Ibrutinib V Venetoclax + Rituximab : I had FCR... - CLL Support

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Ibrutinib V Venetoclax + Rituximab

pool8 profile image
15 Replies

I had FCR treatment for CLL about 6 years ago but a number of lymph nodes now getting lumpy. I am being offered either Ibrutinib or Venetoclax +Rituximab. My consultant favours the the latter (V+R) and I will probably go with his recommendation. Do any of you out there have any views or advice to give...I would be pleased to hear from you. Many thanks.

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pool8
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15 Replies
AussieNeil profile image
AussieNeilAdministrator

Did you see this post from yesterday?

healthunlocked.com/cllsuppo...

pool8 profile image
pool8 in reply to AussieNeil

Thank you for responding

Canuck901 profile image
Canuck901

Would yuh rather take a pill like Ibrutinib forever or do the latter and 12-24 months treatment and have a durable remission ?

Your consultant is probably correct.

There is also a new trial called Ultra V and another called ace 311 that is Acalabrutinib Venetoclax and obinituzimab that’s a good one too

pool8 profile image
pool8 in reply to Canuck901

Thank you for responding

lankisterguy profile image
lankisterguyVolunteer

In addition to the discussion suggested by AussieNeil , you may want to check on this one from 21 days ago: healthunlocked.com/cllsuppo...

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You may find that Ibrutinib is easy to start treatment, with minimal need to have blood draws and close medical support, but may require 3-5 years of treatment to reach U-MRD (Undetectable Minimal Residual Disease). Some people with heart problems like arrythmias may need to avoid Ibrutinib which can cause AFIB columbiasurgery.org/conditi....

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Venetoclax and Rituximab require much more hospital time, testing and close monitoring especiallyfor the first 5 weeks, - tough choices in areas that have poor control of COVID19, but you may reach U-MRD in 12 to 18 months.

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Also, please look for the box on this page labeled: Related Posts

*Ibrutinib or Venetoclax/Rituximab. Which would you choose?

*Ibrutinib / Venetoclax

*Ibrutinib Or Rituximab?

*Venetoclax to Ibrutinib

*Venetoclax/Rituximab Combo

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Len

pool8 profile image
pool8

Thank you for the detailed response

pool8 profile image
pool8

I’ve not done much reading about CLL for years. When I had my FCR treatment I seem to recollect that Ibrutinib was emerging as a miracle drug. It seems Venetoclax is the latest miracle drug and the currently preferred treatment. I’ll never understand all the technical jargon in some posts but I am happy I have read enough for now and I am looking forward to starting V+R treatment although I do not have a date as yet. FCR served me pretty well 6 years ago: I achieved a good partial remission and it was like getting my life back...energy restored! I’ve been going downhill for a while now ....poor energy levels and lumps progressing. Funny thing is I have always been told by haematology that my blood results are good! For example my wbc has never been much more than 40 and of late it has been falling! Last wbc only 20 ! Maybe I have the lowest wbc for a patient needing treatment lol. Thanks to all who responded and sorry my question was really already covered by others. Best wishes to all.

PlanetaryKim profile image
PlanetaryKim in reply to pool8

Good luck to you pool8. I think you made a good choice with V+R. I was switched to that 5 months ago after 2.5 years on ibrutinib because of worsening afib problems on ibrutinib. I am doing great on the venetoclax and not noticing any day to day side effects at this point, 5 months later. Hoping you have similar smooth sailing.

Canuck901 profile image
Canuck901 in reply to PlanetaryKim

Kim are you still considering the Rituximab or are you going to be on the monotherapy of Venetoclax?

PlanetaryKim profile image
PlanetaryKim in reply to Canuck901

I will be discussing with my specialist in a couple of weeks. But I am very much leaning toward mono-therapy. It's going so well for me, I hate to rock the boat. And I don't really want my neutrophils to tank out, which is possible if I add rituximab. And I think with my 2.5 years ibrutinib prior, i would have great outcome with V-mono. In a recent study, V-mono was as effective as V+R in heavily pretreated patients who had ibrutinib prior: ncbi.nlm.nih.gov/pmc/articl...

Our notion that V+R is superior to V-mono is based on Murano where the V-mono patients for most part had not been exposed to ibrutinib prior.

Canuck901 profile image
Canuck901 in reply to PlanetaryKim

Hi Kim

Makes sense

I think if your blood work is close to normal when you start the Venetoclax you should have a good remission .

The BTKs seem to be good at cleaning the CLL from the blood while the Venetoclax cleans the CLL from bone marrow

All the best and keep us posted on your progress

PlanetaryKim profile image
PlanetaryKim in reply to Canuck901

Will do!

Fran57 profile image
Fran57

Hello. Thanks for asking the question that you did. My husband had FCR ( 6 years ago next May) and has been very well, but his numbers are going towards time for treatment, according to his consultant. I will be very interested to see what you decide and how it all goes for you.

Thanks. Good luck, and stay safe,

Fran 😉(UK)

i'm on imbruvica,venclexta, and gazyva. i had 10 months of imbruvica,added venclexta, and then 4 months later added gazyva.

the specialist i saw at dana farber has now come into the 'in for a penny in for a pound camp'.

She thinks getting the best remission possible up front is the way to go. Sequencing -and the reasons for it-seem to be changing.

Canuck901 profile image
Canuck901 in reply to

That’s a good explainarion getting the best remission possible up front is the way to go.

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