consultants say Ibrutinib is the best treatment for me. This unfortunately won't end well for me.

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hi cancerwarrior,

I think your oncologist is wrong. Trials have shown that treatment naive patients do better on Ibrutinib that those who have been previously treated with chemoimmunotherapy. Of course if the Ibrutinib fails for whatever reason then chemoimmunotherapy is an alternative although there are other non-chemo alternatives such as venetoclax. I hope that whatever treatment you decide on will give you good results.

Cheers.

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Thanks

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Redlion the Ibrutinib didn't keep my LDH and Lymphocytes down for long at all. I started taking 3 a day in 8/2017 and it's already not working anymore. Night sweats back, utter exhaustion, low grade fever and getting sick really easy. The Ibrutinib also made my vision blurred and I would get dizzy and fall pretty frequently. I'm only 44 and have been given a cane and walker because I kept falling. Thank goodness I never broke anything. New oncologist said my best option to go into remission is FCR or BR. I will make sure to write down to ask her about Ventetoclax. Going to research it first, thanks so much.

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What a vexing and difficult situation to find yourself in. I hope this trio of drugs sees you through until August. Every good wish to you.

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Thankyou

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I have signed the petition. And also agree the newspapers should be contacted and should be informed of this serious failure by NHS.

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Thankyou. An article is going in the Nottingham evening post. Please feel free to notify others.

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Please send me the link when the article comes out. You should not be denied medication

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Hi Mick,

There is enough to worry about when you have CLL without being refused treatment.

So sorry you have to go through this - unfortunately I cannot sign the petition as I am in the US. It's very hard to understand how this can happen.

All the best to you and please keep us posted on how you are doing.

Big hug,

D.

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Thanks for the support and I will do.

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Best wishes going forward. Hopefully there is an appeals process you can take. Your story is why a lot of Americans are against socialized medical care, but that's a debate for another day. I hope you see your way through to getting proper treatment.

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Hi Mick,

I have signed the petition and sent it to loads of people to sign.

Best wishes...

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Thankyou so much.

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