Venetoclax: Shaking CLL Off the Tree

[zaax]

The spectacular early observations on the use of venetoclax appear destined to ensure that CLL will itself now inevitably fall from the tangled branches of burdensome lymphoproliferative diseases.

hematology.org/Thehematolog...

[Justasheet1]

Thank you for that post Zaax

[fell]

Great post 👍🏻

[Spacee]

My new love! Venetoclax!! My hubby has 17p- and p53. And Ventoclax may well be the cure when given either after something that didn’t work. Or with something that helps. Too.

Hey, I have an idea. Let’s us all rename those crazy drugs that have the unpronounceable names! I bet the Oncologists will thank us!!

Thanks xanax!!

Linfa

[JR1964 in reply to Spacee]

Amen to renaming. Drives me bonkers. STAY STRONG J.R.

[pkpayne in reply to JR1964]

My doctor even said he didn't know why all the drugs had to have at least 5 syllables!

[Cllcanada Top Poster CURE Hero in reply to Spacee]

Drugs have two names, a trade name like Rituxan and a generic name rituximab... in this case it has a second trade name MabThera.

Generic drug names are made up of suffixes , roots and prefixes and actually tell a great deal about what type of drug it is...

There is actually a method to the madness ... leaner this list and know more than your doctor! 😆

druginfo.nlm.nih.gov/drugpo...

en.m.wikipedia.org/wiki/Dru...

[Spacee in reply to Cllcanada]

I had thought of flash cards a while ago. I think I will still make them for me and hubby. A game to play!

Thank you!!

Linda

[MsLockYourPosts Passed Volunteer in reply to Spacee]

Linda - I picture you with cards with drug names and cards done by syllables, with the meaning of each syllable on the back of the card. Then you can just pull out the correct syllables for whichever drug you are thinking about, flip the cards, and figure out how the drug got it's name.

[MsLockYourPosts Passed Volunteer in reply to Spacee]

I had to laugh, when in discussions about being treated with Gazyva, aka obinituzumab, that my doctor, who had been involved in the early studies, still called it GA 101. She would agree about dealing with all of the name changes.

Just when you've learned the trial name, drugs get their generic name, and when you've learned to spell and pronounce that, the trade name kicks in. Dr. Sharman commented on the renaming of CAL 101 to Idelalisib, but then broke it down by syllables to explain where the name came from.

I'll have to check out Chris's links, though with so many new drugs in trials, I've given up trying to stay on top of all of this. I scan through now and don't try to learn it all. If I'm ever back in treatment discussions I'll get more serious about learning more about the make up of any drugs being discussed. Everything had changed completely between my first treatment and second one 10 years later. I suspect that the same will be true again.

[Jm954 Administrator]

Thanks for posting zaax

[CLLCalifornia-USA]

Thanks Zaax. Always love reading new information. Sally

[cook4650]

I had to skim through all the scientific jargon of course, but it sounds like this would be the next option for me if I should fail ibrutinib. I am 17p deleted, and was treatment naive before beginning ibrutinib 2 years ago. So there is more hope to come for many of us! Great news!

[Newdawn Administrator]

Having just heard Professor Hillmen speak at the CLLSA Conference in Leeds, I think you may have a point zaax.

Next issue is the approval and economic one in the UK.

Newdawn

[Cllcanada Top Poster CURE Hero in reply to Newdawn]

Love conferences... how exciting!

But at $7,600 a month, venetoclax won't be funded in Canada any time soon... 😋

~chris

[newyork8 in reply to Cllcanada]

Cheaper than Ibrutinib and Gazyva in the US. They are each about $12k per month.

[Cllcanada Top Poster CURE Hero in reply to newyork8]

Don't know where you are getting your prices, but its nowhere near the cost insurance companies pay... all cost are negotiate down...

Gazyva is dosed by body mass, and it is about 15% more than rituxan... and dosing may be higher per round.

Obinutuzumab costs $5,275.50 per 1,000mg vial.

Rituxan costs $2,265.50 for a 500 mg vial

These are non negotiated costs in Canada about! 3 years ago...

cadth.ca/sites/default/file...

[newyork8 in reply to Cllcanada]

I think Gazyva is 1000mg month no matter your weight. 100 test dose then 900. Heavier dose 1st month then 1000 month.

[ladyprescott in reply to newyork8]

I have had one heck of a week getting my Ibrutinib prescription taken care of . First my Part D provider gave wrong information, then had me get my doctor to send prescription to CVS pharmacy which was wrong. Finally today found out there are only two drug makers of this drug in the US. At almost 5:00 pm I'm on the phone with one of the two that make this drug giving them information. This has been going on since Monday. It is true that Ibrutinib does cost $12,000 plus per month. Without Part D and a grant, I'd be in trouble.

[newyork8 in reply to ladyprescott]

Yes ...crazy expensive particularly as it does not end

[ladyprescott in reply to newyork8]

Hoping as we go, something new will come along and if not a total cure, be something we can take for a short duration and if works can get off it. Take again if you need it. I see that in the future with all the advancement being made in the last few years.