What happens after venetoclax treatment?

[Mav74]

My relative is coming up on one year of being on venetoclax. What is the next step after the treatment is over? A little uncertain of the path forward. Does everything just stop after treatment and it’s a watch and wait game again?

[cllady01 Former Volunteer]

The following is in regard to stopping V+R treatment in R/R patients. The quoted paragraphs are near the bottom of the article, under the title of Fixed-Duration

Treatment. It is possible (depending on individual patients) to stop treatment, W&W, and have Venetoclax standing by for further treatment.

There will be testing for Minimal Residual Disease, most likely both blood and BM, which can help to make a decision to stop the treatment for now, again, depending on the individual patient situation.

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

"- Venetoclax and rituximab is the only effective chemo-free approach for the treatment of R/R with a fixed duration (up to 24 months) schedule capable of inducing a response in virtually all cases, with a majority of patients attaining an uMRD in the PB and BM. A complete response was observed in a minority of patients due to a small residual size (<30 mm) adenopathies. Even though the durability of response needs to be established with a longer follow-up, preliminary data on patients attaining an uMRD are unprecedented in this setting of patients. Importantly, preliminary data on few patients indicate that responses can be observed when venetoclax is resumed at disease progression after cessation of treatment.17,33 The safety profile at a 30-month follow-up is reassuring, and fixed-duration treatment will translate into a lower incidence of treatment-related adverse events compared to continuous treatment."

[Mav74 in reply to cllady01]

Thank you. That is helpful. Have there been people with good remissions after the fixed duration of venetoclax?

[cllady01 Former Volunteer in reply to Mav74]

The experience is new, so the length of time is not something that is reliable yet, I believe the chart shows a 3 year Progression Free Survival for V+R for a % of patients.

It is a tricky business to prognosticate, even for the Drs. so nothing set in stone as we all know from our own situations.

Hoping for good reports for your relative and a long remission.

[Mav74 in reply to cllady01]

Thank you so much for the info. Yes me too. They’ve been doing good but just started wondering what’s next in the future and that can be scary I think.

[cllady01 Former Volunteer in reply to Mav74]

Mav, yes, any unknowns are scarey but as we adjust and take one day at a time, we can find a bit of ease/peace. We usually are able to take whatever comes, once it gets here---it is that not knowing (the anticipation even when there is nothing to anticipate in actuallity, we make up something)--that throws us.

The mind can torment us, if we let it. The mindfulness idea is one I try to turn to in my times of worry. If right now is ok and there is nothing I know is going to happen, I try to go about my business as usual. It isn't foolproof, nor easy always and we do need to release the fears sometimes in tears or rants which can help us see ourselves for what we are--human and vulnerable.

Who wants to admit that? : )

[Mav74 in reply to cllady01]

So true!! It’s hard as an outsider because they look so good and are loving a normal life but then thoughts come in and the vulnerability to the unexpected hits. I just hope the medicine gives a long remission for many people.

[Sushibruno in reply to cllady01]

This is exactly what I'm going through right now😢 . the unknown is playing tricks in my heads. MY ANXIETY LEVEL IS REALLY HIGH. i hope these meds kick in soon.

[Mav74 in reply to Sushibruno]

I know the unknown is scary.

Anxiety is a crazy thing and our thoughts can run amuck. It’s important to remind yourself that those thoughts are really just fears. If you like your dr, trust them. I hope the medicine does kick in for you soon. There might be a few bumps in the road.. but not one person in life is exempt from that. From what I’ve read people seem to do okay with cll for the most part. Make sure to enjoy every day of your life.. even with cll, it’s still a great one.

[Sushibruno in reply to Mav74]

Thank you so so much i want to become stronger and not let cll define me which is what I'm feeling right now. I don't know what happened to me i was doing good but after i lost my dogs, my anxiety came back with a vengeance.

[Mav74 in reply to Sushibruno]

Im so sorry your lost your pups. It’s understandable that loosing them and the love and got comfort they gave you opened up feelings of vulnerability and anxiety. It will be okay.

[Sushibruno in reply to Mav74]

🙂

[Smakwater in reply to cllady01]

Sorry in advance, although I try not to be over zealous I am known as one of the positivity tyrants.

My goal is to not get hit by a car between now and whenever. Rest assured, if this happens, I will be smiling.

JM

[Hidden in reply to Mav74]

the biggest issue for all the novel drugs is that none of them=including ibrutinib-which has been in general use the longest-have been around for a long time (relatively). just not enough long term data

[Mav74 in reply to Hidden]

That’s that unknown factor, I guess, that gets a little scary at times

[Smakwater in reply to cllady01]

This one's for scottxxoo.

"Kind of like eating a good meal, You don't know how it will come out".

Enjoy the dinner, and maybe a glass of wine.

JM

[AdrianUK in reply to cllady01]

Note that they are saying that this drug does a great job of clearing the bone marrow and blood but sometimes leaves traces in the lymph nodes .... hence the idea of using it with a drug like rituximab or even more experimentally Ibrutinib since those drugs DO clear the lymph nodes. Indeed if you use Ibrutinib to

Drive all the cells into blood venetoclax can presumably kill Them Quickly. Should say tho that particular combo is still being studied

[Mav74 in reply to AdrianUK]

Do they say what to expect when treatment is over? Sounds like it’s just watch and wait till it comes back again?

[Jm954 Administrator in reply to Mav74]

Mav, yes it's back to watch and wait after treatment but hopefully the waiting for you will be a very loooooong time ......

Jackie

[DriedSeaweed in reply to AdrianUK]

They probably will discover combinations of markers when this does and does not work best. High cd49d expression makes it harder to encourage them to leave the nodes with say ibrutinib. It will be interesting to see what the workup is at diagnosis in a decade.

[Jm954 Administrator in reply to DriedSeaweed]

When I met her recently at a meeting, I asked Dr Lamanna if she screens people prior to Ibrutinib for CD49d and she said yes she does as it can influence her treatment decisions. Not sure this is common practice though it probably should be if there is a choice of suitable of Ven or Ibby

Jackie

[DriedSeaweed in reply to Jm954]

But does cd49d impact treatment decision yet? I did not get the impression there is much to do about it at this juncture.

[Jm954 Administrator in reply to DriedSeaweed]

Dr Lamanna said that she would probably opt for Venetoclax + R if she could and the patient was CD49d positive. I think your right about evidence, just her opinion.

[Mav74 in reply to DriedSeaweed]

I haven’t heard of cd49d... what type of marker is it and when do they test for it?

[Jm954 Administrator in reply to Mav74]

CD49d is a marker test for on flow cytometry like CD38, CD5 etc.

CD49d expression identifies cases with reduced lymphocytosis and inferior nodal response on Ibrutinib treatment and behaves as independent predictor of shorter progression-free survival.

This is the post I wrote some time ago and the reference:

healthunlocked.com/cllsuppo...

Jackie

[Mav74 in reply to Jm954]

Thank you! So it’s an important test that should be done at the end of the venetoclax treatment?

[Jm954 Administrator in reply to Mav74]

No, it's only relevant if you're going to have Ibrutinib.

Jackie

[Mav74 in reply to Jm954]

Oh. They tried ibrutinib and ended up having sudden cardiac arrest. Came back but took a while to recover. Been good with venetoclax .

[DriedSeaweed in reply to Jm954]

I think if there is high cd49d the individual might be more likely to have SLL? (Like me!)

[81ue]

The oncologist I have now does not even want to consider stopping venetoclax as an option for me. He wants me to keep taking it until it doesn't work. That was what I was told last week at my appointment. I've been on it 6 months so far and will approach the topic 1.5 years from now again. Maybe there will be enough convincing evidence out by then

[Mav74 in reply to 81ue]

At the one year point here and I think this doctor is following the murano trial where it was stopped after 24 months. There’s still a year left till the 24mo. Mark. Just not sure what to expect after that.

[Smakwater]

Mav74,

I hope that there is peace and confidence in the pursuit for a quality life for your relative and all of those around them.

JM