which is best the pill for life or the iv treatment for remission

[larrcow]

which is best the pill for life or the iv treatment for remission

[Lisabeth50]

I’d be curious of others opinion as well. Seems these two options will be offered as part of my treatment plan too.

[Ellieoak]

I am not sure what you are asking. It depends on what you’re deletions are , weather you are mutated or unmuted, what your WBCs , RBC etc . You will as of today Never get a permanent remission. You will get a partial remission when on that proper drug. It is sad to say, but CLL is not cureable. Stay safe. Anna

[annmcgowan]

I think Jammin is correct. It is my understanding that one of the aims of specialists in CLL is to come up with a treatment order. I don’t think they are there yet. It won’t be easy with so many treatments options on offer and many in the pipeline.

I am sticking with my first treatment ibrutinib until it stops working as I was told first treatments give the longest remissions.

Ann

[stevesmith1964]

Obinituzumab and Ibrutinib, 6 cycles then twice daily alcalibrutinib. Got me from stage 4 100% infiltration to uMRD in 240 days... have been in remission for 30 months, monthly bloods remain stable.

[Wishing1202 in reply to stevesmith1964]

If you don't mind sharing, what are your markers?

[stevesmith1964 in reply to Wishing1202]

Don't know, not interested to be honest. Both me and my wife worked the blood Cancer space for over 10 Yr each...my CLL diagnosis was massive relief and positively recieved as the initial blood film showed something far serious. My CLL doesn't affect my life too much, apart from monthly bloods and odd cycle of IVIG and GCSF when I need them. I am 60 and a full dad to my youngest 2 who are 6 and 4.

[CoachVera55]

Its based on your preference & lifestyle. Some want to shoot for the short term treatment with a long durable uMRD period & others are more inclined to just take oral medication until it doesn’t work anymore. But I do believe we’ll all need to switch up for longevity 🤷🏽‍♀️

[LeoPa]

Depends from the results of your fish test. For some, BTK inhibitors are better. For others Venetoclax is better.

[Mtk1]

I think it will be dictated by your individual circumstances, I was initially going to start V&O but because of another cancer treatment I had to start with acalabrutinib, after a shaky start with heart problems I am now 2 and a half years on acalabrutinib and doing ok.

Dave.

[Mtk1]

Spot on.

Dave

[Muddywater]

As others have said it’s really down to individual circumstances. I was given a choice between V&O or Acalabrutinib and choose the latter because it suited my personal situation. Ultimately there are no guaranteed quick wins with CLL. Listen to your specialists, weigh up all the pros and cons, decide what’s best for you and place your bet. I’m a year in with Acala, bloods stable and living a near normal life.

[Katie-LMHC-Artist in reply to Muddywater]

I was given a choice too. The pill twice a day works for me because I still work and don’t have to be seen as often. By the way….I love the name you are using! I’m a big Blues fan!! Muddy Waters! Father of Chicago Blues!!! 🎸🎼

[fraxus1]

If you read the most recent NCCN guidelines, whether 17p or not, first-line therapy is either (1) obinutuzumab+a BTKi (like acalabrutinib) indefinitely, or (2) Venetoclax (a BCL2i)+obinutuzumab for a fixed duration (typically 1year). If no 17p deletion, then you can also consider a chemo-immunotherapy (like bendamustine and rituximab), but I'd get a second opinion on any CIT regime for CLL. Also consider clinical trials. Obinutuzumab is an infusion - no pill form!

[MovingForward4423]

best to speak to your CLL specialists. Too many parameters to consider.

[Skyshark]

A right vexatious question especially after a number of recent reports that mean nearly everything is up in the air (again).

Tablets for as long as you can take them are BTKi drugs, Ibrutinib, Acalabrutinib and Zanubrutinib. They give a medical remission of symptoms until intolerance or progression. This is called "maintenance" not drug free remission. The numbers stopping treatment for either reason are about even. A recent report found that stopping for progression tended to halve the duration of effectiveness for subsequent treatments. Obviously can't be re-started if stopped for progression or acute event such as heart conditions. If intolerance is side effects like nausea or diarrhoea a switch to one of the other BTKi's may solve the issue. Probably the best choice for uCLL with 17p deletion.

The IV Obinutuzumab and Venetoclax tablets (V+O) for 11 months offers a drug free remission. All mCLL do well on this, uCLL without del(17p) don't do as well as mCLL and uCLL with del(17p) don't do well. Recent reports have indicated that MRD directed treatment is required for uCLL but for those that never reach uMRD4 this would effectively be a continuous treatment and del(17p) is still a problem. 78% reach uMRD4 by end of treatment, most of them by cycle 7.

UK NHS also offers 14 months of Venetoclax + Ibrutinib, a tablet only treatment. This has similar results to V+O, mCLL without del(17p)/TP53mut do a little bit better but that may just be because the trial was limited to under 65's while the trial for V+O was for patients that were older, mean age 71 and unfit for FCR/BR. 51% reach uMRD4 at 12 months, 57% at cycle 15 but on continuous MRD directed treatment nearly 30% don't reach uMRD at 3 years, mainly those that are mCLL that would do well regardless of uMRD.

BR is now in the trash can, along with Clb-Obi. It was dropped from UK BSH guidelines in 2022.

themedicalxchange.com/wp-co...

FCR chemo is still an effective treatment for 50% of "fit" uCLL patients under 65, without del(17p)/TP53mut. Doctors and patients don't like chemo.

[Mtk1 in reply to Skyshark]

I’d just like to clarify 1 point you made about not restarting after acute event, in my case when I started acalabrutinib I developed heart troubles and suffered a heart attack and received 2 stents, I stopped treatment for a while but then restarted initially on half dose, then full dose after 3 months and been on treatment for nearly 2 years post MI. I was also on a treatment for bladder cancer and did have to stop that as the combination was too much.

Dave

[Skyshark in reply to Mtk1]

Must say I'm surprised when other people, after an initial offer of Zanu was made, are being told that considering their heart condition they should have V+O .

[MisfitK]

As far as I've seen, the question only has a tentative answer for 17p.

For now, this group (including me) is still on "pill for life", while more trials are occurring to see if there's a path around that. I'm hopeful there is, but prepared if there isn't.

[spi3]

I think it depends on the individual and the type of CLL - my hubby was TP53 muted and 17p depleted and had all 3 obinutuzumab/acalabrutinib/Venetoclax for a specific time duration-he is doing so well

[Smakwater]

larrcow,

There are some what if's and individual objective variables disguised in the "which is best" part of the post question.

For example, let's say one chooses the pill and the pill is a discontinuation drug that produces an early complete response remission. Well then, one might say in one measure that the objective of preventing financial toxicity has "best" been met because the cost of treatment has been minimized. This only remains true given that the remission is durable and one does not develop a resistance (time relevant).

In my view, to answer this question we should consider the whole of our diagnosis individually which includes our individual health profile. We should combine the diagnostic/prognostic information with both our treatment goal(s) and the measure of what we expect from the apparent best choice of treatment to meet all considerations.

Even when the utmost consideration is given, we are basing decisions on statistical probability. Fortunately in our era we have many good choices and most of these probabilities are very good.

One of my favorite objectives is quality of life, therefor some of my considerations were to minimize treatment toxicity, and adverse side affects. Most importantly, I did not want to leave my wife with a insurmountable financial burden.

In short - The best treatment is the treatment that is best for you.

JM

[larrymarion]

In addition to the variability in treatment due to the variability of our disease--different markers, etc.--keep in mind that "pill for life" is not actually how the BTK treatment protocol is playing out these days for many patients. Since we can develop resistance to the drug, as well as get overwhelmed by the side effects, many hemocs will tell patients to stop after X years.

Again, it all depends on your markers, response to the drug, which one you've taken, etc.

Just stopping happened to me, after five years on Ibrutinib. I had plateuaed--my CLL was hardly there and the side effects were driving me nuts. Then venetoclax was approved and i went on that for 16 months, until uMRD. That lasted almost three years. Sometime soon i'll resume treatment. Maybe pirto+V? Not sure yet, depending on research.

As for weighing a BTK vs. obinituzimab, that's a long discussion with your hemoc. Lots of pros and cons, depends on ...you know the rest of that sentence.

And after that discussion with your hemoc, get a second opinion.

[Skyshark in reply to larrymarion]

If you didn't stop for progression or AE you can still use another BTKi with less or different side effects, Acalabrutinib or Zanubrutinib.

The recent post of video from CLLGlobal research Dr Wierda, MD Anderson cancer centre called the continuous BTKi treatment "maintenance" and not remission.

healthunlocked.com/cllsuppo...

[larrymarion in reply to Skyshark]

yes, that's true, but another BTKi won't give you uMRD unless you're one in a million. My hemoc didn't want me on any BTK because i travel to exotic places. He didn't want my low platelet count (chronic bleeding issues, etc.) to become a puzzle for local docs when on a photo safari in Tanzania, for example. His strategy was that i should get off the BTK, switch to Venetoclax and try for uMRD.

Also note that when i did the shift Z wasn't approved. One of my other hemocs had suggested i switch to the then newly approved A but my primary hemoc said let's go with V. Turned out to be the right strategy for me.

[Amberesque]

I have been on acalabrutinib for three years now. I have a lot of side effects and feel unwell much of the time but I stay on it as my only next option is V&O and I'm trying to extend the time until I get there.

I guess the answer to your question will be different for everyone especially as this disease varies so greatly from person to person.

[SERVrider]

I was to have Obinutuzumab and Chlorambucil but the knock-back on my immune system would coincide with the predicted peak of SARS-Cov2 so my haematologist advised a deferral. She then got me onto Acalabrutinib (before it was licensed in the UK) which I have now been on for nearly 3 years. I have raised with her the possibility of, say Venetoclax + Obinutuzumab but her advice is to keep with the Acalabrutinib until/unless it ceases to be effective and only then re-think. As I tolerate the Acalabrutinib with no problems, that seems to be wise counsel. A frank talk with your CLL consultant would be the best solution for you.