Question

[Agiledog]

If one responds well to rituximab/venetoclax w/o relapse, why stop the drug at two years?

Thanks,

Bud

[SeymourB]

Agiledog -

Because 2 years was shown to last several years, and not build resistance to the Venetoclax. So you have more options on relapse.

I'm not sure if they did longer studies for first time treatment that showed any benefit, either.

=seymour=

[Agiledog in reply to SeymourB]

Thanks, Seymour. I am completing 2 years on the BRUIN trial(my 3rd treatment after FCR, acala). Just thinking of next potential options. If I get two years w/o relapse I will be eligible for retreatment with V, or others available then(pirto? Degrader trial? CAR-T?) thanks again.

Bud

[skipro in reply to Agiledog]

Bud,

I had FCR for only 3 cycles due to neutropenia.

I'm 13 months into V + O, and due to side effects, sometimes wish I'd gone with Acala.

Just curious about your experience with the 3 treatments.

which had the worse side effects

which had the most long lasting side effects

what were your side effects with each

I ask because FCR gave me 2 really bad days per month, 4-5 so so days then 21 great days per cycle.

V + O was worse in that I was pretty sick for 3 months and have had 10 months of fatigue, extreme muscle and back pain, almost daily nausea and intermittant diarrhea.

Thx

skipro

[Agiledog in reply to skipro]

Skipro

I am very sorry to hear of your rocky ride on our carousel. My own journey has been side effect-free except for a mild ten minutes’ chills with the first rituximab infusion 12 years ago and current ongoing moderate diarrhea with venetoclax at almost two years in. But no dehydration or limitations. Never have had anything else, nor lost any functionality. Having followed this forum for ten years, my colleagues’ side effect accounts have left me most grateful for my extraordinary good luck. I do hope you are sailing smoother waters these days.

Bud

[Shepherd777]

My wife after just under a year on Venetoclax with 17P and TP53 quit the meds and had a 3 year and 6 month vacation before going back on Calquence. Calquence was not available at the time she quit. She is now glad the vacation bought her time with a better choice (Calquence) that works with less side effects.

[Agiledog in reply to Shepherd777]

Thanks, Shepherd. I am completing 2 years on the BRUIN trial(my 3rd treatment after FCR, acala). Just thinking of next potential options. If I get two years w/o relapse I will be eligible for retreatment with V, or others available then(pirto? Degrader trial? CAR-T?) thanks again.

Bud

[cajunjeff in reply to Agiledog]

Bud, maybe try the transfer portal? LSU med school might have a clinical trial and pick you up. :). (Inside joke between me and Bud).

[Agiledog in reply to cajunjeff]

What a hoot, you rascal! I’ll intercede on your behalf for the bad Karma surely headed your way!

Bud

[skipro in reply to Shepherd777]

Awe I'm interested in her experience.

So are you saying that Acala has a lot fewer side effects than V.

I had FCR and although had about horrible days per 28 day cycle, felt great 21 of 28 days.

I've been on V + O and was sick for 3 months then left with tons of fatigue, back pain, muscle pain, daily nausea etc for 10 months.

I am supposed to go 2 years because I'm RR, but am thinking about stopping due to quality of life, and just doing Acal. when I relapse.

So Are you saying Acal was a lot easier than V + O

Thx

Skipro

[Skyshark in reply to skipro]

You can't rely on how any person reacts to these drugs. The side effects are not uniform person to person or drug to drug. The trials will report numbers that have various side effects but it's a coin flip or dice roll whether it affects you.

Thou people that were doing OK on capsule Acalabrutinib and have GI problems on tablet may want to switch to capsule Zanubrutinib.

[Agiledog]

Thanks, JMe. I am completing 2 years on the BRUIN trial(my 3rd treatment after FCR, acala). Just thinking of next potential options. If I get two years w/o relapse I will be eligible for retreatment with V, or others available then(pirto? Degrader trial? CAR-T?) thanks again.

Bud

[LeoPa]

Because they cost a ton of money and other patients might need it? insurance companies have no right to print money.

[Agiledog in reply to LeoPa]

Yep. Ton of $. Thanks, LeoPa

[Jm954 Administrator]

It's 2 years because that is what was used in the original trial and the evidence that was used for this regime when it was assessed for efficacy.

In the UK there is the option of continuous Venetoclax instead of V+R but it's not often used.

If and when you relapse it might be worth trying V again before an untried new trial drug but in the USA there are several options available to you including CAR-T and SCT.

[Agiledog in reply to Jm954]

JM, thanks. Thats what I had been finding as I look around. Wasn’t much experience out there beyond two years. My doc has suggested pirto, maybe CAR-T, but not broached SCT. I’m just checking around about maybe more V since I wonder whether at 80 I could manage CAR-T side effects. We’ll see. Thanks very much for all you do for us here. And I truly hope you are having an easier ride these days.

Bud

[Smakwater]

Why turn the oven off when the cake is BAKED?

Just tryin to bee Funneee.

JM

[Agiledog in reply to Smakwater]

Thanks. A little humor gets a big plus in this territory.

Bud

[Big_Dee]

Hello Agiledog

After one year of venetoclax with nausea/vomiting/diarrhea 2-3 times a week, I was quite happy to finish one-year requirements. Blessings.

[Agiledog in reply to Big_Dee]

Big D

You make me feel blessed, indeed, having only the big D side effect myself. Keeps me “loose”, so the speak. Bud