I sent this to skyshark based on some info he posted but I was hoping for the whole group to chime in.
I had 3 rounds of FCR in 2018 stopped because of profound neutropenia.
I relapsed exactly 2 years later and though I did not start Tx until the 5 year point in 2023, would have gladly started it 9 months ealier due to B symptoms.
I've been curious about improvement of uMRD status with longer duration of Ven after completing the V + O cycles. I am at 14 months with intolerable side effects that greatly impact my quality of life. At 13 months I was uMRD 4 in PB and had 4/10,000 CLL cells in Marrow.
My oncologist showed me some data from Murano III for R/R patients on V + R that showed not much better MRD status was achieved after the first 9-12 months compared to those at 2 years total on Ven. And said I could stop V now if I wanted and just see what happened.
However, in the same Murano study group, stopping treatment early led to shorter PFS where as dose reduction did not. I had a har
I had a hard time following the logic of either of these 2 studies.
Skyshark you have the citation for your comment
"CLL14 by end of cycle 6, 72% were uMRD-4, 61% uMRD-5. By cycle 12 that number had hardly changed but uMRD6 had increased from 34% to 50%. Dr Brian Koffman's (n=1) observation is that a factor of 10 reduction gives nearly an extra year before next treatment."
Just hate to stick it out another year on Ven if my MRD status is not going to improve much and I end on some sort of treatment for the same amount of time now v. later
DO ANY OF YOU HAVE ANY OTHER DATA OR intepreatation of these studies to guide my decisions about how long to put up with the Ven. Eg does 10 month longer only buy me 10 months less overall treatment over a life span?
Thx
Skipro
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skipro
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Skipro, I do want to point out that you do tend to do extremes of physical activity even during induction, andhave continued during treatment. I am sure this affects your side effect profile at least somewhat. It may alter the ability of the medication to work effectively, since you are selectively sending energy to skeletal muscle. You aren't letting other organ systems take what they want when you selectively use a lot of it in extreme skeletal muscle activity. I do wonder if you spent that energy allowing your body to make new cells if possible, your outcomes and side effect profile may have been slightly different.
FWIW, a few people here have either posted about, or PM'd me privately, doing what I consider "excessive" exercise during induction and sometimes during treatment. It seems to me you all have had side effects on the "more severe" side. Of course, some of us have severe side effects even if we don't feel great & aren't doing a lot. But I do think induction and perhaps early treatment, is somewhat akin to trying to recover from other major disease/surgery stressors. Those all recommend more rest as, opposed to increased extreme activity. Professional athletes don't immediately jump back in to their regular routine after an injury, they are slowly eased back in.
A treatment is not just "taking the drugs". It's also adequate nutrition, rest, etc.
My own N=1 notes that mild aerobic & weight bearing exercise, enough to get blood flowing but not enough to make me sore/exhausted the next day let alone later the same day, has contributed to very few severe side effects. When I was told I was neutropenic during induction, I stayed inside/took it easy that weekend. I rested, ate well, pushed fluids. Things were normal on Monday.
The one early treatment where I was anemic enough to warrant a blood transfusion, I was hiking around 7000+ foot mountains on weekends. I started taking it easier after that.
since 2011 my mental, physical, spiritual and emotional survival and coping has been these types of activities.
CLL, FCR and 1 year of neutropenia, 13 malignant skin cancers. relapse when Covid pandemic hit, a non supportive family that basically abandoned me rather than take Covid precautions, a son in law that spent 4 years dying in our home, and some other very hard personal things then a spouse who treated me with cruelty when i started V + O plus neuropathic conditions awaiting surgery that make it almost impossible to use my lap top for my new career and so on
I had no other coping mechanisms left than the hiking, snowshoeing, and skiing.
i finally had surgery on my left arm conditions and am looking forward to getting the right arm fixed so I can try to use my lap top for various things like photography and writing and some work
I understand. I haven't had the stressors you have, I've had more support. And another thing that helped me personally adjust, the 3 acres the house is on, next to a national forest, has ponds/ waterfalls. Being able to lie in bed while watching & listening to the water through a literal wall of windows, seeing the birds & other small animals running around, became my "new hobby". Walking around the paths, I was surrounded by nature right in the yard. So I had a readily available distraction, instead of having to hike or climb to it. You have to go somewhere to get distraction.
You've had one of the most difficult personal situations I am aware of. I can't imagine the courage and strength you have used, to be able to get through all this. I hope things settle down for you soon. You've certainly earned it.
This is the place to rant, no apologies needed. Upper respiratory problems while under treatment must be horrible. Please consider getting some room and HVAC air sanitizers and/or HEPA stuff for the house. They can't stop you from doing that, can they?
i could get out the HEPA filters again. In the past they’ve made my wife angry so I stopped using them.
My therapist yesterday helped me prep for a convo with her that my being ill from URI all the time is not an acceptable option and this is what I am doing goi g forward.
Early discontinuation of venetoclax (<2 years) was reported in 27.8% of patients (54 of 194). The two most common reasons for discontinuation was AE (29 of 54, 53.7%), followed by PD (12 of 54, 22.2%). Two of the remaining 13 patients died, and the other 11 discontinued due to withdrawal by patient (n=5), physician decision (n=3), other reasons (n=2) and non-compliance (n=1). In total, 22 of 28 (79%) deaths reported for the MURANO study were in patients who discontinued venetoclax prematurely. Of those, 13 of 22 (59.1%) deaths were in patients who discontinued venetoclax due to AE (two were related to venetoclax), while four of 22 (18.2%) deaths were in patients who discontinued due to PD (Table 2). Two of the remaining five of 22 (22.7%) deaths were in patients who discontinued due to death, and three were in patients who discontinued due to withdrawal by patient (n=1), physician decision (n=1; related to venetoclax) and other reasons (n=1; Table 2).
MURANO at a median follow-up period of 23.8 months 20% of "withdrawal by patient" had died. 3 deaths out of 11 is 27% for all discontinuation reasons other than death, AE or PD. I think you should continue to suffer!
What I haven't found is the rate and depth of MRD during the time on treatment. Rituximab isn't Obin and GAIA showed 12 cycle VenR to be very inferior to V+O in 1st line treatment naive.
Due to lack of trials of V+O for R/R you are n=1 until someone collates the data from you and others to write the clinical report.
You could choose another less extreme form of exercise. I totally understand as daily exercise is such an important part of my regime. I also understand the need to rant and great that you can do it on this platform. I find that getting involved in voluntary activities helps a lot- it takes the focus off yourself and no matter how bad you feel you have to front up to situations that are worse than your own. Mind you I have never been in the situation of having to deal with being in treatment so am probably a bit naive❣️
I’ve always had to push myself in life. But maybe in this situation too much can be a problem.
I’ve been learning to pause to enjoy the beautiful scenery of late and drink in the moment.
I’ve learned and am re-learning that gratitude for what I can do while pushing less hard or taking breaks to ponder gratitude can bring as much or more joy and hope as overdoing.
As an orthopedic surgeon I often found myself telling my life long patients that were aging to change their activities based on the affects of aging. “At this pace you won’t be able to do anything in a few years but if you modify activities you’ll be far more active for far more time”
A lot of self reflection is in order, including following my own advice. And of course all the wonderful advice from all you wonderful people in this group
skipro, I'm with you on the restorative power of outdoor exercise, and for me nothing equals walking in the mountains. I don't live close to the ranges I'd love to be in, and if you do, then make the most of it. It's an irrestible pull that not everyone gets.
Having went through the whole B+R with some manageable side effects and then 1 year of V&O, I am happy to be in remission and not concerned about if I make uMRD or not. We all want to be able to return to former levels of activity, but alas have to accept some limitations. I am very fortunate in that I have so many things that I enjoy doing that I can be at peace with myself. I keep moving to stay mobile and allow myself the pleasure of doing things I enjoy.
My wife did covid triage at her hospital door and every night was a struggle to contain possible viruses and to a degree that has not stopped because we have a lot more than covid to worry us with CLL. I am blessed and you will be too.
I do not want to stir up trouble. But, I must ask, if she blows up at steps you are taking for your own safety and she resents it, has she ever thought about seeking some therapeutic help in sorting out her feelings.
Maybe she hasn't explored them or, needs to be able hear herself say them out loud to an impartial party without having to fear being judged. I'm not implying you are judging her.
I had one student that had an internal struggle and the only way they had, at the time, was to become aggressive to me until they boiled over. They would end up expressing their fear/lack of confidence about an upcoming step they needed to make. After that, they would at least make an attempt with varying degrees of success.
I'm not saying that her case is anything like what I've described, but, we are irrational beings and many times we develop maladaptive coping mechanisms that seem horrible and yet we cling to them, because they are familiar.
The process doesn't always have to change to still benefit from the resulting change, i.e. it is what it is.
For decades kids and i have suggested and she gets resentful
now that she getting a masters degree for becoming a therapist she thinks she’s an expert even more so than in the past.
we had a couples therapist and she did who became her person friend and now mentor in her training. My wife tells us that this therapist told her she was the most emotionally and socially competent person she’d ever met.
So I’ve followed through on plan B which is sleep in separate bedrooms and put the HEPA filters out in common areas.
Sorry, you're doing the two step in a minefield, and managing it well. Keep strong, even if you need to cut back on the intensity of your regimen, keep doing it you are so centered I admire you.
Wearing a mask is like hanging a sign on oneself that says I am sick. It may be that she feels stigmatized in public when you wear mask. My wife wears a mask 10 hours a day in hospital and I would not consider asking her to wear mask around me as uncomfortable as masks are for her. Ideally people who have coughing sneezing illnesses would wear masks which would help us more. I did very well in not having illnesses during my first remission, but that has ticked up somewhat since doing V&O. Neither my wife nor I have had covid so must be doing something right. I have had several head colds which hang on longer than they should, but my wife takes good care of me. Surly a compromise can be reached for you. Blessings
So December I caught some coughed on wright long for three or four days and then had headaches bodyaches and increase fatigue for about six weeks.
Early on I was tested and found to have both adeno and enterovirus
I had a brief reprieve and then caught something else and didn’t get tested other than for Covid while perhaps 4 to 6 weeks.
All of the aches and pains and fatigue during this period.
I developed thick, nasty mucus and the onset of diarrhea. Diarrhea but thick, nasty mucus, headaches, and some dizziness and bodyaches progress and I finally took Augmentin. for three weeks. Two weeks and I started feeling great and felt great about 10 to 12 days and then got sick after
a week or so I saw ENT who took cures for my sinuses endoscopy, and it grew out multiple bacteria, including pseudomonas, Citrobacter, and a staff species so I had to go on Levaquin for two weeks. About 10 days into the Levaquin I started feeling a lot better again and that’s where I’m at now.
However, my mucus is starting to pick up again and it is clear. However, I don’t have the other symptoms right now.
Hopefully it stays that way
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V&O treatment is over
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