As you know I was denied Ibrutinib as I was in remission for 3.8 years and NHS England put a cap at 3 years before relapse. Anyway I've been really struggling and I saw the consultant on Tuesday and he got me in today for the first of 3 strong dosage IV Steriods. The original plan was to get me to August for the new Clare trial. Unfortunately there seems to be a problem with the manufacturing of the new combined drug. When I asked what the plan B was he said conventional chemotherapy!!
Chin up though and I'll enjoy feeling good for a couple of week.
Mick
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Mick491
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This is so wrong Mick! What is happening to our NHS? 😩
I hope that all goes as well as it can and that someone with some authority can reverse this cruel decision which will affect so many people. Take care. 💞
I’m sorry to hear your being made to suffer again, its beginning to sound deliberate. I don’t know how there having problems manufacturing the drugs if it’s still the Ibrutinib and Venetoclax as their readily available but just need to be signed off by the trial team and your specialist.
Hope the IV gives you the boost needed until the trials ready.
I'm thinking it's the delivery of the drug not just taking two tablets. But in fairness to my consultant he did say it's planned for August but things do happen. So I was always prepped for it coming later. He even mentioned this steriod boost could be repeated if needs be, slough they don't like to. He's doing all he can to keep me off FCR. So no blame on my clinicians. And you never know now that NHS England are reviewing new evidence regarding Ibrutinib they may change their mind and I could even get that. If I have the choice I want the trial as it sounds a good prognosis if you can tolerate the regime in its early stages.
I presumed they were trying to hold back the trial from you on the grounds there aren’t enough tablets or capsules available.
I’m taking Ibrutinib and it’s worked excellent for me but the only downside is the duration you have to take it for which can possible be for life, a small price to pay to be alive and well.😁
I’d definitely do everything you can to hold off for that trial I’ve heard lots of good things about it with patients reaching MRD status within 16-18 months and discontinuing therapy.
You should be fine tolerating them as you’ll be closely monitored, I think the big issue with Venetoclax is tumour lysis because of the speed in which it kills the cells, and Ibrutinib for me was only very minor side effects and with a few dietary alterations and keeping yourself hydrated well were pretty much nonexistent.
I hope you get the trial as I’m very interested in it as well and there’s even been mention it could be a cure for some.
Thanks for the info Stuart. I shall bear in mind with the other information I've been collating.
I have heard from a third party the use of the word cure, but only in the sense of the trial being another step towards it. The idea behind the trial as told by my consultant is that Ibrutinib like all medicines reaches a point where the host becomes tolerant to it, and I believe the average is 5 years or so. Then the majority of patients are put on venetoclax. Apparently the professor who is putting the study forward ha had great trial results in the past. It's his belief that they way the two drugs work and in combination will give a longer remission. If it works I could then meet my make through something else lol. But seriously I have high hopes.
I did read somewhere that alone both therapies are great but together there unmatchable, strangely from what I’ve heard and read it’s the older of the two Ibrutinib that gives Venetoclax the boost.
I’m not sure everyone’s Cll becomes tolerant to the Ibrutinib, I thought it can take up to five years to reach MRD status from it. But the current data doesn’t stretch far enough yet to give us all the answers.
I doubt you’ll meet your maker thru Cll with all the science going into it now. I think all being well if you start that trial in August by the end of the year you’ll be back to looking and feeling great again.
I was in a very bad way when I was diagnosed due to the ignorance and neglect of my old GP, my Hgb was 52 so you can imagine any longer and I wouldn’t be here but I’ve bounced back and 22 months later my blood works all back to normal.
Thanks Stuart. We obviously read or pick up on different things but until a scientific paper is put together we won't no for sure.
CLL won't kill me but probably pneumonia will. In the last 8 years I've had it every year although I'm now given preventative antibiotics which has kept it nearer a heavy chest infection but still had to go to clinic for heavy antibiotics. Before that had sev3rsl stays in hospital because of it.
The thing with Ibrutinib that impresses me as well as it attacking the cancer cells the effects give you and improved quality of life which I am in desperate need of.
I'm confident one way or another help will come without the need for FCR. If not, never mind, I survived a very serious accident in 1990 and I've been on borrowed time since. I have had a good life despite my problems. Take care thanks.
It's NHS England current guidelines that anyone who has survived more than 3 years cannot be prescribed it. I survived 3.8 years and despite my consultants wishing to prescribe it to me they can't. I have put many posts on here about this. Hope this helps.
What he means by survive is he went into a remission after his first line therapy which lasted just over 3 years but unfortunately the NHS is currently refusing to abide by guidelines to treat patients with Ibrutinib a second line therapy if there remission has lasted longer than 3 years.
Mick is currently battling to keep himself fit enough to partake in another trial of targeted therapies which is starting very soon to prevent him having to go thru the harder chemotherapy route he did originally.
Wind up - I'm learning a lot of British English on this site. The trouble with communicating on the internet, as wonderful as it is to have friends around the world, is that it's easy for misunderstandings to develop, especially on a site like this where newcomers don't know the background story. The fact that the health systems are very different in different countries adds to the confusion.
Mick, while I can't sign your petition, I have passed it on to friends in the U.K. who have, and are spreading it. I hope the steroid treatments hold you until you can start the trial! Hang on! There are people around the world thinking of you and sending lots of positive energy your way.
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