Time of Life

[Denisguay]

Hello! Does anyone know the longest a person has lived on ibrutinib? How many years? Not counting the years without treatment?. Cheers, Danny.

[HopeME]

I believe the first Ibrutinib clinical trial is about 8 years out. I know there are still many doing fine on that first line treatment but I can’t quote the numbers. Interesting question.

Best

Mark

[lankisterguy Volunteer in reply to HopeME]

Hi Mark & Dennisguay,

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Some of us "old guys" remember when it was called PCI-32765 by Pharmacyclics and the Phase 1 & 2 trials were started in May 2010 , clinicaltrials.gov/ct2/show...

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ncbi.nlm.nih.gov/pmc/articl...

SNIP: Between May 2010 and July 2011, 117 patients were enrolled in single agent studies of ibrutinib in CLL

So those people would be the only candidates in the world to have been on the drug for more than 11 years.

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I was offered a spot in the Phase 3 trial in mid 2012 and that involved about 300 patients, so those could have been on for about 10 years.

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Ibrutinib was first approved in late 2013, so that greatly expanded the numbers, so the likely number is near 9 years, if you a can find one of them.

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Len

[HopeME in reply to lankisterguy]

Thank you for providing that context Len. It is very helpful.

Mark

[Denisguay in reply to lankisterguy]

Hi!! Do you know if those people of The first essay in 2010 are Alive ?? Thx. Dennys

[lankisterguy Volunteer in reply to Denisguay]

A wild guess, without any verifiable data would predict that over 50% would be alive. But most (like me) have moved on to different treatments (I have taken 5 of the ~10 drugs approved since 2010). The ones that are not alive likely succumbed to pneumonia, heart disease, COVID, etc. But that is a wild guess.

Len

[Denisguay in reply to lankisterguy]

You are a Survivor!!How do you feel? How is your actual state. Side effects?

[lankisterguy Volunteer in reply to Denisguay]

My detailed history can be found at the top of my profile healthunlocked.com/user/lan... & "read more"-

I rarely had side effects above Grade 1 and lasted more than a few months on any of the 5 drugs except Ibrutinib.

Imbruvica gave me a itchy bothersome skin rash, so we stopped that in 2015 after 9 months.

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in 2022, Calquence / Acalabrutinib - the next generation of Ibrutinib had some mild headaches for 4-6 weeks, and short (20 minutes) bouts of Gastro / Diarrhea a few times per week, vs a few times per month on Venetoclax only.

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The Calquence added to Venetoclax has lowered my MRD to 0.07% in just 3 months (from 1.3% in January 2022).

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I feel fine, especially when my 74 year old body is not pushed past its limits by my 40 year old mind.

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Len

[CycleWonder in reply to lankisterguy]

I love your statement :”especially when my 74 year old body is not pushed past my limit by my 40 year old mind.”

That made my day!

[BobbyFour in reply to lankisterguy]

That is great to see your progress! And your long journey even with fairly aggressive CLL is inspiring! (And comforting!)

[Denisguay in reply to lankisterguy]

I can't find your history in this link.

[lankisterguy Volunteer in reply to Denisguay]

You can click on my round picture icon or follow this link- healthunlocked.com/user/lan...

[may04cll in reply to lankisterguy]

any thoughts on this . youtube.com/watch?v=DgL9Oom...(Not working as expected?)

[CLLerinOz Administrator in reply to may04cll]

A recent mini review article also addressed some of the questions about how best to treat patients who are resistant/intolerant to both BTK inhibitors (eg ibrutinib) and BCL2 inhibitors (eg venetoclax).

This post has further information:

healthunlocked.com/cllsuppo...

[rcusher]

I have been on for 4 1/2 years now, still doing great and am hoping for a few more years on it. Jack

[Dahlia7]

I was on it for 5.5 years before it stopped working.

[Denisguay in reply to Dahlia7]

And what do you do now?

[Dahlia7 in reply to Denisguay]

I’m on my third treatment since. Venetoclax LOXO 305 and currently LP 168.

[Ibru]

My husband has been on it for first line treatment for 8 years so far. Doing great.

[Denisguay in reply to Ibru]

is he always taking 420 mg daily?

[Ibru in reply to Denisguay]

No. He has been on 140 for many years. The reason is that he was put on diltiazem for afib. Diltiazem basically makes the ibrutinib “stronger” when they are taken together so 140 acts like 420 pharmacologically.

[Denisguay in reply to Ibru]

And afib It was provocated because ibrutinib or he was that before?

[Ibru in reply to Denisguay]

He got afib while on ibrutinib. He is 79, his sister has it, so maybe it was due to ibrutinib but can't say. A lot of people that age have it. His is not constant. Maybe one day a month for 12 hours. The diltazem decreased the frequency of afib to almost none. That is why he stayed on ibrutinib instead of switching to Calquence.

[PaulaS Volunteer]

This coming October it will be 5 years since I started Ibrutinib.

It's still working- my lymphocyte count is still coming down, though not reached "normal" range yet. Other counts (haemoglobin, platelets, neutrophils) are back to normal.

Paula

[Denisguay in reply to PaulaS]

5 years taking Ibru and dont you have lymphocyte in range?, That´s strange,

[PaulaS Volunteer in reply to Denisguay]

I agree - it is strange, but my docs are OK about it. My lymphs were over 600 (thousand) when I started Ibru, so they had a long way to come down!

I got nasty side effects when I first started the Ibru. After a couple of months, most of these disappeared, but some continued (eg stomach problems, rashes). So, my doc let me reduce my Ibru dose from 3 to 2 capsules daily (420 to 280mg). That helped but didn't entirely solve the problems, so later I reduced to 140 mg daily.

I've been on 140 mg for the last 3 years, and my bloods continue to improve, albeit very slowly. Latest lymph count was 9.99 - not bad!

Weight is also a factor, when working out doses of Ibrutinib. It's been said that it's OK to give 2.5 mg Ibru for every 1kg body weight. I was about 56 kg when I started Ibru, so 140 mg might have been all I needed at that time - not the 420 mg that I took (and got so many side effects from).

CLL is a very variable disease though. Some people have more aggressive CLL and may need higher doses. My markers are considered to be good (13q deleted, IGHV mutated).

Hope this helps, as you think through all these things.

Paula

[cajunjeff]

How long one does on ibrutinib, to my lay understanding, is variable. On average, people who take ibrutinib as a first treatment, do better than those who take it as a second or third treatment.

Extrapolating the data from one of the earliest ibrutinib trials started almost ten years ago, my guess is over half have will not have progressed with their Cll at ten years out. That’s amazing. Intolerance to ibrutinib seems to be a bigger problem than resistance. I think those who take ibrutinib as a second or third treatment, on average, get a five year remission or so,

Many people are first diagnosed with Cll in their sixties or seventies. Emerging evidence suggests that ibrutinib might be the only Cll drug some people ever need. By way of example, if a 70yr old Cll patient takes their first Cll treatment at age 72 with ibrutinib, statistically they are more probable than not to not be progression free at age 82. At that point, people are living normal life expectancies. That’s my amateur take.

[Denisguay in reply to cajunjeff]

I was only 55 when I was diagnosed , that means that 20 years after i Will stll alive!??

[cajunjeff in reply to Denisguay]

Well I’m just another guy with cll, not a prophet. 😎The current thinking with cll and the evolution of new meds is that most all newly diagnosed people with cll have a decent chance to die with cll, not from it.

We can also impact those chances by finding a good specialist, exercising, eating well and staying positive.

[Denisguay in reply to cajunjeff]

I think you are a prophet but you don't know it yet!

[Mic01747UK]

My husband was on Ibrutinib (full dose) for 6 years and 3 months before being taken off it in February because the haematogists felt it was behind various health problems he was developing, like inflammation in his eyes. He'll be getting his latest blood test results next week and are hoping that his blood count will stay good for a time yet.

[lankisterguy Volunteer]

Hi Denisguay,

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I saw this study report mentioned on another forum ([e-mail]) groups.io/g/CLLSLL/message/...

cancernetwork.com/view/paul...

Paul Barr, MD, Highlights Robust 8-Year Follow-Up Data of Frontline Ibrutinib in Older Patients With CLL

SNIP: Could you discuss the 8-year follow up data from this trial?

The median follow-up in that analysis is 7.4 years, so pretty mature follow up. [It] really gives us the understanding as clinicians that we need to be able to tell patients what to expect long-term from ibrutinib and other BTK inhibitors. At this timepoint, the 7-year PFS rate was 59% for ibrutinib and 9% for chlorambucil. Obviously, that’s a substantial difference but it’s just impressive to realize that, at this follow up matures, we still have not reached the median PFS for ibrutinib. We still need to keep monitoring this study so we can help our patients understand how long they can expect, on average, to receive the benefit of Ibrutinib and BTK inhibitors. We also found that for patients with higher-risk features, such as del(11q) and unmutated IGHV genes, the PFS rate was the same as those without high-risk markers. At the same timepoint, the OS rate still looks very good at 78%.

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This means that the patients still taking Ibrutinib after 7.4 years - 78% are alive - OS= Overall Survival and 59% have not had their CLL progress- PFS= Progression Free Survival

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Len

[Denisguay in reply to lankisterguy]

Thanks, this is good news! Do you know if there are tests, trials o essays that take one day yes and another no?