What’s the next step. : Hi folks Bloods have... - CLL Support

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What’s the next step.

Billys60 profile image
4 Replies

Hi folks

Bloods have doubled over past few months and was Tod yesterday I’ve relapsed. I’m 8 years post FCR and now being prepped to commence one of three options in the next few weeks after ct scan etc. Options are 1/ Venetoclax. 2 years 2/ Ibrutinib indefinitely. Or 3 Acalabrutinib indefinitely. I’m sure these are correct. Mind is swimming at the minute. Does anyone have any experience or advice.

Billy.

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Billys60
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GMa27 profile image
GMa27

8 years is great. I am 3 years post FCR. What are ur markers?

Get second opinion. Venetoclax has been a great drug. I personally would not want Ibrutinib due to Afib issue & fact you take it till it stops working. Acalabrutinib has less side effects. Everyone is different so it's a big decision. 🙏💕

cajunjeff profile image
cajunjeff

I would pick acalabrutinib over the other two, keeping in mind I am no expert.

With Cll we often cobble treatments together. Since Cll drugs are evolving and getting better each day, I lean towards kicking the can down the road with the drug that does the least harm. I would pick acalabrutinib over ibrutinib, so the real choice for me would be between venetoclax and ibrutinib.

Venetoclax is a great Cll drug and in my view, a more powerful drug than acalabrutinib. And it can be a limited duration therapy. So why then acalabrutinib?

Number one is we have a lot of data about how drugs like acalabrutinib can sequence to venetoclax when they fail, but less data about whether going from venetoclax to a btk drug like acalabrutinib works as well.

Venetoclax can be much more neutrophil depleting than acalabrutinib since it is so powerful.

So I like the idea of going with an easy, do the least harm drug like acalabrutinib and keeping venetoclax in my back pocket. I am on acalabrutinib right now with almost zero side effects and am considering adding venetoclax.

By kicking the can down the road with drugs that do the least harm, we will be in better shape when the time for our next treatment comes.

All that said, it’s a close call. I wouldn’t argue much with anyone who picked venetoclax. I do think most Cll doctors these days would choose acalabrutinib over ibrutinib. A very recent study seems to confirm acalabrutinib works just as well with less side effects.

lankisterguy profile image
lankisterguyVolunteer

HI Billys60,-

Your question has been asked many times, and you may want to view the replies to this posting from 5 days ago: healthunlocked.com/cllsuppo...

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Also, some of the previous postings can be found on this page in the box labeled:

Related Posts

*After Ibrutinib, what’s next? healthunlocked.com/cllsuppo...

*Next Step after BR infusions healthunlocked.com/cllsuppo...

*Off IB for >3 months & ALC began to increase, wonder what’s next 🤔 healthunlocked.com/cllsuppo...

*What’s the magic drug to get rid of humongous lymph nodes? healthunlocked.com/cllsuppo...

*Failed FR Ibrutinib next healthunlocked.com/cllsuppo...

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And please note that when you click on any other posting, the contents of the box labeled "Related Posts" will probably change to match the words in the title of the page.

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Len

bennevisplace profile image
bennevisplace

Hi Billy, I read your blog at Macmillan, from which I guess you wouldn't want to repeat FCR, an option mentioned by one of the blood cancer charities (sorry I forget which).

I believe Ven plus Ritux is another time-limited option.

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