Breaking news form ASH conference: looks like Ibrutinib May be better than FCR for some patients

[Newchallnge]

#ASH18 #LBA | A Randomized Phase III Study of Ibrutinib (PCI-32765)-Based Therapy Vs. Standard Fludarabine, Cyclophosphamide, and Rituximab (FCR) Chemoimmunotherapy in Untreated Younger Patients with Chronic Lymphocytic Leukemia (CLL) | #leusm ash.confex.com/ash/2018/webpr…

[GMa27]

FCR put me in remission in 3 months. Ibrutinib for long long time. For me FCR was good choice.

[Lola69 in reply to GMa27]

I too was considered in remission after 3 cycles of FCR but the international guideline is 6 months .

When did u finish FCR & how long have u been in remission ?

[GMa27 in reply to Lola69]

I did IV- FCR from June till Aug. Had BMB to confirm. Nodes gone. Some experts don't feel need for 6 cycles.

In remission 3 months so far! Next blood test/ check up is in January. Hopefully a long remission for both of us!! 💕

[GMa27 in reply to Lola69]

You had 4 years of remission? Now ur on Ibrutinib?

[Lola69 in reply to GMa27]

I only had around 20 months remission. The neck node came back and doctor then put me on Imbruvica.

Here they do all 6 cycles unless you cannot tolerate the infusions

Been on imbruvica since February. 2016

Do you have the literature on the experts that dont think 6 cycles of FCR is necessary to reach complete remission?

[GMa27 in reply to Lola69]

No literature. 2 CLL experts told me that is their recommendation. I was thrilled to hear that. I was pretty sure I reached it when nodes were gone and blood work looked good. Was nervous for BMB results. Held my breath!

[Lola69 in reply to GMa27]

I never had a BMB

NOR a pet scan post FCR.

I WAS told I would get 5 years remission. I did not. My hematologist does not like to poke and prob.

Hopefully u will never need treatment. All the best.

[GMa27 in reply to Lola69]

Don't understand why they didn't give you PET or CT after FCR to see if nodes were gone. Some docs don't do BMB but I was glad to have it. Wanted to know what was going on in my marrow since mine was a bone marrow disease.

Interesting...

[Lola69 in reply to GMa27]

I live in Montreal , Quebec that’s why.

Budget

I was feeling good and doctor based his decision on how I was feeling

[GMa27 in reply to Lola69]

I see...very different in US.

I felt great all 12 years of W&W and all during treatment so that wouldn't have worked for me.

💕

[Lola69 in reply to GMa27]

In USA 🇺🇸 you pay $$ here it’s free I did get a PET scan when I relapsed though.

[GMa27 in reply to Lola69]

All my tests were covered by insurance. In USA everyone has different insurance coverage. I am fortunate to have very good insurance. I was a teacher so I don't pay any premiums. Most CLL experts work at research hospitals in US are more into pre and post tests. I had 2 CLL experts plus my local hematologist oncologist plan all my tests and guide me thru the process. Of course I had last say as to whether I would agree to their suggestions. Hopefully a "cure" soon! My dad had it for 30 years....this darn disease has been around way too long!

[Lola69 in reply to GMa27]

WoW! 30 years!!

dont know about a cure but hope the meds can keep it under control for a long long time.

[GMa27 in reply to Lola69]

He was dx around 62 and lived to 94 without any symptoms. Never needed treatment. That is why when I found out I had it, I was scared but realized my dad had it and was "fine". I didn't reach out to internet or sites till last September. Had no idea people could need treatment different times, how many different types of CLL and that people could have symptoms of pain, fatigue etc.... So I was spared 11 on W&W of being so consumed in my disease. Almost a blessing.

[Lola69 in reply to GMa27]

You are blessed

[J_88 in reply to GMa27]

Did your dad die from the CLL?

[GMa27 in reply to J_88]

No..but I am sure it added to his conditions...heart disease, diabetes...had congested heart failure for 5 -8 years. Was great till last month of his life. His organs began to slowly shut down.

[J_88 in reply to GMa27]

Did it effect his quality of life?

[GMa27 in reply to J_88]

No that was the amazing thing. He had a wonderful life. Kept up with blood tests....WBC would creep up very slowly during the 30 years. I assumed from that, that no one ever needed treatment from CLL. His twin had high red count. Never had treatment. So I was totally in the dark, which ended up to be a blessing, when I got it. I never told him. My mom found out few years before she died. He hardly ever got sick. Amazing...

[J_88 in reply to GMa27]

Awesome that's good to hear.

[rvles in reply to Lola69]

Hello Lola

I posted some documentation on the possibility of stopping FCR if MRD negativity is reached. It is here

healthunlocked.com/cllsuppo...

I was hoping to stop after my 4th cycle of FCR (July 2018), but was not MRD negative in the blood, so they did not test the bone marrow and I did the last two cycles of FCR, finishing in September. Still recovering from the treatments.

[Hidden]

Of course, everyone is different and responds differently to treatments. There usually isn't a one size fits all, but thanks for posting. Good information. I really don't think there is ONE best treatment for every person with CLL. Most of us have other disorders besides CLL and that plays a factor too.

[PaulaS Volunteer in reply to Hidden]

Hi Bluenet,

You're so right about many people having other disorders besides CLL, and it makes a difference to treatment choices.

eg People with heart issues have to be careful with Ibrutinib, as one of its side effects is atrial fibrillation. I had my gall bladder removed and have now been told my continuing gastric problems with Ibrutinib are made worse by bile reflux caused by lack of gall bladder.

It can get very complicated and we're all so different.

Paula

[Hidden in reply to PaulaS]

Thanks Paula. I didn't know having your gall bladder removed could cause problems with the Imbruvica treatment. I have gall stones - just had a sonogram - they were checking the liver and found gall stones instead! I have no pain from the gall stones. My family Dr. said about 96% of people are walking around with gall stones and if they aren't bothering me I shouldn't have my gall bladder removed. I will follow that advice. I really do not want any unnecessary surgery!!! Hope you find another treatment or can somehow continue with Imbruvica if you can. So many things we just don't/can't know!!! Take care.

[BeckyLUSA in reply to Hidden]

I can concur. Had gallbladder removed in June and started Ibrutinib in August. Bad gastro, plus liver issues.

BeckyL

[Wroxham in reply to BeckyLUSA]

Me too!

Sue

[Jm954 Administrator in reply to Hidden]

Good to get your gall stones removed if you can. Depending on the size they can cause obstruction of the bile duct and subsequent pancreatitis which is hard to treat and can be very serious.

Sorry to be a bit pessimistic but perhaps discuss with your Dr, they will know how many and how big they are.

Jackie

[Newdawn Administrator in reply to Jm954]

I can attest to that Jackie! Twenty plus years ago, I had a stone stuck in the bile duct and developed acute pancreatitis. Doctors often rate it as one of the most intense pains imaginable and believe me it is! I spent weeks in hospital and it was months before they were able to remove my gall bladder.

My gall bladder wasn’t diseased and I actually had very few stones but one little blighter nearly killed me.

Worth being mindful of that with gall stones although I suspect my experience was extreme and I’d had no previous indicators of gall bladder pain.

Newdawn

[Jm954 Administrator in reply to Newdawn]

I'm sorry to hear that Newdawn, pancreatitis really is a terrible thing and it's not usual for patients to end up in ICU with serious complications.

[Newdawn Administrator in reply to Jm954]

Yes they’d lined up a bed in the ICU for me Jackie but I snook out of my side room (complete with NG tube, catheter and IV drip on 2 stands), down to the Day Room to watch the tv instead which actually made one of the doctors scream! 😀

Newdawn

[Jm954 Administrator in reply to Newdawn]

That's the spirit that keeps us going Newdawn!

[Hidden in reply to Jm954]

Yes, I'm aware. I'm trying to remove them with castor oil packs and another method using Taurine, malic acid, etc. I'll see if I can do it again. I did this about 12 yrs. ago and it worked. They did an ultrasound and CT scan and it showed gallstones, after I did this treatment and told the Dr. I wouldn't have the surgery, he did the ultrasound and CT scan again and found they were gone. He still didn't believe me and wanted to send me for more tests, but............they were gone. He just didn't believe you could get rid of gallstones!! But the proof was the ultrasound and CT scan.

[Hidden in reply to Hidden]

Oh, I should have added that the administrators are free to remove my post above since I know that alternative methods shouldn't be discussed on here. Sorry.

[Jm954 Administrator in reply to Hidden]

No worries on this occasion bluenet, it’s an account of your experience.

[Lola69 in reply to PaulaS]

In 1992 I had a cholecystectomy

Been on imbruvica since 2016. No side effects and I also had ulcers

[Newchallnge]

Yes indeed. I am thankful we are even discussing and debating the role of new therapies vs some other cancers where the only option they have are older therapies and nothing impactful in the horizon.🙏

[J_88]

What was the outcome of this study?

[Jm954 Administrator]

The link doesn’t work for me I’m afraid.

[Newchallnge in reply to Jm954]

Sorry, I copied the title from Twitter, perhaps you can google the title and hopefully it will come up.

[Newchallnge in reply to Jm954]

Jm954, Try this link:

ash.confex.com/ash/2018/web...

[Jm954 Administrator in reply to Newchallnge]

Good article. I wish they had gone into the subgroups more but regarding the mutated/unmutated results, there is this interesting paragraph,

"In subgroup analysis for PFS, IR was superior to FCR independent of age, sex, performance status, disease stage or the presence/absence of del11q23. With current follow-up, IR was also superior to FCR for IGHV unmutated patients (HR=0.262; 95% CI 0.137-0.498; p<0.0001) but not IGHV mutated patients (HR=0.435; 95% CI 0.140-0.1350; p=0.07)."

[Newchallnge in reply to Jm954]

Great catch..for us MUTATED folks- I wonder if FCR was marginally better or significantly better. I am thinking if FCR is only marginally better....and we can avoid the toxicity and chance of getting other secondary cancers etc with FCR, on balance the new combination maybe better. But I guess it’s depends on how much better FCR is vs IR in the study. Also I’m biased and scared of chemo...

[avzuclav in reply to Newchallnge]

The way I read it... they're not saying the FCR is better than IR for mutated, they measured IR was better that FCR for mutated but not in a statistically significant way (since p-value > 0.05). Since the hazard ratio is 0.435, I read that as mutated patients were 56% less likely to progress on IR than FCR but there wasn't enough data to make the statistical claim.

[Floorfax]

Interesting to read the posts & comments about all the treatments! Being new to this game, my 1st question has to be - what the heck are the costs of these various treatments & how much actually comes "out of pocket"? Would love to get a picture of what I'm facing!

Thx;