Ibrutinib

[Mick491]

I know many are following the issue regarding NHS England's behind closed doors decision not fund treatment for CLL patients who have relapse after more than 3 years remission. Like many of you I have contacted my MP. I was not the first to do so and he was already were of it and has written to NHS England.

Unfortunately I am in the position after 7 and half years remission I now require treatment and on Tuesday we will be discussing what treatment.

[Jm954 Administrator]

Mick491, hopefully you will be able to postpone your treatment for a short while if Ibrutinib isn't offered.

CLLSA are working hard and doing everything they can within their resources to overturn this NHSE advice.

Please let us know what happens on Tuesday

[Mick491 in reply to Jm954]

Thanks. Will do.

[Wroxham]

Hi Mick

Advocate strongly for yourself please.

Go in with all the reasons of why you should not have chemo again.

I wish you luck, we are on your side.

I still haven't heard back from my MP.

Sandy Martin. Anyone else had any luck? With him.

Best wishes Mick.

Sue

[Mick491 in reply to Wroxham]

Thanks Sue

I have a list of questions ready and a number of ideas. Although I'm not against another round of FCR I'm a little concerned as 12 months after previously being given it I had a massive heart attack requiring surgery. This may remove it as an option.

My consultant has had a case meeting with the other specialists in the clinic so hopefully there are a number of options. I will also discuss Ibrutinib and if it is suitable but not available I may postpone treatment as I hope NHS England will be forced to reverse it's current stance.

Thanks again

Mick

[cllady01 Former Volunteer in reply to Mick491]

Mick, Ibrutinib may not be a viable option for you, having had a heart attack--it does have some serious side effects. Just bear that in mind as you inquire. AND, let us know how your appt. goes.

[Wroxham in reply to cllady01]

Well said cllady, was going to add second post but you beat me to it.

Brains!!!

Sue

[devonrr]

Can I ask a question?

FCR is only for those under 65 and with no comorbities. So if you are over 65 and been treated with chemo once, can you still have non chemo treatment such as Ibrutinib?

[Jm954 Administrator in reply to devonrr]

So, these are the criteria for Ibrutinib as specified by NHSE

**Must have received at least one prior anti-CD20-containing chemo-immunotherapy for CLL or SLL

** Considered not appropriate f or treatment or retreatment with purineanalogue based therapy due to:

a. Failure to respond to chemo-immunotherapy OR

b. A progression-free interval of less than 3 years OR

c. Age of 70yrs or more OR

d. Age of 65yrs or more plus the presence of comorbidities

- A performance status of ECOG 0-2

- A neutrophil count of ≥0.75 x 10⁹/l

- A platelet count of ≥30 x 10⁹/l

- Patient not on warfarin or CYP3A4/5 inhibitors

- No prior treatment with idelalisib unless idelalisib has had to be stopped within 6 months of its start solely as a consequence of dose-limiting toxicity and in the clear absence of disease progression.

[devonrr in reply to Jm954]

Thank you. Very useful.

[AdrianUK in reply to Jm954]

It’s a bit frustrating that this NHSE document hasn’t been made fully public. It’s outrageous that they have done this and I think we should all be allowed to see why they came to this conclusion. I honestly think a legal remedy may be required. But it’s odd as they seem to be saying that an ECOG of 0-2 constitute a Co morbidity. I don’t think they understand now it’s measured unless there’s a typo somewhere. An ECOG of 0-2 is actually quite good and would include most patients who aren’t severely ill! ecog-acrin.org/resources/ec...

[ornstin in reply to AdrianUK]

My interpretation of this guidance is that the ECOG isn't being treated as co-morbidity but as one additional factor that needs to be satisfied for someone to be entitled to ibrutinib. I thought this because eg with platelets it says they must be over 30 not under 30. But I can't say I am 100% sure! Antony

[annmcgowan]

Hi like many I have written to my MP. I am awaiting a reply. No one should be in the position you find yourself in. Keep us informed of how you go.

Fingers crossed for you

Ann

[Mick491 in reply to annmcgowan]

Thanks will do Ann

Mick

[Newdawn Administrator]

Thinking of you and hoping it goes well Mick. We are all interested in the outcome.

The psychological impact of these recent iniquitous proposals mean that people will be willing themselves to relapse quickly to avoid falling foul of the qualifying criteria for Ibrutinib. Even worse, we’ll be hoping for less favourable prognostics to qualify at all. It’s quite appalling!

Newdawn

[AdrianUK in reply to Newdawn]

Also surely Haematolgists would be tempted together with patients to declare a relapse earlier and on perhaps slightly spurious grounds if they can see one creeping up on a patient who’s also getting close to 3 years post FCR. What I mean is they might treat people earlier to avoid this!

[Mick491]

The support is appreciated

Will give feedback on here.