Hello friends Feeling very confused ! I started treatment last December on V& O. I have had a few problems and side effects throughout . Not being easy at times . However am greatful to receive one of the latest treatments . My treatment was for 1 year. I have responded very well . Today i had my monthly video call with Haematologist . All my markers were good . And stable so I asked once again, What is the plan for my end date, I was told , I will continue untill it stops working !!!! Have now resolved to tears . Last 3 months I have had 3 different answers by 3 people and telling that I have responded well .
She is the only that has said will continue!! .
Has any one else been told a year than told will be continuing! I am also struggling with chronic fatigue and fibromyalgia, I understand they are very similar.
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Stavrou1
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I am almost certain that OandV is a 12 cycle treatment… that is what happened with me . Maybe ring to make an appointment to speak to consultant or someone who can confirm your treatment . If you started in December last year you are well on your way to reaching the end 🤞 good luck by the way I am enjoying my marmalade every morning 😂
Thank you Hilo for your reply My agreement I signed is for 12 months . I am going to collect my next month's Venetoclax tom morning . I will see if I can get hold of my Mcmillan nurse . Otherwise will call.
It is my understanding it is a fixed time treatment (12 cycles which actually isn't 12 calendar months, it's roughly 11 months). I would ask for a flow cytometry test to test for UMRD. If it comes negative then you should be able to stop. I finished the same treatment in June and it felt really good to stop taking the pills. I had lots of side effects and was really happy I could have stopped after 12 cycles. Let us know what you find out.
Thank-you for your reply Poodle . I will take everyones advice and speak to them and asked for a flow cytometry test. That's really helpful.Will update you all.
I have 6 monthly Flow UMRD and monthly bloods.. all stable. But will never come of treatment currently(Acalabeutinib), when that stops working I will move to another. My consultant has no plan ever to take me off treatment.
👋 thank you for your reply . Am not really clued up ! . But I think your treatment with Acalabeutinib there is no time limit to stop it unless as you said it stops working ! . Good to hear your stable. And hope, for a very long time . It's uplifting and positive . 😊
I am currently at cycle 7 on O & V. My expectation is for UMRD testing after I finish the 1 year protocol. The results of MRD testing will motivate me to continue or stop treatment. Technically I am in remission because of my blood numbers being pretty much in normal range. Spleen greatly reduced size and symptoms, no known lymph node swelling any longer, good appetite, weight gain and generally feeling better.That said we know MRD status at the end of a treatment protocol is a powerful tool. I plan on asking for it and making sure I get it. Because we know from trial follow ups. Better the MRD numbers, generally the longer our time is before we progress again leading to treatment once more.
So if I were in your shoes. I would ask, why do you want to continue the treatment? Have you run MRD testing? What are the results of that testing?
Thank you PacifiviewThank you for your reply . Will take your advice , and ask for test . It's not been mentioned by any of the specialist to do this !! . .Good to hear you are doing well and in remission.. 🤞.hope when your time comes to testing are good results .
I have been on V&O for maybe 8 or so months now. The only side effect I have is almost daily get diarhea within 2 to 4 hours of taking the pills (400 mg X 4). My hematologist, who is very knowledgeable with the latest treatments just told me I am in remission but I continue the medication. I am fairly certain that someone told me that I would likely be on the Venclexta for 2 years, but I could be mistaken. I was diagnosed in 2020 and on Imbruvica, which stopped working after 2 years. As long as the medication is working for you and you have good numbers, maybe try not to worry about how long the cycle will be...just keep doing it and hope it keeps working.
Thank you Phyllis for your reply .Poor you suffering with diarrhoea. not nice , I am very lucky to only suffer it at the begging . I do have IBS and thats horrible . It leaves you drained!. I think your absolutely right Phyllis if the medication is working so let be . Thank for that .
Hi, I started the same treatment January 2022 and was told it would be for 12 months. Due to horrible side effects I finished treatment early in November 2022 as the treatment had done its job. All markers back to normal but I am still recovering from the effects. I am still suffer from fatigue and have to modify my lifestyle but slowly making progress. Best wishes
Thank you for your message. That's amazing news , that all markers are back to normal ... .. My understanding on side effects can take 1 to 2 years . We are all different . It's sensible to modify your lifestyle untill your body is ready . Wish you all the best . 😊
Sorry about your side effects. It has not been fun that is for sure. Have you gotten tested for residual disease?I know my Doc said 3 months ago that I was in remission. But then there is MRD testing which I have not had yet. Treatment for me ends in April 24.
Pacificview thank you for your reply . No I haven't been tested for residual diese. . I am not sure if I have had a MRD testing , am assuming every has that one during treatment and before you finish ! . I have my next video call and bloodtest in mid January I will ask . On a positive side, some side effects are better . I had daily episodes of feeling really ill , and nausea , both gone . Onwards and upwards . I hope . Wish you well , your just a few months away . 😊
I did the V&O as part of a trial. My treatment was stopped after 9 months after 2 tests showed I was UMRD. It's now 2 years out and my bloods all come back normal and still UMRD. I never any bad side effects that were intolerable and have pushed this disease out of my head except for my quarterly blood draws. I am surprised they are still continuing to treat patients after obtaining UMRD status. I guess treatment protocols haven't caught up to us guinea pigs from that trial. I would discuss this with your doctor or get a second opinion from a CLL specialist. I entered the trial under Dr Mato here in the States and it was the best thing I could have done.
Thank you Jerard for your message . Interesting to read . Good to hear your doing well . And hope it continues . I will definitely follow it up with specialist . I am not aware I have had URMD testing . All the best 😊.
As others have said, the typical protocol for the V + O protocol is twelve cycles of V (roughly eleven months) and six months of O. However, the doctors are still learning about this powerful treatment and making changes based upon the individual patient and each doctors’ understanding of the medication.
Many doctors feel a patient should stay on V for longer than twelve months if the disease is still detectable in the blood. Other patients whose disease tends to aggregate in the bone marrow may consider a BMB to see if the disease is detectable there after twelve months of treatment. And if the disease still detectable another twelve months of treatment may be considered.
Still other patients have been on V continuously for many years often at a lower dosage. It’s confusing since each CLL patient is different. What works for one patient often doesn’t work for another patient based upon disease profile.
Ask your doctor why she is recommending a longer course of treatment. Perhaps you have had your blood checked for detectable disease and there was some disease noted and the doctor opted to have you continue on V for longer?
Thank you Hope for your message . You have explained it very well . it depends on individual of course makes sensec ..... if I need to continue untill it stops working, than i will . I am going to ask to have a face to face for my next appointment in 4 weeks . And I will have a list of questions to ask . Thank you 😊.
I started O in March and V in April . I asked my doctor a few times when I can stop treatment . He told me no matter what the result is , I will stop Venetoclax after 12 month which is next April.
My husband was on this for a fixed 12 month cycle. His Venetoclax dosage was reduced to 100 mg by the end of the treatment due to 2 bouts of Neutropenia. These are very powerful drugs and I was so happy when the 12 months came to a conclusion. That said, my non-medical take on this is that once the treatment is complete, the recovery can begin. His immune system is still low and will probably remain so until 1 year after the last O infusion. Every month gets better, but we are in recovery. Everyone is different, but I would ask why your specialist is recommending a longer treatment course. We are blessed to have these medications. I can't imagine the pain and suffering people would be forced to endure without them!
Thank you for your message lisakc . I had Neutrophenia at the start. Indeed these are powerful drugs , with many side effects as I have expiernced . Aso greatful we for a amzing NHS . Bless your husband , it's tough when it's a struggle on a daily basis the highs and lows for some of us . It will pass and life will move on to good things .
hi, I started V on its own last November. First few months were horrendous as it wiped out my immune system and I ended up with infections that hospitalised me! Any how, I got through it and have been great since May. Back at work, gym, golf etc, full of energy. However I am on V until it stops working which I hope is years from now. Mono therapy indefinitely is quite common, I’ve a colleague been on it for six years. My sense is that like FCR we want the V to knock the CLL into touch for years knowing it will come back but for some of us the Dr believes staying on it is the best option. Sorry you’re getting mixed messages
Thank you for your message Lawand 1. I am sorry to read your terrible experience.. wonderful news your doing very well and getting on with life . Uplifting. No apologies needed , everyone has been very helpful . I have learnt a lot. Stay well . 😊
Hi- I was part of the study given V andO. The study was hoping that I would be done with all treatment within a year but if I MRD was not close to zero I would continue it for another 24 months. I was able to stop treatment after 12 months. I do not need to take anything at all. I am hoping to be in remission for 5 to 7 years according to the study. I don’t know your ptosis. I was given 400 MG daily of V. I was only giving.O for about the first 6 to 8 weeks of my treatment. About six weeks and I started V. I hope this information is helpful.
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