51 years old have been on watch and wait three years. Only reasons to start treatment now seem to be hemoglobin around 10 and after bone marrow recently done I believe about 70% CLL found. Unmutated. Good health outside of cll.
My two questions are first what are the chances of serious side effects from the V&O like organ damage or worse for someone my age and in good health outside of the cll ?
Second question is although Dr. has given both options she seems to be leaning towards V&O. What would her reasoning for that be when it seems just taking two pills would be much easier than the V&O treatments.
I go to Duke and will be returning in 6 weeks where more than likely my decision will need to be made.
Thank You for any help comments or suggestions.
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Bryanb
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There have been many past postings and discussions on this subject. And there are multiple videos by CLL experts that can explain the difference.
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A quick analogy is that V&O is like a quick hard sprint, with long rest at the end, conversely Calquence / acalabrutinib OR Brukinsa / zanubrutinib is like a long steady jog that continues for years.
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The "Fast & Furious" V&O treatment has about 2-3 months of intense attention, multiple trips to the hospital for infusions (4-8 hours duration) and lots of blood testing (to prevent the organ damage you mention). But then most CLL patients will be near to remission, and have 8 months of taking 4 tablets once per day. At the end of 12 months ( first treatment) or 24 months for previously treated patients, the treatments are stopped / paused for several years.
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The "Slow & Steady" Calquence is one tablet twice per day or Brukinsa is 4 capsules taken either once per day or split into 2 equal doses. Initially any enlarged lymph nodes and spleen may shrink quickly causing the ALC / Lymph# to rise quickly but in most cases that does not cause problems or alarm the expert doctors. There are far fewer doctor visits and only routine blood testing- often 3 months apart. But these drugs are taken continuously for multiple years, until these are not effective or side effects are too uncomfortable.
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For most patients there are few or minor side effects from either treatment plan, but up to 20 % of patients have some side effect that needs added medical attention or adds discomfort. It is difficult to predict whether you will fall into the 20% for either treatment, the exceptions are if you have kidney issues or heart issues. Otherwise the choice will be primarily your preference.
I will just piggyback on what Lankisterguy/Len said. If you even have a family history of cardiac or kidney issues. The BTKI have a reputation of some Cardiac Issues & likewise V can affect your kidneys & O can have you immunosuppressed for 1-2yrs after therapy while you’re enjoying your remission.
I have some changes on my Echocardiogram due to an untreated pneumonia with Zanubrutinib because infection is the 2nd biggest side effect of it. I was told by an Onc Resident that since my W&W was long (13yrs 8months) that I probably only need a low dose & low dose Zanubrutinib is keeping me stable with side effects to a minimum.
#GODSPEND just remember that all treatments are just a tool & ultimately GOD is in charge🙏🏾
Hi, Bryan, I am in good health and started the Rituxan in January 2022 for six months and then Venetoclax treatment in August 2022. The R infusions were once a month and only issue was fatigue the next day. No problems with V except occasional gastro issues. My doctor advised this plan saying I could go into remission. Just wanted to give you some idea of how it works for me. Best of luck to you!
You should consider a trial. You are young and could benefit from combinations like BTKi and BCL2. If the trial doesn’t work then you could just find a conventional treatment. The thing is some trials require you to not have been exposed to certain treatments so if you did treatment with your local doctor then wanted to try a trial you may be disqualified from some. Since I did Rituxan to treat autoimmune issues I couldn’t do many trials I was interested in.
What about the MAJIC trial of A+V vs V+O? The opportunity of A+V would allow you to just take pills. There is a research location in Charlotte, NC. clinicaltrials.gov/study/NC...
You can keep your doctor you like at Duke. Just would need to meet the study doctor if you took this route.
There are many other options if willing to travel. If there is a trial you find that would be a really good fit, you have the time and can afford it I think it is a good investment in yourself.
Also, if you do a reputable trial like MAJIC it helps everyone with CLL to know if one drug combination is better than another.
What are your genetic markers? That actually does have an effect on which would be your better course, as does what your family history is susceptible to, what length of treatment you want, and what type of lifestyle you want during treatment.
IGVH unmutated + TP53/17p wildtype median 70 months (failing fast after median, PFS <25% @ 84 months). (103 ptns)
IGVH unmutated + TP53mut/del17p median 47 months. (16 ptns)
V+O may not be best choice for IGHV unmutated and TP53del/mut (+17p?). 31.3% PFS at 5 years (not 6, that's 15%), median 47 months. The IGHV unmutated and no TP53del/mut group has a median of 70 months and 47.2% PFS is correct for 6 years but falls rapidly after the median. As this is short duration no resistance will develop and more treatments are still available as 2nd line.
Slide 15 shown. First time I've seen a KM plot for real world genetic marker pairs. Though 16 out of 195, 8.2% may not be very significant they are a larger proportion of the usual subsets, 13% of IGVH unmutated, 76% of TP53del/mut. CLL14 has an "unfit" population, unfit for FC-R, it may have skewed the results down.
V+O is currently the only CLL trial presenting KM plots for actual genetic marker combinations. The other trials hide possible poor response of some subgroups by lumping them together with another subgroup that does better.
Compared to A or A+O not so good for IGHV unmutated at all. The trials data from ELEVATE-TN hides differences between TP53 mut/wildtype status for IGHV unmutated by not plotting for real genetic marker pairs.
For A monotherapy the difference between the various markers and overall is less than 3%. Overall at 48 months 78%, mTP53/del17p 76% PFS, wildtype TP53/17p 78%, IGVH mut 77%, IGVH unmut 81%. IGVH mut are 33% of the population so for A mono IGVH doesn't matter. The mTP53/del17p are just 12.8% of the population, all of the 2% deviation could be due to 4 or 5 that are IGHV unmutated and TP53del/mut, then they would have a worse outcome than the KM plots appear to show.
When R/R on long duration 1st line BTKi you are done with BTKi. It can't be used in 2nd line combinations. A BTKi 1st line monotherapy needs to give longer PFS time than a short duration treatment + 3rd/4th/etc line BTKi mono. I currently think BTKi mono should be left to later and a short duration therapy used first.
The divergence for short duration A+O is much wider. Overall it's much better at 87%, IGVH again isn't affected much but the mTP53/del17p drop to 75% which is worse than A mono, a small number of this group of 25 could be responsible for all of that deviation.
Without access to the raw data the only way to find out is to extract the times of every fall in the line and tick mark for censored data in the KM plots. About 177 in each cohort, 3 plots, 2 regimes, just 1056 data points to inspect and match up. My OCD may be up to quantifying the task but may not be up to doing it.
V+I shows similar trends with a large drop in %PFS for mutTP53/del17p but smaller change for IGVH status.
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