Going off venetoclax: My labs came back and it... - CLL Support

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Going off venetoclax

Lulu8581 profile image
24 Replies

My labs came back and it appears I am in total remission. (Hallelujah!) My oncologist said I could potentially go off venetoclax and if (or when) I have a recurrence I could go back on it. The research is sketchy because of the newness of the drug. Any thoughts? The decision is up to me but when I asked him what he would do, he said he would go off it if it was him.

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Lulu8581 profile image
Lulu8581
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24 Replies
Superdad3 profile image
Superdad3

Great news hoping for an never ending remission!

annmcgowan profile image
annmcgowan

Great news, well done.Ann

Pacificview profile image
Pacificview

Excellent!!!!!! So happy for you! What a lovely decision to have to make. Wonderful that you have that option! Great encouragement to me as I am in the slow climb watch and wait stage.I am loving the limited duration drug options!

HopeME profile image
HopeME

Hi Lulu: Did they test for to see how many if any CLL cells you have in your blood or bone marrow? I’m curious if the doctor takes this into account before taking a patient off the drug. Also, did he give you any idea what he will try next if the CLL comes back in the future? Venetoclax again I presume? If it were me I’d also opt to come off the drug for what it is worth.

I’m hoping you have a long, long remission.

Best

Mark

Lulu8581 profile image
Lulu8581 in reply to HopeME

They did not test because I would have to go to a research center and he is just going by the CBC results. He said I would go back on venetoclax if it comes back but there are no long term studies on the efficacy of going back on venetaclax. I was initially taking400 mg (for 10 months) but recently dropped to 300 due to neutropenia which corrected by reduction to 300.

Smith123456 profile image
Smith123456

whatdose are you currently taking, yiu could try gradually going off

Lulu8581 profile image
Lulu8581 in reply to Smith123456

That is an option but the oncologist was worried about the occurrence of resistance as occurs with taking low does antibiotics. Obviously, not enough is known about this incredibly effective drug.

LovelyLilyGirl profile image
LovelyLilyGirl

Congratulations.

Ghounds profile image
Ghounds

I'm very pleased for you. Wishing you a long and healthy remission.

mickimauser11 profile image
mickimauser11

there is a trial venetostop and an Interview on cllsociety.org Im also in remission and on Venetoclax look how Deep your remission is

Lulu8581 profile image
Lulu8581 in reply to mickimauser11

Thanks for pointing me to the article. It helped me make my decision to stay on venetoclax, at least for another year. It can't hurt

Sepsur profile image
Sepsur

That’s great - I’m in the same place but at present I have to follow trial protocol

Lulu8581 profile image
Lulu8581 in reply to Sepsur

What is your trial protocol? I am not in a trial. Have they said how long the duration of treatment is proposed?

Sepsur profile image
Sepsur in reply to Lulu8581

Yes but it is dependent on hitting certain targets within a time frame. Always unique - lockdown buggered up protocols & timings.

My last letter stated I needed BMB in a month, another 3 months after that - then they will look at dropping meds.

Newdawn profile image
NewdawnAdministrator in reply to Lulu8581

I’m on the same Flair trial as Sepsur and have just been declared uMRD. Because it’s a trial, the results are from both peripheral blood and bone marrow (from a BMB). Just as an aside, my full blood counts have been normal for a very long time even when my bone marrow was still registering slight infiltration so the testing is very important.

On the Flair trial, you’re required to continue taking the V for the equivalent period that it took to reach uMRD so in my case it’s 18 months. I’ve negotiated a reduction to 300mg due to joint and kidney issues (though no clinically definite association has been made). On the trial, we can go back on the Venetoclax if we relapse within a 6 yr period.

I think you’d feel in a better position to make a decision if it were based on a BMB but it could be you’ll never require further treatment or, by the time you do, Venetoclax may have been superseded by an even more effective medication!

Whatever you decide, it’s a good position to be in! 😊

Newdawn

Lulu8581 profile image
Lulu8581 in reply to Newdawn

Thanks for the info! Its good to hear from someone who is actually part of a study. Good luck!

17Pisme profile image
17Pisme

How many total months have you been on Venetoclax?

Saddlemountain profile image
Saddlemountain

Super! Great news.... 👍👍

CLLBGone profile image
CLLBGone

Congrats...... excellent news.

I finished my Vent course December of 2020 and went off of it then.

I'm now on six month CBC monitoring which was predefined as my O&V was administered as part of a trial.

My doctor essentially said, don't worry everything looks fine, live your life, all things in moderation, and if anything changes we'll deal with it . . . . . . . basically, no meds & carry on . . . . . . I'll take it.

Best of luck with whatever choice you make.

ivy39 profile image
ivy39

Hi Lulu. I was in the same position about six months ago. All my bloods were in the normal range and my onc sugested, and I agreed, to stop Venetoclax. It is my understanding that additional mutations and reactions to the drug are most common after being on the drug for two years or longer. By going off venetoclax early, i.e. before two years have elapsed, the drug treatment can be resumed if and when you relapse. So I think going off Ven now would allow you to repeat the same treatment later. Venetoclax was totally trouble free for me that a repeat , if needed, would be no hardship.

Newdawn profile image
NewdawnAdministrator in reply to ivy39

Ivy, I’ll admit I’ve hear this theory you’ve mentioned bouncing around too… ‘It is my understanding that additional mutations and reactions to the drug are most common after being on the drug for two years or longer.’ However, I’m not sure if there’s any research evidence to substantiate it. I have read that the effects of Venetoclax plateau at 2 yrs but that’s a different thing to it causing harm with continuation. I agonised over continuing but the trial required me to and I’ve negotiated a dose reduction.

The issue for people who rely on the result of their CBC/FBC as evidence of full remission is the possible residual cells which could remain undetected. In that case continuation could positively drive the remission further and deeper but I admit, it’s a conundrum I’ve wrestled with (and still do). It has to be remembered that we have members who are successfully maintained on Venetoclax monotherapy long term and some genetic profiles require it because they are more prone to quicker relapses.

Newdawn

onu1tadi2 profile image
onu1tadi2

Congrats! Can I ask how long you were on Venatoclax and what kind of test was used to determine your remission or degree of remission? I ask because I was a year and a half on Ibrutinib, and now have been off for 5 months and all symptoms have pretty well gone (cramps for ex.) and I am still in remission. But I am going on Acalabrutinib now (half dose -- ie. one instead of two pills per day). I just don't feel a year and a half is enough to guarantee a long remission. Anyhow I really like hearing good news like yours.

Lulu8581 profile image
Lulu8581

I dont know what the definition of remission is for CLL but my labs came back perfect. I was on ibrutinib for a year then venetoclax for 10 months. After reading the newest research, I might stay on venetoclax for another year because of the newest findings.

809123 profile image
809123

There is a trial starting in the uk to randomise people to stay on and come off Ibrutinib when they are at MRD Negative. I would like to come off Ibrutinib if I get a complete response with MRD negative.

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