How does NHS treatment compare with elsewhere?

[Research123]

I'm on watch and wait and was looking at the CLL support website, according to which you're likely to get ibrutinib here after other treatments don't work. I am wondering if this is the case, if it makes sense or actually treatment just is quite a few years behind the USA simply as the nhs can't afford it? Would appreciate any comments and views.

[fapumpkin]

I have had Ibrutinib/rituximab as my first line of treatment as part of the Flair clinical trial.

[Research123 in reply to fapumpkin]

Thank you

[Newdawn Administrator]

It’s true that outside of a clinical trial, Ibrutinib is not offered as first line treatment in the U.K. unless the patient has a TP53/17p deletion. FCR chemo is still the first line treatment offered by the NHS.

Ibrutinib is offered second line and failing that, Venetoclax third line.

Undoubtedly cost is an issue but there’s lots of work going on trying to persuade NICE to review treatment provision.

NHS generally offer excellent haematological care however with no concern for cost or co-pay for the patient.

Trying to get onto a clinical trial is the best option.

Newdawn

[Research123 in reply to Newdawn]

Thank you. Am I right in saying in US they tend to try ibrutinib etc first? I am wondering how one gets on to one of these trials - is it best to approach directly?

[Newdawn Administrator in reply to Research123]

Your Consultant can refer you to the trial and should actually be recommending suitable trial options if treatment is imminent.

Newdawn

[kitchengardener2 in reply to Newdawn]

Is there an age condition attached to selection for acceptance to the Flair trial.

I have been watch and wait for almost two years, I feel incredibly well, probably better than I have for years. I am soon to be 68 but wonder what my first line of treatment is likely to be.

[Newdawn Administrator in reply to kitchengardener2]

The age limit for the Flair trial is between 18-75 yrs.

It was due to close for applicants but I’m not sure if it’s now been extended. I think they’re still recruiting.

Certainly worth enquiring.

Newdawn

[bennevisplace in reply to kitchengardener2]

As I guess your consultant has said, early treatment of CLL before the cells and the symptoms dictate is not recommended, so you could be several/ many years on watch and wait. Who knows what first line treatment options will be then. I suspect that FCR will be history in 5 years or so. New and potentially better therapies will line up to compete with the current crop of targeted drugs, at least some of which should become more affordable.

[Newdawn Administrator in reply to bennevisplace]

Absolutely agree. Don’t chase a specific trial before treatment need is established. Flair is good but there may be better in the pipeline and hopefully FCR may be off the list by then for the majority. Truth is, it can be absolutely the right choice for some people and amazing remissions can be had with FCR.

Newdawn

[Jonquiljo in reply to Newdawn]

Treatment in the USA is mixed. Sure, we are often given the more expensive CLL drugs - but not always. It depends on your insurance plan. The US is money-centric and those without money generally get nothing or very little. So, if you have the slow onse of CLL, it takes a physician paying attention to actually diagnose you. And yes, lots don't pay attention.

Far more important is the fact that in the USA you are often ignored as a patient until you have a problem that just can't be ignored. I get the impression that in the UK's NHS, there is always someone available (albeit probably with a wait) to look at you. In the US, you really need to have a good reason to be looked at before someone will look at you. It all varies too.

[Research123 in reply to Jonquiljo]

Thank you. I suppose we all want the best and should try to get the best treatment we can but reading your reply reminds me I should count my blessings too.

[stevebran in reply to Jonquiljo]

Thanks Jonquiljo. It’s good to hear from someone from USA as I too have often wondered about the pros and cons of the 2 health care systems. I am on W&W and suffer from awful debilitating fatigue (I also have fibromyalgia) which led to my CLL being discovered 5 years ago now. The NHS has very little to offer patients on W&W short of advice on pacing or CBT, neither of which have helped me. Have you tried using over the counter drugs available in the USA for fatigue, such as modafinil? These are not available for us here in the UK and I have often wondered if they could improve my fatigue and my diminishing QOL.

[Research123 in reply to stevebran]

As it happens I used modafinil before I was diagnosed. I got it from some online pharmacy. It certainly gave me energy -i got much more done-but I stopped the moment I was diagnosed as well as cutting back on coffee (and switching to vegan/pescatarian). My theory was the body needs as much rest as it can get in our situations, so stimulants were probably not helpful. Modafinil is an anti-narcolepsy drug so if our bodies think they need sleep, we'd let them get it. My theory is to try keep as healthy as possible to delay treatment whilst the medicine improves. I also do HIIT exercises, short bursts of intense exercise, and that helps my energy.

[Research123 in reply to stevebran]

Incidentally the vegan low- carb diet immediately gave me more energy. I spend most of the time eating huge vegetable and lentil stews, smoothies and lots of peanuts + some fish - no potatoes rice bread

[stevebran in reply to Research123]

Thanks for sharing what works for you, I’ve learnt so much from fellow travellers ( “patients” doesn’t sound right ) in this group. I will certainly look into HIIT, as one of the things I miss most is being able to have a good workout. Unfortunately I haven’t yet found an activity or exercise that gives me those benefits that doesn’t later amplify my fatigue and pain.

[AdrianUK in reply to Newdawn]

Just to say the criteria for venetoclax have changed. It is no longer required to be third line but can be given second line.

The NICE guidelines really clearly say “Venetoclax with rituximab is recommended, within its marketing authorisation, as an option for treating chronic lymphocytic leukaemia in adults who have had at least 1 previous therapy.” See nice.org.uk/guidance/ta561/...

This didn’t use to be the case but it now is. There was a change that happened when nice consider the second line data (original studies wirh venetoclax were only third line then there was exciting second line study followed by the first line one).

[Ladylin151]

I'm in the US; my husband has CLL. Chemo is no longer first line treatment recommendation and that part isn't determined by our insurance. It IS up to the patient to find a clinician they are comfortable with that will make a expedient and correct diagnosis and help them be comfortable with their treatment plan. So...the "best" part of American medicine...the ability to choose...is also the worst part, because that responsibility falls to the patient and may well have factors such as money, insurance and location. MOST people with CLL will fall under the umbrella of Medicare ( age 67-ish) which covers part of the cost of Imbruvica on all plans, with costs depending on your plan. Help with drug costs is also available thru other means but it can be tricky to track that down as, again, that responsibility falls to the patient.

[FairweatherSailor]

I think that our UK NHS does a fantastic job. When I was diagnosed with CLL (2 1/2 years ago) I was still at work and still covered by a private health plan. That stopped when I retired and I was concerned how I was going to be managed under the NHS. I am still on W&W. Happily the wonderful NHS stepped in and I am now monitored by the Royal Marsden who have exceeded my expectations and I feel that I am getting the best testing and advice possible. Even individual advice from the consultant during the lock down which enabled me to get out taking exercise more than a month ago. I feel very comfortable that when (and if) the time comes for treatment that it will be the best available.

[Racing1961 in reply to FairweatherSailor]

I too go to the Marsden. They always make you feel like you are a real person, not just a number. I have been going there for 3 years now as I was very unhappy with the care I was getting at my local hospital.

[AnneHill]

Things change all the time. In 2010 I had chemo fcr and at the time Rituximab was a game changer. It was the best treatment. I had 5 years remission and it was 3 years before I needed treatment again

I have been on Ibrutinib for almost a year. It worked very quickly. My red blood cells went too low and iron tablets have helped that. Being anaemic was making me out of breath and I had more energy when I had the iron.

My platelets are dropping and hopefully wont get worse They will take me off the Ibrutinib if they drop too much, they have said. No idea what happens next.

I also have introvenus immunaglobulin. Began 3 years ago and its kept me well.

Things are changing and there will be other drugs. Hopefully you will benefit from one of those. I am very happy with my treatment and glad I dont have to pay for it. All drugs have side effects and although I am lucky to have Ibrutinib, It gave me a fright when I realised that it might not be a long term solution.

It would be interesting to know how many people have had fcr and would choose it if they were in the same position again.

Uk takes its time to give drugs on the nhs but gets there in the end. USA appear to have the best drugs but need money and often have to travel a long way for the best consultants. I hope you get whatever drug you need and in the meantime when this covid ever goes, remember to enjoy life, Anne uk

[Research123 in reply to AnneHill]

Thank you. The rate of progress is amazing so we see how it goes I suppose.