As you might know, I (11q, SLL) started V+O three years ago, completed successfully after a year, uMRD in the blood.
Bliss for 18 months, then CLL was detected in the blood again via flow. (sigh sadly)
I was quite bulky pre-treatment, & now I'm starting to see some nodes return (neck area).
Blood labs were normal around 6 weeks ago.
My doctor's not a specialist, but I had a consultation with a specialist in October who said, if I could go 3 years after stopping V + O, he'd repeat it, but if I needed treatment sooner, he'd recommend Acalabrutunib, which supposedly works quite well on 11qs.
Anyhow, I also have major health anxiety, & these nodes are a persistent reminder that the CLL/SLL is coming back, & I'm really having a hard time living with that. (Plus I feel like everyone's looking at my neck lol.)
Tell me if I'm misguided here: I really wanna just start Acalabrutunib. Like, soon.
Why should I accept gloomily waiting for the disease to progress to more debilitating symptoms? Last time pre-treatment I was in the hospital for 6 weeks dealing with various infections. Am I really supposed to wait for something like that to happen again?
My thinking is, I could ride Acalabrutunib as long as possible, then, if it starts to fail, I could move onto V + O for a second time at that time (or whatever 2nd-generation V has come along).
How am I wrong here? What am I not understanding?
(In short, wouldn't nipping it in the bud be smarter than waiting for the whole dark flower to bloom once more?)
Thanks,
--Dave!
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So, the one pause that I might have if I were you - you're 54 in your profile. So, you need quite a few decades of treatment to live the life you're meant to, not just 5-10 years. So, I don't know that I'd want to immediately use a 2nd possible treatment until you're closer to the "need to" stage - maybe not as close as you were before, but closer than you are now.
Instead, if I had anxiety, I might ask for more routine appointments, so you can keep track of your illness much closer and act before it gets as bad as the 1st time.
I mean, I started with 6 week appointments, then 3 month ones, and I've finally graduated to 4 months (still never seeing the 6 month norm) - maybe you could get your docs to agree to the more aggressive monitoring, and get more frequent appointments than you have now, so you don't "miss" when you might be getting close to the cliff...
But, you do know you best. Whatever you decide, know it's the right call and don't look back!
I see my doc every 3 months now as is (down from every 6 weeks, as it's been for the last 3 years ;-).
Maybe that contributes to why I'm so paranoid currently: I'm mid- my longest gap without monitoring!
The way I see it is, ideally, I'd get, I dunno, 5 years outta Acalabrutunib? That'd see my son mid-way through college.
Then maybe another 3-5 years on V + O part 2? That'd see him graduate, etc.
Then ideally a few years on Pirtobrutunib or whatever, hopefully by which time there'd be new, un-dreamt-of treatments available (LAVA051--I'm looking at you!) that might even, gulp, "cure" the damn thing?
Is that a gloomy line of thinking, or hopeful? I can't tell.
Hi Jackie. How long were you on a bispecific antibody? I am unmutated 11q deleted. I am currently on a MS-553 study and have discussed possible CAR-T. The bispecifics seem preferable at least theoretically. I’m trying to plan my next move if I get through my present set back. Thanks for any input. Tony
Hi Tony, a bispecific is like a mini, off the shelf CAR-T but without the long term on going benefit of engineered T cells. I only received it for one week, at the lowest dose and, even though I had very bulky disease I had no response at all. I actually deteriorated and my nodes grew rapidly. After one week my liver enzymes were 500+ so there was no chance of increasing the dose and I came off the trial.
I think it's reasonable to try a bispecific before a CAR-T if you can find a trial as there have been some spectacular results, although it too soon to know how long lasting those remissions will be.
I think hopeful Dave. You're trying to arm yourself with what's next for treatments if one or the next fails and that's understandable. I think the same way because we want to be here for as long as we can. "LAVA052-- I'm looking at you! That might even, gulp, 'cure" the damn thing?" I really like that "Cure" will always be my favorite word in the English vocabulary.
You've had some good replies, from which I hope you now appreciate that the number of infections and risk of having them doesn't influence when to start treatment. In my case, if that were the case, I would have missed out on 11 years of watch and wait. If you are experiencing an unacceptable number of infections then your specialist should be looking into why that is occurring and what can be done to reduce your risk of infections. I've been referred to an infectious disease specialist and a dermatologist specialist by my CLL specialist. Their advice saved me from further skin infections. You might need IgG infusions, or if you have serious enough chronic neutropenia, G-CSF injections to boost your neutrophil count to reduce your infection risk.
You note that your CLL was "Zap-70/CD38 positive, with ATM deletion" prior to treatment.Unfortunately that is likely a more difficult CLL to keep under control or achieve long remissions with current treatments, though you need to get that report redone to see what's the case now. I would try to eke out a long watch and wait unless your CLL clone has improved with those markers. Don't forget too, that treatments come with their own risks including a higher risk of infection, which with V&O, can extend for a year or more after treatment. Sorry to share with you what you don't want to hear Dave, but I hope you can ride out this remission for a while yet and without a repeat of infections.
So, there's no real wisdom in nipping it in the bud? I was under the (wrong?) impression that some researchers now consider treating earlier rather than later, especially second line?
... Read your reply again: the better then markers, the earlier to consider retreatment? I don't in any way doubt you, but that seems so counter-intuitive to me ...
PPS: It's the nodes I'm most concerned about. I'm just supposed to accept big funny-looking nodes indefinitely? ... Then again, there are worse fates, by far ...
Ironically, yes, the more stable the CLL, it's probably safer to treat it with fixed term treatments. Less stable CLL is probably better managed by maintenance treatments; hopefully suppressing it, such as acalabrutinib. Experts are still trying to work this out.
Think of it this way; whenever you treat CLL, you challenge it to find a way around the treatment; you select for sub-clones that have a selective advantage. Think of CLL as weeds in a patch of ground. Leave them and they will grow, with the faster growing weeds overshadowing slower growing weeds so that they never flourish. Wipe out the fast growing weeds with a weed spray and the spray resistant weeds grow - and they are harder to kill with weedicides.
For what it's worth, I would definitely be wanting to 'nip it in the bud' and be getting on with treatment if your nodes are swelling as you say. The lymph nodes are the proliferation centres for CLL/SLL and where it grows so I would want to stop it now. The clinical threshold for treating relapsed CLL does not seem the same as for first line treatment and I think Acalabrutinib is a good choice.
My husband has CLL since 2013. In 2016 he started a clinical trial with ibrutinib at OSU for early high risk CLL that otherwise would have been w/w. He did very well in the trial and when the trial ended 2 years later his ALC has entered normal range but was still going down. At that time Dr Byrd advised that he stop the ibrutinib b/c the trial ended. Six months later his ALC started going very slowly up. Dr Byrd said that it was too early for treatment ( ALC went up to 20k ) but when he goes back on treatmentit should be Acalabrutinib. However an opportunity arose wth Astra zeneca Compassionate Program in Canada for him to get on Acala right away and he took it. To this day he is doing very well , no infections and CLL very well controlled
I am going to toss this ball back to you lolol. I have an aggressive, considered hard to treat, poor prognosis variant. I was diagnosed at age 53, in 2011. My CLL makes me feel awful when it's active.
I know I run the risk of it becoming resistant to treatments, but I don't care, I prefer to treat. I do not wait until my labs (neuts, RBC, platelets) indicate it's time. I go by how I feel. Quality of Life is even more important to me, than being risk adverse overall. I generally am super risk adverse, but on this I am not. I trust that God will allow me to continue on, that new treatments will be found, or that I can repeat older ones. I was supposed to die, He let me live, I am continuing to trust in that. Faith is a great comfort, whatever one chooses.
I am not sure about the "3 years in between repeat V&O" statement. I haven't had an in depth discussion yet, but I have broached the idea of "repeat same treatment after 2 years" to my specialist. He didn't immediately respond "oh it's recommended to wait 3 years". However, I am on Venclexta monotherapy right now. The risk of late onset neutropenia setting in, is lower with the single agent, which is a trade off for increased risk of resistance IMO. Plus, the antiCD20's like O really affect antibody production out further than other agents. Plain V or A don't. Docs are hesitant to do really immune suppressing treatments on us, unless they must.
I have to say, I agree with Jackie. Nipping growth in the bud. CLL infiltration to other areas is rare, but it's possible. Our cancer is no longer killing off the folk it did before the advent of the targeted treatments, so who knows for sure now *what* the CLL infiltration/"metastasize" rate is since the advent of these agents. Especially if you feel awful, I would treat. I always like to give myself leeway anyway, "in case" neuts, RBC's etc. took a dip from the drugs. I would rather prevent needing the support agents, then depend on them working.
The “three years” thing came from Dr. Davids of Dana Farber. It wasn’t a hard rule, just a ballpark figure supporting the notion of, the longer between V stopping & V restarting, the better. Previously, I’d heard 2 years as a ballpark figure, so they’re all just throwing balls around, the targets being various lol. … Wondering, though: your doctor allows you to dictate such things? I’d always assumed we’re at the mercy of their wisdom & that my “wishes” could easily be overruled by them.
I wouldn't say it's so much that I "dictate", as I do research and present an evidence-based rationale/set of ideas to support what I want to do. Like, he wanted V&O but I countered with a list of reasons why O was not a good add-on for me, personally, at that time. I thought about it, considered, and came back with an answer. I might consider it in future, but not then, and I stated my understanding of the risks I was taking. As a former oncology pharmacist, and having extra training in clinical study design/analysis, I am closer to a "peer" discussing options than the average patient. I truly can discuss what the studies and new data mean, and how it might validly be interpreted, with regards to myself.
From my experience in medicine, it seems that if one wants to modify "approved" protocols, there needs to be a medically based reason for a doctor to be comfortable doing any modifying. And at least in the US, unless the insurance company or a clinical trial is insisting on "exacts", people are free to modify. Off label use in the US has always been acceptable. But there does need to be a medically based rationale for doing it, even if that rationale is mostly psychological effect. And many docs will take monetary costs into consideration; a treatment that is either prohibitively expensive or results in major work loss (whether that effect is monetary or psychological) can also be used as a basis to modify certain treatment recommendations. So something that's not "totally out of the box" can often be done, if other options have been weighed/discussed/considered.
My local guy, he’s great & all, but he’s no expert, & I live in the middle of nowhere. So …
Will you be my doctor?
Kidding aside, I might message you on occasion for advice, if you don’t mind. I feel so stranded here. Everyone on this most-excellent website writes about their “specialist” this & their “expert” that, & I just think, must be nice …
Why 2nd-opinion telemedicine advice isn’t a normal, accepted thing I’ll never understand, but no, they always gotta “see you in person.” And the CLL Society’s Expert Access is a one-shot deal.
I don't mind at all, please feel free. I may not respond ASAP, I am becoming "more active" IRL as I am getting into remission and tending to stuff that's been neglected the past few years. Or if I don't have electricity/Internel lol. Like, we came back from my first vacay in literally years and years, and there was a big storm and I now must deal with damage. Luckily we got back the garbage can that blew downhill to a neighbors so I don't have a $60 replacement fee. Next is repairing a shed door torn completely off. Since there is another storm on the way, I will just be trying to strap it into place today until a repair can be done!
FWIW, I think if a local hem-onc has the time/ability to research current trends/treatment in CLL, they can be great. It's just, with our cancer being rare and doctors often overworked, their continuing medical education is more likely to be in areas where they have a larger concentration of patients. I know my first local hem-onc "fired" me when he was certain I was deep in remission. He plainly told me, he needed to spend his time on patients who were actually ill, and to come back only if my disease presented again. I agreed with this and wasn't upset/offended, I knew I was in a physician shortage area.
If you haven't been familiarizing yourself with the terminology and concepts at CLLSociety.org, IMO it's a great place to start. I prefer reading to watching videos. If you prefer videos, I understand the Patient Power series gives a good basic education. I am sure there are other excellant sources as well. Because if you want to try to convince a doc to modify something, you really need to understand it, and explain "why" it makes sense to modify, for you personally. And if your concerns are more of the "fear of the unknown", sometimes the education can put things into perspective, and help decide if it's really in your best physical interest to treat, or wait.
Sorry Dave! I did read Neil's reply but, to me, it makes no sense to allow the CLL to proliferated and perhaps develop new mutations/clones in the process. My own consultant was planning my next treatment as soon as it was apparent that my remission had ended.
Basically I felt great, no symptoms blood was pretty normal. But my nodes were insane. Doctor said if we didn’t start treatment soon I would have problems swallowing. So we went ahead with the treatment. Before treatment the only thing that helped with the node pain and swelling was lymphatic massage by a person with lots of experience and warm compresses.
I feel your pain. I stared with BR chemo in 2018 at 56 years old and got four years out of it. I started O + V just this week. Just the O so far. I asked my doctor about going back to O + V in the future and he said the same thing your doctor did that it would depend on the length of time it holds the disease. It sounds like you are on the bubble as to whether to go back to O + V or switch to Acalabrutinib for your next treatment? Anyway, I think the reason to hold off is to keep as many treatment options in reserve for as long as possible. It’s tough to be showing signs of disease progression and worrying about infection risk but that must be balanced against getting as long as possible out of each treatment. Try and put your worries aside and let your doctors guide you as to when and what should be your next treatment option.
And yet, I see from your profile that you began to relapse in September 2022?
If so, that's the same as me.
But yet you're starting V + O just 3-4 months after? That's what I'm wondering about for myself.
Aren't our relapse periods the same: September - now?
If so, what brought on treatment this time for you? More than just nodes? (PS: nevermind those last couple questions: I just read through some of your recent posts. You had no choice but to choose a treatment. May it go smoothly for you, sir!)
My hemoglobin is under 10. 9.5 as of yesterday. My neuts are well below range as are my platelets. My bone marrow is also fully impacted. The bottom line is my bone marrow isn’t making the blood my body needs to survive. I’m assuming your counts are much better. That I believe is the difference. Relapse isn’t measured in time but rather it is measured by what is happening with our blood. Hang in there.
Mark, how are your infusions going? My Hb was even lower as you might know and by day 15 O infusion it was steadily going up (was knocked down by V afterwards but - the drugs can clear your bone marrow so quickly!)...platelets dipped to 66 after the first infusion but since then they have been going up. Neutrophils can be boosted by GCSF, I know you will do great! Sending lots of positive vibes and a friendly CLL hug 🫂 🙂
I hear you, Jammin'--we're jammin' to the same tune, it seems.
My doctor didn't give me a reason to hold off--but then again, I didn't ask him about starting; he just said "lookin' good, see you in 3 months," essentially.
As for "paranoia": I guess I'm paranoid everyone's looking at me: "nice neck!," etc.
Then again, I was bulkier pre-treatment 3 years ago, & when the nodes shrank, & I expressed my elation to my wife & son, they were both like, "huh? I never noticed anything" 🙃
So, if you didn't ask about restarting treatment, do you have a way to contact him by email? And then point blank ask him what he thinks?
I'm sure he'd probably give you his thoughts on treatment timelines...and his thoughts might make you mentally feel more at ease...or may make you consider getting the 2nd opinion.
I bring up all sorts of random things at my appointments. We always have a "what's changed from the last appointment" part where I mention things, even if I think they are un-CLL related. Most of them have been - a few haven't and have led to extra checks for my monthly appointments (like I always now get a spleen and full-on breathing check by the doc himself, without fail)...
I'd even go over the worries you posted here - that you don't want to get into the really bad state you were in before your 1st treatment, and even more, that you don't want to have large quality of life impacts before restarting treatment, and that the new extended time between appointments isn't working for you mentally.
A doc can't respond to that which he does not know. So, give him the full unvarnished picture - there's really no downside.
Dave in my opinion you shouldn't have to wait, especially if the nodes are bothering you. Follow your gut instinct. Maybe talk to a cll expert for a second, third opinion?
How ironic Dave🙂. Now I laugh, heck it's better then crying. I took my first acalabrutinib like a tylenol. Feeling better and doing good so far. I often think about it failing but this is likely to happen. Dr. Lamanna told me that because of my age I might need another or more treatments. Hey as long as I'm breathing, I'll take that🙃.
Third opinions for me are hard to come by, though, as I live in the middle of nowhere. I'm saving up my CLL Expert Access until it seems I really, really need it.
I so understand where you are coming from. My life was so miserable at least 6-9 months before I started treatment and by the time I started, I was so sick and so symptomatic and so low...it brought lots of complications and scary moments...I would not want to wait that long next time. If I had started 6 months earlier, I might not have struggled and suffered as much as I did...but then who knows...I'm sure you will make the best decision for yourself ❤️❤️❤️
CLL is not like the usual cancer where it is better treated quickly. That's why we have the dreaded w&w. It's better to only treat when the symptoms are a problem, each course of treatment can change how CLL presents. Traditional treatments caused a 17p deletion and increased its proportion. The novel agents are more effective with a 17p deletion and I don't think the academic world has got a true understanding how this has changed for the treatment of 17p.11q deletion is now being seen as not as significant as it was.
I have both 17p and 11q deletions.
I would not be looking to 'nip it in the bud', it's my understanding that time between treatments is 'free time', each treatment is knocking of a treatment that is available to extend your life. W&W is kicking the can down the Street but in a positive way.
There is some thought about starting treatment early, but my understanding is this is for first treatment, not subsequent treatment.
Im not sure that my waffle has added anything to wharves already been said, beyond another opinion.
I had the large nodes. After two - 3 weeks on Accalabrutinib they shrunk. I was in W and W for 4 years. My specialist said to wait until the nodes were 9 cm. I believe that is the published Tx recommendation.
W and W is emotionally difficult but as pointed out the current Tx only last so long before moving to another one. I chose to live with the lumps as long as they were less than 9 cm as measured by externally. That gives me longer years of living with current Tx and gives time for new ones to emerge as they are coming!
Yes it’s hard to W and W so I try to focus on healthy diet, exercise, stress reduction and being more kind to those around me each day( I figured kindness makes me more attractive 😀). I wish you all the best and send my prayers for your wellbeing and all of us in this community
Another 54 year here, who has a 17p deletion has already blow through O, I, A, and V and is on a clinical trial (LP-168). I was in treatment 6 months after diagnosis and completely miserable with an itchy rash all over my legs and a constant cold so I understand that concern. While I am doing fine right now, I am running out of easy options. My markers are worse than yours so my disease is harder to control, but I'm definitely of the mindset to wait as long as possible for the next treatment. I think I have another year maybe on this molecule and then back on V probably. Dr. Bryd has managed my expectations not to expect that to be a 5 year plan because in my case it can cause RT. No easy answers and you need to do what is best for you and your family, but I'm in the wait as long as possible camp because I'm hoping that gets me to another trial that involves popping a pill and not an extended hospital stay.
Great perspective and advice Ellen. I know you have been through many challenging twists and turns. I hope your current treatment holds longer than you expect.
They go down the evidence for treatment strategies based on recent trials, and outline what's just not known with certainty yet.
It's 2 hours long if you don't pause. I can't imagine watching it without pausing, if only to catch my breath or look at the slides to transcribe the author and publication name to find the actual paper. In some cases, the slides are abstracts from previous year ASH, in which case a paper may not exist, but more details from the abstract might be useful.
I get the impression that BTK after BCL2 is a valid strategy. In particular, they advocate genetic testing after covalent relapse from BTKi's to see if resistance is due to the C481S mutation in the BTK protein, in which case it would not make sense to re-treat with a newer covalent, but to move to a non-covalent, like pirtobrutinib.
I took notes, but was flummoxed at the rate of information and comments, so I can't say I recall the Venetoclax retreatment recommendation, except that it is indeed a thing. Much would appear to depend on why one stops Venetoclax - was it due to adverse events, or just a limited duration therapy in the first place?
There were also some interesting PFS and OS graphs for a given therapy vs that therapy plus anti-CD20 that seemed to me to make anti-CD20 less attractive given neutropenia risk. Again, the details are important before drawing conclusions.
I do believe your doctor should be able to describe the rationale for the therapy choice, and cite whatever studies to justify it.
I understand your desire to "nip it in the bud". If you are with a true CLL specialist - they will hear your request but they will not rush back into treatment just for anxiety. As someone else noted, you are young and this is a long road. You don't want to use up all the "powder in the keg" (as Dr. Brian Koffman of the CLL Society told me when I was disappointed on landing the monotherapy arm of a clinical trial instead of dual treatment - wise advice) because there are battles ahead. My two cents - I wish you all the best.
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Enlarged under arm lymph nodes during treatment
SLL and Acalabrutinib 
CLL / SLL 
Re: Mild Pain and Inflammation
