From monotherapy Ibrutinib to monotherapy Venetoclax

[Green202]

Hello,

How is the process of switching Ibrutinib to Venetoclax? Is there any person who has that experience?

[lankisterguy Volunteer]

Hi Green202,

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Yes, I did that.

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My doctor stopped Ibrutinib and waited until my CLL progressed enough to need treatment.

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Here are other postings about starting Venetoclax and Obinutuzumab (Gazyva)

*Starting V & O treatment on Monday! healthunlocked.com/cllsuppo...

*Started Treatment (O + V) healthunlocked.com/cllsuppo...

*Starting V+O - any tips to prepare for treatment? healthunlocked.com/cllsuppo...

*Ugh... Downhill fast, V+O treatment starts asap healthunlocked.com/cllsuppo...

*Treatment (V+O) update healthunlocked.com/cllsuppo...

*Starting V & O combination therapy healthunlocked.com/cllsuppo...

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In fact there are 43 postings that mention "Starting V & O" here:

healthunlocked.com/cllsuppo...

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And 1,987 that mention "Starting Venetoclax": healthunlocked.com/cllsuppo...

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Len

[zaax in reply to lankisterguy]

How long were you off Ibrutinib before you had to start on Venetoclax

[lankisterguy Volunteer in reply to zaax]

Hi zaax,

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6 months, but I think the average is about 2 years.

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You can see the long version here: healthunlocked.com/cllsuppo...

or

Here: healthunlocked.com/user/lan...

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Len

[Peacekeeper]

I failed Ibrutinib and stopped it whenI was put in hospital with really zero neuraphils (0..05). I had viral pneumonia as the Ibrutinib had stopped working. My doctor arranged me to get venetoclax free under compassionate grounds and I started it 5 weeks after being admitted once the pneumonia was cleared up.

Now at 3.4 years on it and on 2 tablets as it affects my platelets and neutraphils. Been MRD-u since 12mths and last bone marrow really normal as one could get. My disease is always in the marrow and blood work only rises if the current treatment fails. So I really had 5 weeks swap over. Stopped Ibrutinib cold.

[Katinlr in reply to Peacekeeper]

Has your doctor suggested stopping the venetoclax since you are uMRD?

[Peacekeeper in reply to Katinlr]

No I have as I noticed most seem to stop at 12 or 24 months or at MRD-U. He said would not be able to get it free or acces Government scheme as had it before and as I am on a reduced amount he is keeping me on it.

[Haileybury]

I did that too. Very easy. No problems at all. Venetoclax worked really well for me for nearly 4 years. Now switched to Acalabrutinib. All the best.

Haileybury.

[Green202 in reply to Haileybury]

Hi,can you please explain how you started Venetoclax and what dosage and how you stopped taking Ibrutinib in this time and how long did it take? Was there a schedule to change medications .

[The-Man-with-a-Plan]

Green202My sister recently went thru the transition from monotherapy Ibrutinib to monotherapy Venetoclax. (She was starting to fail the Ibrutinib.) Her hematologist wanted her to take both meds simultaneously for a relatively short period of time then transition to Venetoclax only. The goal - slowly down-dose the Ibrutinib while increasing the dose of Venetoclax. Unfortunately, she experienced some notable untoward side effects within the first week. They became almost unbearable by week two. She did her best to soldier thru these side effects but to no avail. The hematologist took her off the Ibrutinib sooner than planned. The good news - the side effects all but disappeared within a week once she stopped the Ibrutinib. Today, she is on standard dose Venetoclax - 400mg QD, doing VERY well, and uMRD.

Good Luck.

MWP

[Green202 in reply to The-Man-with-a-Plan]

Thank you. is it common to stop taking Ibrutinib immediately and start taking Venetoclax 100 mg?

[The-Man-with-a-Plan in reply to Green202]

Don't know. Just sharing with you what my sister told me.

[Green202 in reply to The-Man-with-a-Plan]

Thank you

[Katinlr in reply to The-Man-with-a-Plan]

I’ll ask you the same question I asked Peacekeeper. Has there been any discussion with your doctor about discontinuing the Venetoclax since she is uMRD

[The-Man-with-a-Plan in reply to Katinlr]

Hey KatinlrMy sister is the one taking Venetoclax. I'm still W&W.

There is a time limit.

It's either 18 or 24 months. I can't remember which.

MWP

[Katinlr in reply to The-Man-with-a-Plan]

Thanks. I know that there is a lot of variation as to if/when Venetoclax is discontinued. Some use an arbitrary time such as 12/18/24 and in other cases it is based on MR status.

[17Pisme]

Please check my past posts.

[Mldeterm]

I'd personally not stop the ibrutinib until you are ramping up on venetoclax because for many the stopping of ibrutinib causes symptoms and disease bulk to come roaring back. My husband did a combo trial including the two and had a great experience.

[Green202 in reply to Mldeterm]

Hi, Your information is very valuable. Has your husband followed a schedule to switch Venetoclax to Ibrutinib. Grateful if you share that experience

[Mldeterm in reply to Green202]

He was on I+O+V trial. It was 19 mos total and had I+O starting together with 19 mos of I and 6 mos of O, then adding Ventoclax for 12 mos starting in month 3, and then a final 3 mos of Ibrutinib alone at the end. He was uMRD at the end of 19 mos and stopped all meds in Oct 2020. So far so good with no progression.

[Green202 in reply to Mldeterm]

What do I + O + V and uMRD mean and what dosage?

[Mldeterm in reply to Green202]

I+O+V = Ibrutinib, Obinituzimab and Venetoclax.

uMRD = unmeasurable minimum residual disease. His blood and bone marrow were tested after treatment and no remaining CLL was found.

All doses were standard, I think Ibrutinib is 420 and venetoclax started small at 25 and ramped up to 400.

[Green202 in reply to Mldeterm]

Thank you

[cahrmlo1]

I was on Ibrutinib for a year and half and counts came down slowly but never normalized and side effects ie bruising, fatigue, were manageable but why have them if its not working; so MD switched me to Venetoclax which effectively took down my counts. Had uMRD labs drawn after 2 years of treatment and it was negligible; thats when I made a conscious decision to stop treatment all together and see what happens. That was October 2021, I was followed with monthly labs for 3 months, ( everything remains the same ) now every 3 months. Next lab draw April. I also, unlike most, refused the Covid vaccine due to my sincerely held religious beliefs, woke up Christmas Day with Covid ( the irony ) I did not test then as I knew what it was and honestly ,treated myself for 2 days with Tylenol and Motrin around the clock. I took antigen test Day 4 which was positive and promptly lost taste and smell; thats when I started with daily dosing of recommended supplements Zinc, Mag, D3, Quercetin, Vit B and Vit C. Day eight I re -tested ( antigen ) still positive , only complaint were still sensory and fatigue. By day thirteen I was still lying around thinking " I don't know how I feel anymore" the mind can be a menace ! I took my third antigen test on day fourteen which was negative and got my lazy @#$ up just in time to shovel a foot of snow that had fallen. For the record I was diagnosed Oct 2013 at age 56; on watch and wait until May of 2018 when I started Ibrutinib. Only other medical history I have is cerebral aneurysm which were successfully clipped in 1991 and intermittent complaints that labs show as different auto immune diseases when symptomatic. I am Blessed !! Thanks for listening as I just realized I very seldom talk or think about my CLL.

[Green202 in reply to cahrmlo1]

Thank you cahrmlo1 for sharing your experience. Do you remember the dose of Venetoclax you took from the beginning and how long did you take both Iblutinib 420 mg and Venetoclax until you switched to Venetoclax in total?

[cahrmlo1 in reply to Green202]

I was weaned off Ibrutinib days before starting Venetoclax. The Venetoclax was ramped up over the course of 1-2 weeks to 400mg. I recall. about a month in I developed an upper respiratory infection and dropped back to 300mg. The last year I was taking 200mg daily and stopped completely like I said in earlier post October 2021.

[Billarina]

I went from Ibrutinib to Venetoclax within a couple of days. I had what can only be described as a drug withdrawal from Ibrutinib, sweating, fever and vomiting- it only happens to a small amount of Ibrutinib users. Due to Ibrutinib failing me I was switched fairly quickly- almost about to come off Venetoclax after a 2 year combination trial with Loxo 305

[DelrayDave]

After 6 plus years on ibrutinib, my doctor tested for mrd. The result showed .2%, well above uMRD of less than .01%. Due to side effects of ibrutinib and hope of a limited time on venetoclax, I began venetoclax monotherapy. Some good results: edema went away; neutrophils and platelets went up to normal; arrhythmia greatly reduced. New side effects started, then were reduced: nausea, weight loss, increased pulse rate, transient increased temperature below fever level.

Then hemoglobin trended down and doctor stopped the venetoclax.

Then I was hospitalized with gallbladder pain. I had surgery. That, or something, crashed the hemoglobin and neutrophils further. I am now still off venetoclax. Numbers are a bit better.

Bottom line: each of us are different. The surgery is unique to me and who knows what caused what. But perhaps some of my experience may be of help.

David

[Jooby59]

I took Ibrutinib for 9 months but had a rare side effect where it affected my eyes. Consultant took me off it and 10 days later I started ramp up for Venetoclax. There was no problem at all.