Venetoclax

[MartiP2009]

Yesterday I saw my oncologist my blood work is out of wack I’ve been on Imbruvica for 4 yrs this month, he ordered a CT scan and researching switching me to Venetoclax, can someone give me their experience with this drug, is it as expensive as Imbruvica? Thank you

[lankisterguy]

Hi MartiP,

I am on Venetoclax since June 2016 having failed Ibrutinib and Idelalisib. It works great and I have been in Complete Remission and MRD negative (no detectable CLL cells in my blood or bone marrow) for most of that time.

I see Dr. Furman at Weill Cornell NY Presbyterian- just across the street from MSKCC.

There is a CLL Society patient support group meeting on Sunday April 22 in New York City and I believe there are 5 patients taking Venetoclax in the group. I think we can answer many of your questions.

cllsociety.org/event/new-yo...

Sunday April 22nd and Sunday May 20th.

The meetings will be held, as usual, from 3pm-5pm at:

The Myra Mahon Patient Resource Center & Library

1305 York Avenue

2nd Floor

New York, NY 10021

(South West corner of 70th St. & York Ave; the modern, glass office building).

Please RSVP if you will attend.

Just a reminder that our support group this month will meet on April 22nd and our May meeting will be on May 20th. Dr. Furman is confirmed to join us on May 20th for the second half of our extended gathering: our regular group process 3-4:15 and then Dr. Furman will join us for discussion and Q & A from 4:30-5:30ish.

Len

[MartiP2009 in reply to lankisterguy]

I’m in southwest Florida so not able to participate, thanks for the info

[lankisterguy in reply to MartiP2009]

I'm sorry, I saw in a previous post that you went to MSKCC, so I assumed you were local.

I believe there are several doctors in Florida familiar with Venetoclax

youtu.be/dKYIBmi5CH8(Not working as expected?)

onclive.com/insights-archiv...

Len

[Hoffy]

Venetoclax is very good and strong with out as much side effects. It is just as expensive as Imbruvica though,

Be well,

Hoffy

[Gokdilocks]

I was one of the 25% with heart issues from Imbruvica. It had my labs on a roller coaster. Never felt well. It’s goal is control which it failed with me after 3 years. Venetoclax has been a miracle. Three months from raging out of control to partial remission and checking for deep remission next month. I began last October. It is my miracle. Hope it is yours too.

[MartiP2009]

Thank you Goldilocks

[lawyermordy]

I was initially on Ibrutinnib but couldn’t tolerate the side effects and switched to Venetoclax. I have been on Venetoclax for a over a year and my bone marrow and blood shows no CLL cells. Great drug with less side effects. Hope you have the same result. Good luck

[MartiP2009]

Thank you lawyermordy, I go for the ct scan on the 2nd and doctor on the 10th, praying all is well.

[Lola69]

Hi! My friend is on ventoklexa. It’s a clinical trial and free for him .. was not aware was already out on the market.