I live in the UK and am eligible for venetoclax combined with obinutuzumab as first line treatment. I have been on W&W for about 4 years and now as my glands and spleen have been growing (no B symptoms though) I have been offered this treatment. I am due to start in March. I am quite hopefull as my doctor said that the treatment would last only two years and there is a chance of long remission after that. As I am quite young, 43, I see it as good news. However I am a bit worried about the side effects and mainly the white blood count dropping drastically and heightened risk of infections. So far my health has been very good, I haven't been sick or ill at all and have worked on boosting my immune system through diet and supplements since my diagnosis.
I'd be grateful if some of you would share their experiences with this treatment please? Of course I understand that everyone can have different reactions to the treatment but would be interested in reading your opinions and advice ( if any) as well.
Many thanks,
Leila
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Leilalala
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Click on my profile & read through my occasional (& positive) posts updating my experience with the treatment you’re eligible for. They say far more than I can say here.
In short, if my experience represents anything, it’s that you’re in for a wonderfully fast-acting, shockingly effective, largely side-effect-free year.
... Or two. It’s usually a one-year schedule, so I was surprised to see you mention two years?
Dave thank you for this fast reply, you put a big smile on my face 😄 I will definitely check your profile! And happy to exchange again in the future if ok with you!
I have been on V + O since March and I am very close to remission. I was on watch and wait for 10 years. My treatment schedule is one year so I should be finishing April 2021.. I have had little if any side effects. Yes my white blood count dropped from 250,000 after the first infusion to 3.2 but I have not been sick with any infections, colds, nothing. And I had labs done last week and my white blood count is finally back up in normal range. It’s a miracle drug for me. Check out my posts about my treatment journey.
And I concur with what DRM18 says. Everyone reacts differently to treatment but for me, it’s been a blessing.
Hi Sally,Thank you for your reply, this makes me very hopeful. I was reluctant to have treatment for a long time, but I am looking forward to it as my glands and spleen are getting visibly much bigger, and my white blood cells going up. I will definitely read your posts. Best of luck. Leila
after 18 years on W&W I started on V&O on March 2nd, in the UK. I was well when we elected to start treatment; low platelets (80-90) and a slightly enlarged spleen were the only symptoms presenting. The treatment protocol was a fixed 12 months duration. I had a strong reaction to the first infusion and spent an extra six days in hospital. However, as a consequence of the infusion my lymphocytes went into the normal range , quite extraordinary, for the first time since pre-2002. The detail can be found in earlier posts.
My consultant decided to wait an extra week before the second infusion and then covid-19 complicated everything and further infusions were put on hold. We managed to start V and I spent 6 weeks on a 50 mg dose to try to retain the infusion improvements before reaching 400 mg daily in the first week in June. I have two infusions remaining and have not experienced any adverse reaction since the first one. I still pack an overnight bag before each infusion, my security blanket/talisman.
Side effects from V/O and other medications have been minimal. Forme, with all the usual caveats, it has been a remarkable treatment. My only advice would be to take the liquid consumption of a minimum 2/3 litres daily, seriously.
Hello,Surprised to hear that you were able to start V and O in March as I thought that it only became available on the NHS in November 20. Great to read about your journey, thank you for all your info and advice. I am about to start it in January.
As you say first line treatment funding was agreed only last month, by NICE, fantastic news. Nice agreed second line funding in 2019. We are so lucky to have our NHS , let's keep it that way!
However, my treatment has been funded by Bupa with the encouragement of my excellent consultant. After retirement I decided to continue paying into Bupa as long as we could afford it as the treatment options continued to expand and improve. The last 5-10 years have been dramatic in terms of the treatment landscape. With Bupa funding we were also lucky enough to be able to decide on a start date that suited us.
So far, so very good! Very best wishes for your journey.
Hi Michael, thank you for sharing your experience and your advice. This is very helpful for me. I am happy that the treatment works for you despite a difficult start. I wish you good luck on the rest of you journey. Leila
Thank you Refuah, I wish you good luck on your journey and hope everything works well for you. I'd be happy to learn about how the treatment works for you if you are willing to share if course. Best of luck. Leila
Hi, I started Obinituzumab infusions in late August this year and Venetoclax ramp up a few weeks later. Had a severe reaction to the first infusion, with vomiting, and extreme lower back pain. Nurse and oncologist treated the symptoms and I was fine within 15 to 30 minutes. All my infusions since then have been event free!With the Venetoclax, I have had stiffness in thumb and finger joints off and on. Not at all severe, just slightly painful. Mostly just annoying. My wife loves to have her neck and feet rubbed, and I usually rub them every day. But now, it is uncomfortable for me to do that, so the sessions are shorter.
Curious about why two years on V. My oncologist has said I will be on it for two years as well. She was supposed to send me the reference to this but I haven't received it yet. I sent her a message and hope to get a reply this week. All I can find on the Venclexta website is referring to one year when used in combination with Obinituzumab.
Hi dvd1955, thanks a lot for taking the time to share your experience. To be honest I haven't had a proper discussion with my doctor about the treatment. They are supposed to send me info but I haven't received anything yet. My next appointment to discuss this is 3 March 2021. I am just finding out that most people on O/V have it for 1 year only. Will ask the doctor when I see him next. I will let you then why he is planning a two year treatment. And btw your wife is a lucky woman to get her feet rubbed every day, I will tell that to my partner 😄.
Had another appointment with my oncologist Friday. She said I was right about the treatment time - it is only 121 months when used in combo with Gazyva. She updated my treatment plan. So only 8 more months to go!
Hey that is such good news! I will definitely mention this to my doc when we discuss treatment plan. I really now can't wait to start as my glands are massively swollen around the neck. Thank you for your update. And please don't hesitate to keep me posted about the end of your treatments if you wish to. It'd be nice to hear from you again
Hi Leila, I started this treatment in Nov with my first Obinutuzimab infusion, in the hospital. Reactions are very common with the first Obinu infusion. I had fevers and was in the hospital for 8 days. They are on top of the WBC dropping drastically: My dr does the first IV in the hospital because as all those white blood cells are dying, they flush them out of your kidneys with tons of fluids and keep an eye out for Tumor Lysis Syndrome (I had it but never knew it and they give fluids accordingly). And when my WBC went too low, they gave me an injection to raise it.
My 2nd treatment went well and I only got really itchy at one point. They stopped the IV and gave me allergy meds, waited and continued.
The best part is my WBC is now 4,000 (from 80000), and I feel great.
Third IV is in January, along with first dosage of Venetoclax.
I wish you luck and keep asking questions as needed!!
Hi NW,Thank you very much for sharing this. I'm sorry that you had to stay so long at hospital for your first I fusion. I am a little bit worried about this as I have two young children. But I'm ready to take whatever comes at me. So far, from what I am reading thanks to all the great messages that have been sent to me, the benefits really outweighs the rest. It seems that most people are satisfied with their treatment which is very reassuring.
Hi LeilaWe are practically CLL buddies!! I too am new to this and still trying to take it all in having been a fit and active cyclist most of my life. Now 66 and due to start treatment in Feb. I too am being put on Omnutuzamab and Venetoclax so we will have to keep each other updated on our progress. I have been so heartened by all the support and information coming from this forum that I feel so much better informed than I was before I joined. From what I gather the drug combinations we are having our some of the latest and most effective around, in fact my haematologist at Maidstone Hospital said I will be her first patient using this combination although there have obviously been many others having it in other centres in the UK. I do know they have not been licenced for too long so I guess we are pretty lucky. Anyway I will try and stay in touch. Stay safe and my best wishes for a happy and healthier New Year! Patrick
I do feel lucky as well that we have the chance to access this treatment in first line. I couldn't bear the idea of having to take treatment for the rest of my life. My mother who has been diagnosed 25 years ago has never stopped being on treatment. Things are better now since she has been on Ibrutinib, but she lives in France and I'm not sure if she is eligible for Venetoclax.
I am definitely happy to keep in touch and share my experience on V/O, and hear about yours. Yes the support on this forum is amazing. I must say I take most of my info on CLL on this forum. I prefer learning from real life experiences than studies and statistics that tend to freak me out. That's why I have stopped reading anything else really.
I wish you all the best on your new journey, and will speak again soon.
I started treatment with the Gazyva and venclexta regimen October 2018. I was part of a clinical trial. The trial protocol for administering the drugs were the same as what is now FDA approved.
Here is a link that gives a clear and concise summary of the treatment -
The treatments begin with the Gazyva infusions. The most adverse condition that I experienced during treatment occurred during the second Gazyva infusion. I had a short bout of the rigors and nausea which passed within a half hour. I was able to leave the clinic each day after infusions, and I was able to drive. Although the rigors were tolerable, I believe that I would not have experienced them so intently had I told the nurse sooner that I was feeling the onset. All they did to relieve them was to decrease the infusion rate.
However mild, for me the more adverse experiences during the venclexta dose ramp were diarrhea, leg cramps at night, and nausea.
It is very important to be adequately hydrated at all times including just prior to beginning treatment. I drank an average of 72 oz of water throughout the day. I also found that after I reached full dose venclexta (400mg daily), the nausea was less if I ate dinner around 7:30 PM and took venclexta around 8:30 PM, and then went to bed around 10:30 PM.
Two other equally important practices are eating well and exercise. My main form of exercise is riding a bicycle.
You can also find resources here that offer diet and exercise information. For starters -
I was confirmed UMRD at 11 months into treatment, and I am now 11 months post treatment. From my point of view at this time, my quality of life has improved beyond my pre treatment expectation. The questions at hand are "what will the durability of remission be, and if there is a relapse, what will be next?".
Hi JM, Thank you very much for the thorough information, this is extremely helpful and useful. As you may have gathered, I do not know much about this treatment and am learning a lot thanks to you and everyone else you has very kindly taken the time to reply. I haven't had the time yet to go through the links you've sent but will do asap.
On a funny note, symptoms you describe (leg cramps, nausea and diarrhea) remind me a lot of my pregnancy symptoms 😆 (I understand how unpleasant it can be though)
I am very happy that the treatment has worked well for you!
I started O and V in late September of this year when my wbc was only 61K and ALC around 52K if I recall. But my hemoglobin was 6.5 and platelets ~25K, so urgent treatment was needed after 6.5 yrs on w+w. Had a minor reaction to 1st Obinutuzumab infusion given as outpatient (rigors, flushing). This is so common, not to worry). Subsequent infusions perfectly fine without pre-meds. (No TLS). My wbc dropped like a stone to 0.7 which was a little unnerving, as prior to Covid, I worked in health care. Have had no significant issues although wbc and neutrophils will likely remain low(ish) until I complete the Venetoclax towards end of 2021. Platelets are recovering nicely and my hemoglobin is now normal. I have had no infections 🤞despite a low IgG. I couldn’t be happier and feel confident in my care team. I have 2 Obinutuzumab infusions left, to complete a total of 9. Hoping to reach uMRD or something close. Like you, I wanted a time-limited treatment that had a good likelihood for uMRD based on the short term data that is available. I do appreciate that there are unknowns and no guarantees as to degree or length of an expected remission. To be sure, the
O and V schedule is pretty intensive to start, but as a fit, active and otherwise healthy 69 y.o. male, I feel like I am “breezing” through it, in retrospect. I hope that my experience is reassuring to you. I wish you a smooth recovery.
Hi, I apologise for the late reply. I wanted to thank you very much for your very reassuring post. And for taking the time to share your experience with me. It is very helpful to read you and others that have posted about this as I'm feel like it's becoming less of an unknown to me. I can definitely see that the benefits highly lightweight the risks and I'm actually really looking forward to start treatment now as my glands are just out of control. The rest of my blood count is quite stable though with moderate progression as my doctor would say. Please feel free to share more about your experience if you wish to, I'd be happy to hear from you again.Good luck on the rest of your breezing journey
I started V & O in October. My white blood cell count was at 188,000. I started treatment because my hemoglobin started going down to 10.2. I was on watch and wait for over 6 years. I’ve had very few side effects from Obinutuzumab. I’ve been slow to ramp up on Venetoclax due to low neutrophils. But it has gone very smooth so far. I’ve continued to stay healthy. “Knock on wood” I feel like it’s a great treatment and happy that I started. I do feel like a big weight has been lifted off my shoulders since I started treatment.
Hi Sheryl, please excuse me for my late reply. Thank you very much for sharing your positive experience with me. It's nice to hear that a weight was lifted off your shoulders which is exactly what I'm hoping to feel now that treatment time is getting close.I wish you the best of luck on the rest of your journey and don't hesitate to get in contact again if you wish to
I have almost exactly the same age as you (very rare on this community), and am "flirting" with the V+O combination, as I may need to go into first line treatment in 2021.
Looks just that you are slightly ahead of me in terms of timing...but let's follow each other!
Here is my personal strategy for 2021:
1) Get the Covid vaccine, as soon as it becomes available for folks with CLL. Here in France, I hope to be part of wave 3 out of 5, but our desease has not yet been properly classified.
2) Allow my body for at least a month to produce antibodies. As I am young as you are, and all my other blood counts except for the lymphocytes, of course, are still in the normal range, I don't consider myself yet immune-depressed, so I think I have a fair chance that my body will produce antibodies just as anyone else, so I want to get this done as soon as accessible for me. Even more so, as Obinutuzumab may make us much more fragile to get bacterila...or viral infections.
3) Then start most likely V+O, if I get access to it here in France, or somewhere else.
It is great to see that so many people in this chat have had good experience, both in terms of no/low side effects, and as well in terms of their resposne.
The big question that only time....and many of you in this chat will be able to teach us in a couple of years from now, is how long the remission, and ideally MRD negativity thanks to V+O will last. At the latest update from the June 2020 EHA - European Hematology Association congress, we can see that PFS / Progression-free survival after 48 months is still 70% (for the IGHV unmutated, or lower blue line) and 88% (for the IGHV mutated, or upper blue line), sorry for the bad screenshot:
MRD negativity has also been great, even though we could see at EHA that it is fading away with the years.
However, there are 3 important elements to consider that personally give me a lot of hope:
Firstly: as mentioned above, a very significant percentage is still progression-free after 48 months, and many of which still MRD negative, and this is great news!
Secondly: Those who are progression-free, but for whom MRD is swinging from MRD negativity to being MRD positive, can hope for at least another year of PFS
Thirdly: The big advantage of this time-limited treatment, and particularly (but not only!) for our “young” age group, is that there is reasonable hope that within a year or 2 of treatment, no resistance is being developed, and that we could therefore use the same treatment again as a second line, before using other arms, such as Ibrutinib, or other combinations.
Therefore, to me, even though it is kind of a bet right now, it looks really like a very promising first-line treatment at this stage, and still shows great results.
If anyone has access to an update from ASH 2020, please let me know...
I've been meaning to reply to you for a while as your experience resonates with mine. Like you said our ages coincide also I am French too. I live in the UK though and was diagnosed after I moved to the UK so my whole follow-up and treatment plan is happening in the UK. I feel very lucky that this treatment is available in first-line now in the UK and that I was offered it.
I'm not sure about the situation in France although my mum has also been diagnosed with cll 25 years ago. She has been taking ibrutinib for a while now although it gives her quite a lot of infections as a side effect she hasn't been yet offered any other treatment. I'll be happy to hear about your treatment plan in France and whether you will be able to access V and O.
Like you I don't feel immuno suppressed as I have been super healthy and apart from my lymphocytes count and white blood count my blood count is rather normal. However now my glands are really out of control, they are huge around the neck and I feel very tired but I must say I also breastfeed a child all night long !
In the UK I should be offered the vaccine around mid-february, I assume it will give me time to develop antibodies before I start treatment.
Yes I'll be very happy to stay in touch with you alongside our journey. I will get in touch again when I start my treatment and let you know this is working for me.
We can use the private messaging system if you wish to.
My husband has started V and O in November, no side effects from O except he went in fairly neutropenic with WBC , platelets, and neutrophils very low which is not helpful. Venteclax makes his stomach very upset, and we are working to see what and when he should do when he takes his 400mg daily. He is now getting shots for neutropenia. Very worrisome with covid rampant. He is 11Q deleted unmutated....and this is his third treatment.
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