..... i must add to my previous posts: I asked my Consultant how many patients he has treated with this combo.
His answer shocked me: He said 55 patients. I was expecting 2 or 3 more zeros after that number.
That is both in The London Clinic and Barts but excluding clinical trials.
Wow!! Actually my consultant in Kent told me 3 months ago when she was proposing O&V that I would be her first patient on that regime!! She must have had a few since then but I do think we are very lucky to be having these drugs which seem to be the gold standard at the moment. Hope mine go as well as yours. All the best Patrick
O+V is one of the newer combos to be used in treating CLL. And each country has an approval process that is different.
Also, it is not used in all CLL patients, so, with CLL being considered "rare"---and generally a cancer in elderly patients, there are most likely many hematologist who have yet to treat patients with O+V. In addition, the selection of treatments that are suited to one CLL patient but not for another has given Drs. a leeway to be more discerning as to what treatment will best suit a patient at a given time.
All a blessing as the development of the regimens has grown in the last 5 to 10 years beyond what one would think possible.
Best wishes with your O + V. and please do keep us updated as you proceed.
our disease is considered an 'orphan disease' When your in the 'bubble' you think there are millions but not even close.
I was speechless!!
However this is an amazing combination.
I was told I would need this therapy for 1 year only
I would really love a time limit. Unless there is reason for change I will be on Ibrutinib until it stops working.Many people dont realise that the treatments for cll have changed dramatically in the last 10 years. I had fcr in 2010. It was the best there was.
A few years later ibrutinib was being tested in the uk. Other drugs started to be tested but only for those who hadnt been treated before.
When I began Ibrutinib it had not long been agreed on the nhs. It had only been agreed for previously treated patients and to begin with they wanted it for older aged patients. I was 62 and luckily a petition successfully got a lower age limit agreed. New patients had fcr.
Things are changing again in the uk. Its relatively recent that combination therapies have been agreed outside a trial. The people taking them began on a drug trial in the uk.
There is the prospect of a cure. Anne uk
Ann,
They are all talking about a cure for CLL , I think if it is a 5 year plus remission, it is termed a cure.
We are lucky in the U.K. with the fabulous care we get.
I refused Ibrutinib because of my concerns over the side effects and also because it was not a time limited therapy. This one is for 1 year.
Wishing you the Best,
Rita
Rita, there are people who are approaching 20 years remission after being treated with FCR. About 55% of those who are IGHV mutated (that's about 50% of us), found that if they made it to 7 years remission, their remission was indefinite. Unfortunately, most of us are over 65 when we need treatment and FCR is not easy when we are older than 65.
Specialists are reluctant to call this a cure, because CLL has a reputation for always coming back. The 5 year remission is relevant to acute cancers, but not a slow growing cancer like CLL.
There's an expectation that the deep remissions achieved with Venetoclax in combination with other targeted therapies will see these long remissions or effectively a cure, but we only have about 3 years of experience with combination therapies. The good news is that these combination treatments are gentler and there's not the 65 age limit. Also, those who are IGHV unmutated are also experiencing long remissions on combination treatments.
Neil
Interesting, thank you very much Neil.
That’s really interesting and I didn’t know all that 🙏
Hello AussieNeil
Some of the MD Anderson doctors are suggesting that 10 year remission is being considered cured, even though the text books say no cure. Blessings.
I have a feeling I might also be the first to have it in my hospital, which concerns me a little. How can the nurses recognise if you do have a reaction, and know what to do about it if they haven’t seen it before?It’s a bit scary.
Cx
Well in my case, because of our lovely friends on this site and their posts / comments, I was prepared.
When I felt a slight fever, shortness of breath and heavy chest, I called the nurses and they slowed the drip right down.
It really helped me but they took about 8 hours to transfuse a 100 ml dose of Obinutuzumab. Same again on day 2 , about 8 hours this time for the 900 ml.
I don’t know if the nurses would have that much patience for a first case?
Forewarned is forearmed.
Wishing you the best,
Rita
Nurses look for the general signs of an infusion reaction and know what to do when they see the signs. 
Thanks - I’ll keep my fingers crossed!Cx
Yes, the reaction is not specific to obinutuzumab, it's because you are infusing a large molecule into your body. IVIG is the classic example of a large molecule infusion that can cause reactions. So while a nurse may not be experienced with that particular drug, they will likely be experienced in dealing with infusion reactions overall.
I had a severe reaction and pushed the call button. There was several people watching me and the infusion was stopped immediately and I was hospitalized to restart more with increased meds to help. Its much slower but I have not had a bad reaction with the rest of my infusions. I have scheduled Cycle six at the end of the month. I am diong well on the Venetoclax week two with few side effects.
Thank you for sharing that and I have now read your previous post.
Must have been really scarey !!
Glad you are doing well on Venetoclax and please do keep posting and let us know how you go and when you are minimal residue disease / in remission.
Take great care and wishing you the best,
Rita
There are only about 20,000 new cases in a year in the whole US. So each doctor is not likely to come across 1000's in their practice.
Gosh , I didn’t realise it’s that low !!
RitaBa, V & O were only approved for use together on previously untreated CLL patients by the FDA in 2019. This is new stuff! I think that in your doctor's case experience with 55 patients is good. Seems like not much, but definitely not insignificant. In my case, I'm getting my O+V as part of a clinical trial where they are trying to prove that using O+V+Ibruitinib is better than only using I+O. All the best.
BTW Jupiter,
My liver levels went through the roof too on the day after I received my first Obinutuzumab.. This morning they were much better and I was allowed to go home. They haven’t seen much of that at my hospital but they were confident it was drug related.
So did mine after the first 100cc of O. I had also had my first I that same day. My hematologist-oncologist had never seen that happen so he suspended the second infusion of 900c that was supposed to happen the following day, so he could study the situation and consult with the doctors running the clinical trial. They finally all concluded that the liver went crazy due to the I, not the O. So the next day -day 3- I got the 900cc of O with no side effect. The I was stopped for a few weeks until my liver markers slowly got back to normal. Eventually I was put back on I, but increasing the dose slowly, while constantly monitoring my blood (3 tests a week). I never had another reaction to the O. I got all 1000cc infusions indicated in the trial, no problem.
BTW, my trial is A041702 (allianceforclinicaltrialsin... and/or clinicaltrials.gov/ct2/show... if you want to check it out.
I have forgotten to mention that after the first few O infusions I felt quite tired and lacking energy the rest of the day. After the fourth or fifth time, it didn't bother me anymore.
Actually the first time I posted on HU was to ask if anyone had had a similar liver reaction to I or O. Only one person replied that they had, but in his case it was attributed to O, not I. Let's see how people react to this liver reaction of yours.
As before, all the best!
Jupiter it gives an error message on the trial link you provided. Please would you check it again. Thanks
Actually I had given you to different links to the same trail Here they are again:
allianceforclinicaltrialsin...
and
clinicaltrials.gov/ct2/show...
Hope they work now.
Did you talk to your doctor about the vision problem? In any event, the Mayo Clinic list of Venetoclax common side effects includes "blurred vision" (mayoclinic.org/drugs-supple.... But you should talk to him/her about this problem.
Take care!
My liver function tests also went up the day after first dose of obinutuzumab (eg ALT 145, AST 125). After a couple of weeks they have come down, but still not quite normal (ALT 40, AST 30). Mind you some of them were a little high even before I started treatment.
That makes me feel a tiny bit less worried. Thanks 🙏
I suppose you saw my reply to RiaBa about effects on my liver after starting O. It took almost a month for my liver return to normal. So I guess you need to be a little patient. Good luck!
Thanks Lupiter, and yes I saw your reply. I’m not too worried because the numbers are definitely on the way down 😊.
Husband beginning V+O treatment for unmutated CLL
Working while on treatment O&V
