I have not been active on Healthunlocked for the silliest of reasons; at one point I got a new cell phone and was unable to remember my password for the email I had been using, so started a new Gmail account with the new phone and couid only access my previous email when im on my wifi and come to this old phone where I stay logged on. I know that's as "clear as mud" (lol!) but maybe you get the jist of it.
Anyway...so here I am seeking some input, advise or just to hear from other(s) who discontinued/paused treatment due to achieving MRD for a while. So..When your Consultant suggested taking a break from your treatment (Venetoclax alone or Combo) where you quick to accept? Any relapse? How long? Did you go back to same Treatment? What would you do differently?
I realize there might not be that many in this specific situation either in general or following Healthunlocked, but it would still be good to hear from anybody with any knowledge about this or just general input.
Thank you so much and Best Regards to All
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Que-sera-sera
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My wife was on Imbruvica for about three months and then followed that with 11 months of Venetoclax. They did not not do MRD testing on her, but did say as all numbers were good for the last 9 months that she was in clinical remission. At that point we took a Venetoclax vacation and her numbers stayed in the zone for 3 years and about 6 months.
We have recently started back on Alcalabrutinib and her numbers are slowly heading down and toward the good zone area. Alcalabrutinib like Imbruvica works slower for us than Venetoclax so we may move over to Venetoclax in a couple of months. We were on Imbruvica alone and than Venetoclax alone.
I just have to give a BIG WOW on her numbers looking good after only 11 months on Venetoclax! I totally should know when my numbers started looking good, but I cant recall (im such an air head!).."Alls" I know is that it has been a while, but my Doctor always gave me the impression that it was better to stay on it, until suddenly now he's saying I can take a break if I want to, which kinda took me by surprise!
Your reply has already helped me though, because what I wanted to hear mainly, was that if numbers start acting up, we can "simply" go back to treatment and they "shall" improve (hopefully). Btw, I really like that you speak in plural, like its the two of you who are in this together, so she must be thrilled to have your support! Thanks much for repling 😀!
Like a vociferous terrier, either soooo cute or really irritating. My desk drawer still has a compartment for paper clips - in a variety of colours! Rarely used now, in fact the desk itself has become a small museum of "things unknown to the cloud".
I am on venetoclax monotherapy since Jan 2021. Testing Jan 2022 showed 12 CLL cells per million, so technically uMRD. Since I have an aggressive historically hard to treat variant, with a doubling time of around 4 months, my specialist wanted 2 full years before considering a stop. I am testing again mid December. If the number is zero, I will take a "drug holiday", with hopfully at least a year until relapse. If I can get a decent remission before resistance emerges, why not simply re-treat? I used the same antibiotics for my MRSA infections, it didn't become resistant in between infections. So I am looking at my CLL treatments the same way.
If the number 12 from my uMRD testing has increased, I will most likely add up to 6 obinituzumab infusions while continuing venetoclax. If the number of CLL cells is the same, IDK if I will just continue another year, or try adding the obinituzumab. I have a few months to decide.
As he explains it to me, the deeper one can get into remission/clear out detectible disease, the longer amount of time one is likely to have in remission. IMO there isn't a lot of hard data for the questions you post, because until this past decade with the advent of the newer meds, many of us with these aggressive, complicated variants just died. Now we aren't, but as we are among the first to continue to thrive, it's pretty unknown exactly what "might be best". So IMO no one really knows what "the best answer" might look like at this point in time.
Well...in my case im blaming G-mail (Google)...lol! They allow you to stay logged on with the phone that you use all the time, so since you dont have to use your password all the time you forget and when you get a new phone, suddenly you have to know it right away or know which other email or phone number you listed to recover it and if you even type anything wrong, it immediately thinks you're not the owner of the account!
So, I had to start a new one until I discovered I was still logged on in my old phone, but I dont always have it handy, or have to be on my "hotspot" etc, etc. Funny because its all supposed to be easier but seems more complicated...or maybe just for those of us "visiting" from The Past.....lol 🤪!
sorry...i had not seen this. Do you have (or have had) a gmail account? I ask because they have become very security-sensitive and anything you do "differently", their system immediately acts like you must not be the account owner and blocks you. I mean, for one, im sure it will ask for my original password, before it lets me do anything, which like I said I dont remember and it wont let me try but once/twice and it better be the one.
hi, sorry if you thought I was being facetious, I don't use g-mail although I have an account. I assumed it would have a forgotten password option like other sites, Terry
Wow...this is from 2 mos. ago and I'm barely seeing it! And No, I didn't think for a moment you were being facetious at all and I honestly asked if you had had a Gmail account, only because then you'd know they seem to be the most security oriented of the email accounts and frown on "false moves" and lock you out!
Yes, they definitely have the "forgotten password" option, which I'm sure I tried and still somehow didn't work, because you have to have given an alternate email address (or phone #!) to recover password and then have access to that too!
Whatever it was, it just didn't work and so maybe Gmail (Google) is more "protective" of your password, because then it affects how your're going to be logged on to everything else.... Your YouTube Account, your reviews, even Google pay which has your credit card, etc, etc.
Thank you for your reply and you mentioned deeper remission and I think that's what the Doctor spoke of and mightve been the reason why he kept me on veneto way after my numbers were already looking good (?).
And so yes, he said upon relapse we can go back to Venetoclax "or something else", which not sure why he said that, I guess its possible same med might not work as well again. Or maybe since I was on Veneto alone, maybe this time we can add Obinituzilab like you mentioned.
Anyway...getting both of your replies its already making me feel better about this.
I’m afraid I don’t have the answer to your question, but it’s a great question (and some great answers) so thank you 😊
My husband is about a year into Venetoclax… numbers all good… and we are just moving house, so a new consultant, who may have different ideas… we shall see!
The question I will ask, if it's suggested to me that I take a break from venetoclax, and I'm currently and hoping to stay on a low dose, 100mg a day, is why stop if it's working. Is it thought to be harmful long term or is it because it is thought to become less effective over time. If either or both, what is the evidence and how does that balance against the risk of stopping and then possibly having to restart. Questions for the future but I'd welcome any advice now.
When the first oral targeted agent, ibrutinib, was developed no one knew that some of our cancers would become resistant to the meds. It was originally thought that one would be on these agents for the rest of our lives, like a diabetes or a heart medication. Unfortunately resistance has developed; there are several known mechanisms for the BTKi's like ibrutinib and acalabrutinib. Venetoclax has developed resistance also. It doesn't occur in everyone, but there isn't any way to predict who will get it. The current thinking generally among many, is low dosing only on those patients who otherwise has severe side effects, to prevent resistance. Others whose patients are being managed beautifully on low dose think otherwise. As far as long term harmful effects, there's no way to know until decades of use have gone by. But potential unknown long term harmful effects would be an argument against low dose continuous therapy IMO, for any med not just the CLL ones. If one can keep their critter at bay for a year or more, without taking meds that we *know* can affect other cells, why take the med? The long term mutagenic/carcinogenic potential of these drugs is a big unknown. Let alone any long term effects on liver, kidney, heart, etc.
SofiaDeo, I appreciate your reply to my note, especially given your background and knowledge. I know it's better not to take meds if you don't have to, but I would have thought taking a low dose was potentially less harmful than a high dose, assuming of course that the low dose is effective. As far as I know Venetoclax has only ever been tested (trialled) at 400mg a day, the recommended dose, and presumably the highest dose thought to be generally tolerable (and even then after a gradual ramp-up). We'll only know what is the best protocol, and if there are any long-term adverse side effects, several years hence; right now it's a bit uncertain.
Coupled with all that is the concern about stopping a treatment that has kept you/me well. Fortunately I am being looked after a CLL team who are happy to discuss these questions.
I think you are correct on all counts. IMO CLL is so different in everyone, it truly is a thing that treatment needs to be highly individualized. IDK any of your markers, but my critter is a "tough, hard to treat, almost killed me once already" one, and I am unwilling to risk resistance. Others whose markers are different, and experience with CLL is different (my critter also gives me very unpleasant symptoms before it starts on neuts or RBCs or platelets) may, and can, choose otherwise! I agree with your concerns, and for many like you it is the right choice to be on low dose constant therapy to keep the disease in check. For me, with my *fear* of resistance, let alone the actuality of an aggressive hard to treat variant, it's not. I am happy that the docs seem to be moving in the direction of "let's start with X and adjust things if/as needed" instead of trying to impose the exact same protocol on everyone. And with us adding our experiences, it adds to this knowledge.
I was on fixed duration Obinutuzumab (6 cycles) and a year (13 months) on Venetoclax. I achieved uMRD at some point prior to testing at 11 months and remain uMRD at almost a year post-Venetoclax. Hoping for a long remission. I was also told that it may be ok to retreat with Venetoclax.
I'm a bit surprised to hear of people only being on venetoclax 11-13 months. For some reason I was under the impression that for most, it would need to be an average of 2 years on it, but dont ask me where I got that impression...hehe!
Or maybe (as mentioned above) people receiving a "combo" with Obinutuzimab needed to be on treatment a shorter time (?).
Anyway...thanks for your reply and hope your remission is long lasting.
I've been there, and am now resistant to Idelalisib and Venetoclax. I've recently started Calquence and hoping I don't develop a resistance to that also.
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In the 2010s, my very smart CLL expert doctor and I both believed that continuous treatment was best, so when Idelalisib failed, we immediately started treatment with Ibrutinib instead of waiting until I had progressed enough to require treatment.
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We did the same when a pause in Venetoclax treatment showed a rise from MRD-U to 1% CLL cells in 4 months, we restarted treatment, without waiting.
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Now both of us suspect that I would have been better off to delay until I had progressed enough to meet the 2018 iwCLL guidelines for treatment sciencedirect.com/science/a....
The extra time between those treatments might eventually add to my OS - Overall Survival.
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So, in the 2020s, we both have turned 180 degrees and now believe that most patients should take as many and as long periods of Watch & Wait as they can.
I recommend the KeePass password manager. Have been using it for years. There's a windows , linux and android version too. I got likely over 100 passwords stored in it.
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Imbruvica to Venetoclax
Fatigue on Venetoclax
Obinutuzumab and Venetoclax 
Obinutuzumab and Venetoclax 
