new treatments

[sept149]

hi I am looking to do the OandV treatment. However I have read about some new approved cll drugs that may be better it’s a bit confusing to me and of course I want to take my best shot. Any advice would be appreciated. I’ve got so much help from this forum. Thanks to all

[Pacificview]

Hi,I chose the O and V because it has had good results. Its time limited which has many benefits. Such as avoiding resistance. Being off treatment for years possibly. I think 60 plus percent after 5 years still are still not progressing. So the double therapy works about as well as current tripplets with less side effects.

Its a pretty easy regimen in my experience. You can read my Bio. I have had 5 infusions and just ramped up yesterday to full 400mg V.

Bloods all look really good, nothing crashing.

I did not want the toxicity of taking a drug indefinetly if I did not have to. So this is a fit more me. First two months are lots of Dr. visits, labs etc. But then the schedule free's up.

All the best in your hunt.

John

[craterlake]

hi sept149 . what the treatments that are better ??? . thanks james

[sept149 in reply to craterlake]

thanks

[DinosaurDad]

I also am receiving V&O, it's gone extremely well and I'm at what's called "undetectable minimal residual disease" after only 7 months. The ramp-up takes some time because they have to monitor you carefully, and the O is done via infusion, so you have a lot of office visits (I live outside New York City here in the US, so I made a lot of trips to Sloan Kettering via our commuter trains). So you do need to consider the logistics. But once through that, it's justs pills you take at home.

As far as other options...ultimately it's crucial to find a CLL expert doctor who can guide you. For research, there's a lot of info on the web via (for example) the CLL Society, Patient Power, the Leukemia Research Foundation. Here's just one recent presentation as an example.

youtube.com/watch?v=IjEQtU4...(Not working as expected?)

[sept149 in reply to DinosaurDad]

thanks so much

[biplane]

I'm at cycle 10 of O&V and will be 71 in a few months. My comments would mirror Pacificview and DianosaurDad so I guess another vote for O&V but I don't know what else you are considering. Jerry

[jacjar1 in reply to biplane]

same here been a great treatment for me and my CLL. but not all CLL is the same person to person.

[sept149 in reply to jacjar1]

thanks

[spi3]

My husband is in a study at Dana Farber and is on O&V (and acalabrutinib) and doing remarkable (he started last March 2022)- he is in remission and will take A&V till Dec to ensure there is no CLL at a molecular level and to be in a very deep remission for a long time

[sept149 in reply to spi3]

thank you so much

[Big_Dee]

Hello sept149

I have had Bendimustine + Rituxin (chemo) and now on V&O. I have been on V&O for 9 months and can say that for me B+R was a little easier than V&O in terms of side effects. I have diarrhea and nausea about once a week with V&O, but it is working so well that I will stick with it, minor problem. Blessings.

[BigHT]

just finished my OnV treatment , worked perfectly !

[sept149 in reply to BigHT]

oh thanks so much for responding. That’s encouraging

[Skyshark]

1: The treatment of CLL depends very much on your genetic markers. There is no one best therapy.

TP53, IGHV and patient fitness are the key indicators for choice of therapy. O and V is a current recommendation for all of the indicators except TP53.

nature.com/articles/s41408-...

2: It also depends on what is approved or available in your country.

3: There may be therapies that have shown great promise in trials (for your set of markers) but are not yet approved or only available "off label".

4: You may want to ask about phase III trials.

[sept149 in reply to Skyshark]

thanks

[81ue in reply to Skyshark]

That's interesting that O & V is not recommended for TP 53 deleted, as I had R & V (my limited understanding was that 'O' was the latest and better class treatment than 'R'). I was TP 53 & IGHV mutated, and couldn't do fludarabine, then went on imbruvica monotherapy and then when that failed and tumor load was debulked, went on R plus V and currently I'm off medications to see how long remission lasts. Thank you for the article link.

[SofiaDeo in reply to 81ue]

As of *2022*, V&O is not recommended as *first line* in *previously untreated* only. In 2021 this recommendation wasn't out. And the ASH data involving V&I of earlier this year may modify the 2023 recommendations.

[Skyshark in reply to SofiaDeo]

The recommended treatments are changing rapidly as results from clinical trials feed though. In 2018 there was a very different list of treatments. Iibrutinib mono-therapy or FCR/BR and obinutuzumab (with or without chlorambucil) feature strongly.

[sept149 in reply to Skyshark]

thanks