The CLL specialist that we are seeing is giving my husband the choice between O&V and Zanubrutinib.
We are trying to make the best decision, but struggling.
They also said he can do one and switch to the other or vice a versa, but my husband works full-time and we’re a bit concerned about What seems to be the potential for some extreme side effects from O & V - which in my Layman’s terms, and very limited understanding, is somewhat like putting napalm on the CLL versus a more drawn out process with the Zanubrutinib.
Both of the specialist and his NP said they would opt for the O&V, mostly because my husband is 58 years young. But basically leaving decision up to us.
We are praying for wisdom and appreciate any input on anecdotal experiences.
He is scheduled for bone marrow biopsy and CT scan Friday for baseline and genetic markers, mutations etc. apparently, just because he was q13 before, it can change? 🤷♀️
Still feeling very overwhelmed. 😢
Christ is our healer! 🙌
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Cb1391
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I began treatment with o and v 2 months ago I have had almost no side effects except for some fatigue the day after my first infusion I would certainly recommend this treatment based on my experience to anyone hope this helps.
Yes, I found O & V very easy. I did have a couple of side effects but these were dealt with fairly easily. Certainly nothing like putting ‘Napalm’ on the CLL. That might be an appropriate comment if we were talking about FCR😀.
I am also on O&V. Started end of October. I haven’t found it very easy in that in the first 2.5 weeks I spent almost 90 % of my time going back and forth to the hospital. My HB remains very low so I have had platelet transfusion and on my second lot of blood transfusions. My consultant is considering doing a second marrow biopsy.
The obinutuzumab infusion is straight forward though I do not sleep very much the next day and suffer 24 hours of hiccups. Just started the venetoclax which thankfully I have had no side affects. One benefit of the treatment is that a lot of the joint pain that I suffered and put down to arthritis has gone. I would still go for O+V but I have had a bumpy start.
I understand why you feel overwhelmed and I sympathise. I probably do more worrying about my husbands CLL than he does. I would ask which order of treatment provides more options. For example if he has O and V then it stops working and he moves to Zanubrutinib can he go back to O and V? Also check what is possible if he does Zanubrutinb first. This will help your decision process. I wish you and your husband best wishes at a difficult time
Hello CB, yes it is all overwhelming. I chose Zanubrutinib & have had some bad side effects but I blame the doctors & not the drug. This BTKI drug has a great track record & is very flexible. You can take all 4 pills at one time or 2 in the AM & 2 in the PM. You have the greatest ability to reduce the dose if necessary. What I like best about Zanubrutinib is how effective it is, Large Neck Lymph Nodes disappeared in days that were there for years. I think a simple by mouth medication is more compatible with working. #GODSPEED🙏🏾
I was not treated properly with the Pleurisy on 5/7/23. My previous CT Scan said Lungs Clear on Sept 2022 before treatment. On 5/7/23 it read ‘Bibasilar Subsegmental Dependent Aetelectasis’ which the ER, Oncologist & Pulmonologist all ignored & read as normal while I am in extreme pain. By 5/9/23 I can not breathe & return to the ER by Ambulance & now it reads ‘Left Pleural Effusion, Pneumonia & Aetelectasis’. My lungs collapsed & still I am not treated with Antibiotics.
I see a new Pulmonologist on 5/22/23 & he says, you had pneumonia, did you get antibiotics? I said I used what I had at home as per Dr Goggle until I could see you. Can you order antibiotics because they were old & I have no more. He said that he was uncomfortable ordering antibiotics but would order steroids now & antibiotics in the future if needed.
He ordered a repeat CT Scan & Pulmonary Function Test. The 6/22/23 CT Scan showed ‘Scarred Pulmonary Parenchymal’ & 7/6/23 PFT showed ‘Moderate Chest Restriction’. I was back to the ER for the 3rd time with Chestpain 7/20/23. This Pulmonologist never treated me with antibiotics, never notified me of the 2 abnormal test results & then added insult to injured with his nasty attitude.
The Zanubrutinib Medication Insert says to treat any infection Promptly, Properly & even Prophylactically. So ignoring it the first time did damage & not properly treating it the 2nd time allowed it to continue damaging me. It was a nightmare, I almost died due to negligence & now I am so traumatized!
Yes Only GOD saved me & it is not over yet. Some doctors will push you where they want you to go. And even some will just leave you suffering unnecessarily, so please stay vigilant 🙏🏾
V+O is quite intense for first 9 weeks of a 48 week treatment. Then it gets easier with one IV each 4 week cycle and last 28 weeks are just tablets. Offers a long treatment free remission. I believe in US it can be repeated if remission is considered long enough.
Zanubrutinib (or other BTKi) is taken until it stops working, that may be a long time or not much longer than the remission that V+O gives. Then all covalent BTKi drugs stop working and duration of non covalent BTKi drugs after relapse from BTKi is short.
Both can be followed by VenR, R is another monoclonal antibody like O.
V+O, VenR can then be followed a BTKi drug and then a non covalent BTKi. Taken after relapse the time on this drug to next relapse is expected to be shorter than it would be if taken as 1st line.
I think an alterative to V+O is Ibrutinib + Venetoclax for 15 cycles (60 weeks), it's approved, does your insurance cover it? This is tablet only, no IV's or IRR, just the Venetoclax ramp up and it will make that easier. Ibrutinib is a BTKi and 15 cycles is unlikely to result in resistance. It can be followed, years later hopefully, by VenR or BTKi drugs.
Unfortunately this is too soon for new combinations to have been approved. "BV" Zanubrutinib + Venetoclax is on trial as a short duration 2nd line therapy. This will give yet another stepping stone (don't like a Dutch doctor's "icebergs", they are cold and don't play nice) for those that take a short duration first line but those that took BTKi to exhaustion on first line won't be able to have this.
My view is that a short duration first line keeps more second line options open and ensures any future combination of drugs can still be used. The Dutch doctor that promoted chemo was right about this, it's all about stepping stones and hopefully giant strides between them.
Where in the US do you generally reside? Are you close to a teaching hospital? Are you seeing a CLL specialist? Does your husband have any other health issues? Would his work schedule allow him to make multiple visits to the hospital in the initial ramp up phase of the O + V treatment? Having some general background information would enable members to give you more targeted opinions.
I’m not certain how indolent your husband’s CLL is but if he is like many of us he will probably need both O + V and Acalabrutinib treatments so it isn’t really an either or decision but rather it is a sequencing decision.
I know it feels overwhelming but having gone through 1 1/2 lines of treatment I can tell you that it will get better. Much better. Yes. I’ve had some low points but I have learned to put my head down and plow through the treatments and then it always gets better.
I’m coming up on one year on O + V and it hasn’t been bad at all. Next month I have a blood test and maybe a BMB (I have had three prior without any problem whatsoever) to determine if I should continue V for another 12 cycles or go off treatment, so my apprehension is building a little but I know I’ll work my way through the process as I always do.
I started my first treatment about 5 1/2 years ago and I have been able to live my life in a normal fashion. Your husband will be fine and the treatment options are coming along rapidly so he is in a good position. Do you know if he is mutated or unmutated? Eight years is a pretty good W&W period so that is a good sign.
Please try and relax. He has a lot of living in front of him 😀. Happy Thanksgiving!!
We live in MO and have chosen Brad Kahl a CLL specialist at Wash U/Barnes which is teaching hospital.
Unfortunately, it’s about 1.5 hours from us, O&V will be disruptive to his work, but we can make it work.
My husband feels fine and no other issues but his platelets are very low and I’m worried about complications if he were to have an injury. Hes in construction, rides a motorcycle, hunts, etc. He’s also very anemic, but doc says he doesn’t realize how low energy he has because it’s happened so gradually.
Thank you for your words of encouragement! All the info being provided is very hopeful!
Hmmm that is exactly what I was thinking, thanks for your candor. I see V&O as next level. I sure hope them 18 side effects leave & never come back. Congrats on the preliminary Remission…❤️🎉❤️🎉
Pacificview, I do not hear anything whimpy in your statements, none of the drug choices can be treaded lightly. These drugs are strong, they save our lives but there’s a cost to it all & I don’t mean just financial. I had the misfortune of trusting the wrong healthcare system & of having other chronic health issues. I am stronger & wiser now & determined to get the best possible care available for me. I no longer have expectations but requirements & that is for most of my relationships.
The Medical System has major issues & I will take on the responsibility of taking care of me, one less thing they have to worry about lol 😂 🤣😆🙃
I have not lasted 14yrs with this disease, been an RN for 31yrs & relied on GOD all my life since I cardiac arrested 3X before 10yrs of age without having some skin in the game. No more pity parties for me, I am here to play & all I do is win. But seriously I have adapted an attitude of gratitude 🙌🏾 You are doing fine headed toward the finish line from what I am hearing🥰
I had O&V with no side effects with one exception. The V part with allopurinol was fine. I started with O, and it took my WBC down from 156,00 to 1300 in a week. I still did infusions for five months, with the V/allopurinol about two months in.
The problem was that a three months after it was over, my oncologist, who I think was getting senile, told me to take a month of V without allopurinol. It took three days to end up in the ER with kidney failure. They initially told me I might have to be on dialysis for the rest of my life.
I found the conventional O&V very effective. My levels have been normal for two years. Just be wary of anyone who advises taking venetoclax without allopurinol.
Wow I heard it can go for the kidneys, TLS 😳 I am having cardio/pulmonary stuff with the BTKI & I am not opposed to a beta blocker or calcium channel blocker to protect my heart. I so prefer preventative stuff except for vaccines or IVIG 😞 Not Senile lol 😂 was your doctor very old?
HiI was diagnosed at 56 , stage 4. Straight of O+I , was clear of CLL cells in 240 days. On twice daily alcalibrutinib and 6 monthly MRD checks still brilliant and monthly bloods stable. So from my experience O is the miracle treatment.
Hi, I am 78 and just went on monotherapy with Venatoclax and I've had fewer symptoms and side effects than I did on acalabrutinib or ibrutinib. Was told it is not as cardiotoxic. Just have to take a month to ramp up carefully to avoid serious symptoms. Good luck, best wishes.
I was on imbruvica for 2 years and it stopped working. Since Spring of this yeart have been on O & V with no ill side effects and it has brought me to remission. The only negative and it is minor really, is that I have an episode of diahrea about 2 - 4 hours after taking the pills. I personally think the doctors should decide which treatment will most likely be effective and not place that decision upon you and your husband.
I just read all the replies to you and thought they were great. I started Acalabrutinib last December after 12 years on W&W. I am a little bit older than your husband and I still work. My oncologist recommended Acalabrutinib because I still work and would not have to make trips to the hospital. I had a visit yesterday with my doctor and may switch to Zanibrutinib because of having daily headaches on Acalabrutinib. I guess there is a smaller percentage of headaches on Zanabrutinib. Because your husband still works it would be easier to take a pill twice a day instead of the trips to the hospital. I no longer fret about the future and stay in one day at a time. I am grateful to have the options for treatment that are available these days. If your a reader read the book: “For Blood and Money”. It’s the story of how these miraculous drugs came to market. It will give you an appreciation of having the options we have today for treatment. It reads like a novel. I hope my feedback is a bit helpful. Remember, that we are lucky to have so many options these days. Take care!
I had the book on my shelf and when I went away for a few days this past summer I brought it with me read. I wanted to sit for a whole day to read the book. It was written well. I’ve never read a book as fast as I read it. It helped me to have gratitude that I was able to wait to get treatment instead of starting in 2010 when I was diagnosed!
I am a 73 year old female and I am presently doing O & V. I started in March and I just finished the O infusion part November 2. I had a few bumps in the road, V working too quickly so I had to be hospitalized twice (3 day stay each time) so I had to adjust the ramp up. Overall, for me, minor side affects. Although I am retired I have a P/T job and I did not have to miss work because of feeling poorly. The commitment is great because of the necessary monitoring with blood work. Sometimes 5-6 times a week in the beginning. A couple of days at first, twice a day. I live close to the cancer center so that was no problem. I happy with my choice of O&V. I just thought having an end was important to me. Ask any questions you want if it helps your decision. My best to you!!! PS My energy level has soared and I didn’t even know it had dropped because it happened so gradually. Feeling ever so grateful this holiday season.
Hi. I started V and O treatment last month. I actually have not started the V yet because I had some issues with O and am behind schedule. Age 61 and chose V and O because taking a pill for life can be a very long time at this age. I been feeling pretty tired and had a week in the hospital but I did have very high WBC and many enlarged nodes. I am lucky that I can take this first month off work, but I work as a nurse so I would be around a lot of sick people and I was neutropenic for a bit. As of now, despite the complications, I would chose this course. At least there is an end in sight and I was told I would likely get complete remission. Of course I have not started V yet so I may change my mind. Good luck.
I am being treated at the Duke University Cancer Center. I am 13q delete. I started Zanabrutinib on 8/23/23. I was able to see my visible lymph nodes in my neck shrink in 3 days. This week I told my wife that I feel better than I have in 7 years, since I got sick. I initially had some muscle soreness. I am much better after 3 months. I am in am exam room now waiting on the Dr. to see my blood numbers. I have gained a little weight back and regained some muscle I thought was gone forever! The lymph nodes in my abdomen have also shrunk. They were pressing on my bladder. I am glad that is over. Good luck! Of my Brunkinsa stops working I will try the O&V next. But right now it’s working great! 2 pills twice a day. Take care
That’s amazing! I sure hope my husband responds so well! Thank you for sharing your experience. It sure makes moving forward less daunting knowing others have done well!
My husband has only had swelling in the inguinal nodes, but it was significant. We were able to get those down with Assisted Lymph Therapy (ALT). Maintenance with vibration plate (daily) and monthly ALT. Have you tried that therapy?
He had a BMB today. Last year it took all of five minutes and was painless and this year it took almost 3 hours and was very painful.
CB1391: I was recently faced with this same decision. I chose the two drug approach of V&O over monotherapy with a BTKi. First of all, I don't like taking any pills - not even aspirin/tylenol for a headache. So the thought of being on a BTKi indefinitely was too much for me - the chances of reaching umrd on a single BTKi is remote. Secondly, one also runs the risk of developing resistance to the BTKi. The choice of O&V - according to some recent trials - could yield a durable response/remission/umrd for up to and even over six years. I wanted to get "on and off treatment" and put this CLL in the rearview mirror for a long time. Thirdly, your husband is only 58 - I am a bit older and also in decent shape otherwise - I firmly believe that assuming a long lasting response there will be a "close to cure" (whatever that means) in the next 6 to 10 years. Check out the newer pipeline treatments like non- covalently binding Pirto and Nempto which may bind to BTK protein even in the presence of common mutations that make other BTKi's stop working. THEN there is a pipeline drug that binds both covalently and non-covalently! THEN, BTK degraders like NX2127 are promising which break down/destroy/eliminate the whole BTK protein rather than just inhibit it. THEN, there is the promise of "base editing" from europe which actually changes DNA to create "New Super White Blood Cells" -likened to a pencil and eraser approach. LASTLY, new "Bi-Specific Monoclonal Antibodies" such as Epcoritimab are in trials today - which engages T cells to kill the B cells.
My point is that treatments are evolving/changing rapidly. Recent trials have shown that triplet therapy like A,V &O or P,V &O (only at MD Anderson) may yield excellent results Not all of the above drugs are approved for CLL but the options mentioned above seem to be the future. Having favorable markers I am grateful that I was able to maintain W&W to get beyond the AE's of FCR and 1st gen BTKi's.
The big decision for me was 1. Do I "kick the can down the road" with monotherapy knowing that umrd is unlikely- that continuous treatment is almost assured - and then wait for the possible approval and proven efficacy of these new therapies OR 2. Do I choose a duplet (or possibly triplet) therapy like O&V and hope to "get it over" in 48 weeks and then wait for the next pipeline approval if I ever need it. FOR me, and not as definitive advice for anyone else I chose #2.
One final thought, with O&V most docs start with O. My doc starts with V in many cases since the V ramp up is much more gradual than the O infusion of 1000mg over 2 days and debulking with V and of course Allopurinol is much more gradual. Of course, IVIG,FISH and Bloods at the start of treatment will likely present some options and eliminate others.
This is not medical advice - just my story and what I've learned from journals (over a years of research) and member posts/experiences/opinions. As I am just a few weeks into treatment I will post my results from time to time. And I too did pray on it - maybe the best medicine ever. Best to your husband.
I was at a similar point in age and progression and presented with similar decisions a year ago, although at that time zanubrutinib was still pre-approval so I considered it in the context of a trial.
Both are good treatment options with pretty good evidence of positive outcomes. I'd give some thought to the downstream outcomes though -- how close will you get to remission? how long will that remission last if you achieve it?
I think the decision comes down primarily to this:
V+O is a fixed duration therapy, so while the side effects are definitely more of a factor, the flip side is you are done in a year or two and may have several years of drug-free life.
Zanubrutinib is a continuing therapy. You are unlikely to reach remission with Z, and so will be taking drugs for an indeterminate period.
There is some evidence that CLL will eventually evolve around whatever treatment you are receiving, as natural selection leans towards cancer cells that survive their environment. So my reasoning was a fixed duration stood less chance of CLL mutation into something more problematic. At 58, you'd be on Z for quite a long time (hopefully).
I agree with your oncology team - get treatment over with!
I wrote a lengthy thread with more details on decision points and there were a number of helpful replies. They're here: healthunlocked.com/cllsuppo...
Good luck. Rest in the knowledge that God has given you a few good choices here and no choice is likely to be a terrible one. That was not the case a decade ago.
My CLL specialist told me that I should not mountain bike, snow board snd participate in other high risk activities I love due to the risk of brain bleeds on a BTK inhibitor because it thins the blood. This for me was a big one and it sounds like your husband is quite active as well. So might want to ask your CLL specialist about this ….
And secondly, a limited duration, even though it’s more time first two months made sense to me vs a lifetime pill at a younger age.
I started the infusions September 14. After the first two my WBC went from 350k to 1k in a week and that was a very hard week and was unable to do anything. From there infusions improved, tired a couple days afterwards. With the V, took a bit for body to adjust but manageable. Now biggest thing is stomach upset but totally manageable. Numbers look good, Hgb low but higher than what it was. I had to get blood tests 3 days a week for 5 weeks, but was happy to put in the time for what I see as the benefits of this treatments for my lifestyle.
Hi yes doing well thank you. I am just finishing my 3rd cycle and feeling good! I just saw your update and that your husband is leaning toward Zanubrutinib. I hope that goes well for him!
Christ is our healer indeed! I’m close to your husbands age too (54) and all the CLL specialists that I’ve seen, including the head CLL doctor at National Institute of Health, have all pushed for V&O. I am 13q and mutated. That being said, I thank God we have options!
Like Rick 48 I began treatment with O and V nearly five months months ago and I have had few side effects. During the first part of the first infusion I got backache and very cold. I was also very tired that evening. After the second part of the first infusion I had an abundance of energy which compensated for the fatigue the night before. I agree that one has to have lots of blood tests but would certainly recommend this treatment based on my experience to anyone. Hope this helps.
I have been on O&V since Feb of this year. The only real side effect I had with the O was I didn't sleep the night after infusion. I was told that was because of the steroid they give prior to the infusion ( you're given a steroid, tylenol and benadryl before infusion). I also developed a headache during the infusion. I have been tolerating the V pretty well. My labs have been stable. Unfortunately I have had no appetite since starting the V. Never have hunger pains and I have lost about 35 lbs. I finish the V in March and am hoping my appetite comes back! My activity level is definitely decreased but I walk our dog every day and do a lot of resting throughout the day. I am a retired RN and worked in Oncology during my career and I can say that the new targeted medications are amazing compared to "traditional" chemotherapy. This CLL diagnosis is my 4th cancer diagnosis, I am 58 years old and plan to live a long happy life!! God bless
I think the replies you've received has covered the subject very well. I was where you are about one year ago. My specialist is a very well known expert in CLL at Moffitt Cancer center in Tampa Fl. At that time we were talking about Acalabrutinib or O+V. My hematologist in Naples presented it to me like this.
I could take Acalabrutinib (Calquence) every day for ever or until it quits working or try V+O for a year and possibly be in remission for 2+ years( no guarantee) and take nothing.
I am 74 and decided on V+O.
PROS- I essentially had no side effects from the medication/ infusions.. My blood except for my wbc is back to where it was 4 years ago. Swollen nodes gone in a month. Good Pet in 3 moths. Has exceeded my expectations.
Hgb went from 7.4 to 11.9, platelets from 50 to 160. Currently on hold as venclexta has tanked my ANC after 3 months. Dose will probably be lowered from 400mg a day. See my Dr on Tues.
CONS- They have to watch your blood very carefully so you may go in for blood tests once or twice a week. The O infusions are every week for a month and then once a month. I think there were 9 total infusions. These take time depending on what infusion rate you can tolerate. You won't know till you start. In my case it was always over 6 hrs to complete the infusion .I had a reaction in the first 10 minutes of the first cycle that was resolved quickly by the nurses, After they reduced the rate I never had another issue for the last 8 cycles. If you can tolerate the max rate it's probably 3-4 hrs
Good luck. I chose V+O because I liked the idea of maybe being in remission after a year. At least for a couple years.🙏
Also there will probably be another treatment option available in 2-3 years. I think Zanubrutinib was added to the treatment options at the end of 2022.
I think your expectations are set low. I hope you will be pleasantly surprised.
I'm atypical, u-CLL, ATM del and SF3BI mut + bulky lymphs >5cm.
At the start of cycle 7 I was unconfirmed CR, needs a BMB for confirmation and that's not until next year. Bad markers or not I'm responding well. I'm hoping for nearer the 66.6 month median from start of treatment for u-CLL on V+O. Even the 80% PFS, I call anything less the "zone of disappointment", is about 42 months. So remission over 31 months and up to 56 months from end of treatment.
I had O infusion by itself in 2012, and V by itself, from 2019 to April/2023. Both were fine, no side effects whatsoever. I'm sure that together the side effects would be zero to minimal. I am currently on Zanubrutinib with monthly infusions of Gazyva since August of this year. It is extremely effective, as was Venclexta. However, unlike Venclexta, Z has caused some side effects, mainly mild diarrhea and extremely itchy skin. When I scratch the intense itchiness, petechia appears on my skin. Bruising used to occur as well, but that has gone away. Other than that, there are no other side effects, and more importantly to me, Zs effectiveness has been dramatic. Within a few days my health did a 360 and I went from feeling severely unwell, to feeling fantastic. All of my blood results have returned to normal. O and V are extremely effective as well! Basically, your choice might be up to whatever is more convenient for your husband.
I found O & V to be a smooth and uneventful ride and compltd the entire protocoll Dec 2020, and I was able to carry on my usual activities during treatment.
No one, except my immediate family, knew I was spending time in an infusion chair.
And,
assuming your husband's eventual treament involves infusions, I heartily recommend his having a port installed.
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