HI all, I’m 53 and after 5 years I’m nearing the end of W&W and my oncologist is suggesting I start treatment due to expanding nodes in my neck. He’s offered two types of treatment, (1) Ventickax & Obinutuzumb, which as I understand is basically chemo plus drugs for a year that will hopefully put the CLL into remission for some period of time or (2) taking a BTK inhibitor like zanubrutinib basically as long as that works. He said he’d lean toward (1) if I can take the needed time off work. Wondering if others have faced this decision or have any words of advice.
Thank you!!
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Murphy63
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If ur mutated then I suggest short round of FCR chemo. I only needed 3 rounds & had barely any side effects. They tested me after round 3. My WBC dropped from 225k to 60 first day, nodes disappeared second day. If ur unmutated, then ur plan of treatment to do O& V is good. I didn't want to do BTK pills rest of my life. 5 years remission so far!
Hi Murphy,Some patients have no side effects from either one of these treatment options. On the other side of the coin toss, some do. I will share my experience with you.
I am half way through OBIN/VEN treatment. A month past my final infusion and have been on full 400mg Ven since ramp up. There is an age difference between us, as I am 67.
The treatment has been clinically effective, but with many unpleasent side effects. None of them would motivate me to reduce or stop treatment. Nausea, body aches and pains, a sore left rib cage still, fatigue, constipation, weakness at times, itchy allergic reaction to Ven quite frequently.
Now all of those side effects get treated with my basket of medicines. So constipation is no longer an issue due to mirrolax and stool softener daily! Metamucil is not recommended by the pharmacist. It made constipation worse, way worse. Itchy allergic reaction is remedied by doses of Benedryl and Zertec generic version. For nausea I take odansetron and over the counter Nauzene as needed. Body aches and pains, tylenol and prescription pain reliever as needed. Fatigue...plenty of sleep and a nap if needed. Due to body aches and pains I sleep when I need it. Because inspite of pain meds whether prescription or over the counter. Sometimes pain and discomfort still causes inability to go to sleep when I prefer. Being retired, I just work around it.
Again, many fellow members on this forum have absolutely no side effects from this treatment regimen. I thought I would be one of them, but I lost the coin toss on side effects. Now what? I thought well I could quit and go to a BTK daily? Maybe I would have no side effects? Or then, maybe I would?
If I quit the current O & V? I would be discarding one of the few treatments available,
How my body would tolerate a BTK is an unknown. Since O and V has been very effective for me. ( labs looking good and no ER visits) I always come back to sucking it up and finishing the course I set.
CLL/SLL treatments are not like the wide array of ice cream flavors. We have a small selection of effective treatment flavors. So tossing one for treatable side effects is not a wise option in my view. As I will need 2nd and 3rd line treatments down the road. Maybe sooner rather than later, who knows for sure.
I chose O & V because I liked the possibility of treating for just 1 yr. All I have to do is get through the short term side effect gaunlet. Still sounds good to me! Although at times I wondered...
Now, down the road when its time to retreat. I will probobly go with a daily BTK if nothing better is available. As I would not want to go through O & V for a two year course protocol. Its only one year for the treatment naive. For me, it has been very disruptive to my quality of life. So next time around probobly low dose Ven or a BTK daily.
So glad we have the great options we now have. I know our choices come treatment time will only get better...
As John notes, adverse responses to these medications is highly variable among patients. I’ve been on the V + O regime for nine months and I’ve had virtually no side effects. You will find similar differences among folks receiving Zanubrutinib. The effectiveness of these medications is also highly variable from patient to patient. I wish things were cut and dry but unfortunately they are not.
It is indeed highly variable how patients respond. Calquence stopped working for me after 9 months. Now on a reduced dose of Venetoclax because of side effects. I had to stop both Rituximab and obinutuzimab because of side effects. I am definitely not the norm, my specialist told me I am his first patient who had to stop obinutuzimab.
I had some non Covid virus a few weeks ago and my neck really swelled up, but I feel great now and my neck is significantly diminished, but still swollen. Also trying to decide if it’s best to just put it off if I feel good and can live with some swelling. Timing to start is Tricky!
Hi Murphy, as I'm a similar age (51) and working full time, thought you might find it useful to hear of my experience on Acalabrutinib/Calquence. I was offered O&V but my oncologist strongly recommended Acalabrutinib because he knew it would be easier on me and allow me to continue working normally. I'm 8 months in and it's working really well. I experienced some side effects in the first few months but as I'd been feeling really run down and exhausted in the lead up to treatment I was relieved just to feel my body picking up a bit, even if it did feel confused. I really wasn't keen on the idea of being on treatment for the foreseeable but I'm now very happy that I went with this option. Currently I'm left with nothing more than a stiff lower back and some very mild swelling that comes and goes depending on work intensity. As Pacificview says, everyone reacts differently, so it's a hard call to make when you don't know what will happen! Good luck.
Venetoclax and Obinutuzumab (V+O) are not chemo. Many chemo drugs are derived from mustard gas, including the 'C' of FC-R. V+O are a small molecule targeted drug that targets BCL-2 receptors on CLL B-cell's mitochondria killing the cell and a monoclonal antibody that targets CD20 receptors on all B-Cells, flagging the cells for destruction. It is short/fixed duration therapy for 12 cycles, 48 weeks. Obinutuzumab will remove a lot of lymph cells very quickly, first 100mg will get WBC down to about the top end of 'normal'. Venetoclax kills B-cell very quickly as well.
CLL14 trial of V+O recently issued 6 year results (that's how new this is), for the first time ever results for actual genetic marker pairs ware shown. Median for IGHV mutated with/out TP52 del/mut at 72 months has not been reached. Median for IGHV un-mutated with TP53 wild-type is 66-70 months. The "difficult to treat" 10% with IGHV un-mutated with TP53 del/mut have a median of 47 months. Fixed duration 15 cycles Venetoclax + Ibrutinib CAPIVATE FD trial at 42 months shows very similar results and for the low risk" IGHV mutated with/out TP52 del/mut maybe better. It avoids 9 IV's that the O of V+O has but nearly doubles the number of tablets.
BTKi like Zanubrutinib are also small molecule targeted drugs that prevent the CLL B-cell dividing and they die of old age. As they live longer WBC gets worse before it gets better.
About half of the 30% CLL patients that are IGHV mutated with 17p/TP53 wild-type have a very long remission on 6 cycles of FC-R. No one can tell who is going to win that coin flip. If you aren't in that 30% it's not used as everyone loses and life changing side effects are common. How and if other genetic markers like your 13q affect durability is unknown. Fludarabine was developed in 1968. Cyclophosphamide was one of the first chemo drugs in 1958. Rituximab is a CD20 monoclonal antibody. It was one the first MAB's introduced in 1998. For the lucky half the addition of R to FC has been astoundingly successful, not so good for the other half that took it and lost the coin flip.
I think it's important to keep BTKi usable rather than exhausting it in 1st line, as it could become a kingpin of a triple or multi drug therapy that is more effective (yes I'm betting on it). It can/will also exclude people from R/R drug trials that include BTKi. It is common to use 24 cycles of V+R (or repeat V+O) as 2nd line after both continuous BTKi and short duration V+O (or V+I). After a short duration 1st line, continuous BTKi can be a 3rd line that is unavailable to those that took BTKi as 1st line. But that's three coin flips to be won in a row instead of two.
Disclaimer: Confirmation bias as I'm in week 2 of cycle 6 of V+O. Had a short low grade reaction to first infusion, rate halved so took 8 hours. Lymphs dropped to normal in 5 days and have stayed there. No side effects whatsoever. Even though CLL is being dealt an unlucky "bad hand", I've won this coin flip. Just have to hope I win the next coin flip for median of 70 months for IGHV unmutated, TP53 wild-type but no-one knows how my "bulky disease" changes the course length or the odds. I'm not a gambler but that's what CLL is turning me into, chasing the odds. I've backed my horse but it's just cleared the first fence in the first race in an accumulator.
Hi Murphy , and from 2021 to 2022. I was on Obinituzamab to start and then venetoclax for a year. These are immunotherapy drugs and not chemotherapy drugs. You will not lose your hair with this treatment. I am now in remission. The good thing about this combination of drugs is that you go off of it. If you do go out of remission, you can take the same drugs again , since they helped you go into remission the first time . I don’t think that is the case for other drugs for CLL.
I started a clinical trial called Alliance A041702 with Ibrutinib, Obinituzumab and Venetoclax 3 years ago. I have been uMRD since it’s conclusion almost 2 years ago. My trial was for over 70 year old patients but there is an identical one for under 70 year olds. Take a look at it and talk it over with your doctor.
Let me know what your doctor thinks and if you were able to qualify for the trial. One good thing about taking part in a trial like this is that they cover the cost of the drugs. You still need to pay for all the testing.
On the advice of 2 different specialists I went with Calquence. I can later use Vand O. I can also later use a different BTKi inhibitor .
Main reason being BTKi inhibitor is least intrusive tx, so while I’m younger, live as normal as possible. Can do more intrusive tax later .
More great tx are coming, maybe even a cure in 10 years. Some people go 8-10 years onnBTKi.
After 1.5 years on Calquence, I’m in remission, never had any significant side effects . Once it’s narrowed down down to a few tx, it’s “best guess”. I try not to second guess . I can always go to the other tx later so I chose the least intrusive for me at this time. God bless you and everyone
After becoming R/R to covalent BTKi there are non-covalent BTKi. Pirtobrutinib is first to market but may not have the duration one would hope for. Median is reached in 16.8 months.
First therapy is golden, response to 2nd line is not as good as the 1st selects the easy CLL for death and leaves the cells that are more difficult to re-start proliferation. BTKi as first line has excellent median duration, which are halved for 2nd line. But median of short duration therapy + shorter 2nd line median of BTKi tends to be longer than 1st line BTKi.
I’m 60 (UK) been on W&W for 2 1/2 years, was told on my last consultation that I’ll probably be starting treatment in November, Nodes in neck and blood results suggest that I’ll start sooner rather than later. Haven’t been given any options yet.
Just adding to team V+O - First off, it isn't really chemo; the Obinutuzumab is a monoclonal antibody and is only given 6 times or so. The V is a daily pill or set of pills and I had absolutely zero side effects with it and no need to take off work. I was also given a prophylactic antibiotic for a few months and allopurinol at the beginning only.
I think I took off two total days of work throughout the entire thing. Your mileage may vary.
The first go for treatment in 2018 I wanted to go with BTKi, Ibrutinib as it had just been approved for front line treatment. My doc didn't seem to want to do all the paper work for it, so I went with F.C.R. which cause a lot of severe consequences that lasted a full year. Plus I relapsed at 2 years.
I finally reached the time to treat again last year. I initially wanted to go with BTKi plus Obinituzimab plus Acalabrutinib. But as I wrote up articles for the CLL Society, the data showed that with 3 agents there were a lot more side effects without a lot of increased side-effects.
So I decided to go with 2 agents. My doc, who is world re-knowned indicated the V +O was more likely to achieve a long treatment free remission than V + BTKi I was leaning towards this.
But after not making antibodies to Covid vaccine due to a drug similar to Obinituzimab, and the increased risk of side effects of the combo treatment, and the great early data on Zanu, I changed my mind. Plus, I wanted a break at least for a year or 2 after 3 years of all the Covid precautions, and I knew V + O would put me at higher risk than a BTKi for not only Covid but a lot of other infections and side-effects.
But my oncologist didn't listen much, pushed for the V + O, and I had waited so long to get treatment because I was feeling so poorly from the CLL, I just went for the V + O.
I was working from home when I started. Although I did not have the severe reaction after the first infusion like so many did, I did black out on the day I came for the second passed how, fell and hit my head. I remained dizzy and light headed for about 4-6 weeks while getting the O infusions.
With the V ramp up, I started getting a lot of nausea and severe diarrhea and extreme fatigue. After about 3 months, these symptoms have gradually diminished significantly and although I am not 100%, I am doing some hikes, working out and need something for nausea or diarrhea only about once per week. I was always able to work from home during all but the first few weeks.
Now 5 months in I am reasonable happy that I did the V + O as I am hoping to be one of the 80% or higher group of patients that get 5 years of progression free survival. But the effects of the Obinituzimab interfering with antibody production for another 6-12 months is still a concern.
Bottom line, of the many docs that have CLL I've spoken with, most have chosen the BTKi for "life style reasons" and will look at V + O years from now.
I was given some advice that I did NOT initially follow, that would have taken away a lot of stress. This advice by another doc with CLL who picked V + O was that "regardless of the choice, remember that they are all a lot better than what we had just a few years ago, and to NOT RETHINK YOUR DECISION AFTER YOU START." You can read his thought process on the CLL Society web site. I believe he listed his name and the article was about he as a physician made his choice.
God bless and Good luck.
PS the one caveat that my doc told me was that if I had a TP53 mutation, she would lean towards a BTKi.
Thanks for sharing your journey so far. The potential side effects are concerning for me as I’m active and feel good physically and my blood work is not that bad. The swollen nodes in my neck seem to be the main driver for treatment. Do I want to go from feeling good to potentially feeling poorly but with longer term effects of remission. Tricky for sure.
At 39 months both VenO and VenI have exactly the same response on CLL14 and CAPTIVATE FD trials. Ignoring cost of administering IV's, VenI is 70% more expensive than VenO at UK list prices. I don't think we get what we are paying for.
IGHVunmut+del(17p)/TP53mut are "high risk" have short median on short/fixed duration 1st line. VenO is 47 months, VenI PFS 55% at 39 months, one more event and this will reach median. Number of people in with this genetic pair is small, 16 in CLL14 and about 17-19 on CAPTIVATE FD.
As ever IGHVmut are "low risk", median not reached for VenO at 72 months and PFS at 39 months VenO 86%, VenI 92%. TP53 status appears to have little affect but numbers for the IGHVmut/TP53mut group are very small, VenO 5, VenI 10-12.
That leaves the "medium risk" IGHVunmut/TP53wild, VenO reached median at 67 months, PFS at 39 months VenO 86%, VenI 82%.
A recent presentation from CLL14 team highlights that MRD status is critical to survival. 10 out of 23 that failed to reach 10^4 MRD have died within 72 months, it's getting close to median OS. Median time to progression for this group was about 24 months (eyeballed) from start of VenO - slides 23 and 24 on this link.
UK NHS don't do NGS MRD, an appraisal in 2021, "Two experts highlighted that the value of minimal residual disease assessment to inform clinical decision making is still unclear." Well it is clear now!
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