Update 8 years, since I started the captivate trial, and doing well so far! UMRD. I plus V. Now just on Ibruvica for many years.

[Hoffy]

Hello,

I am pleased to post that it has been 8 years since I started the captivate trial, and it has gone very well so far. This is even more remarkable since I was/ am 17 P deleted with large lymph nodes a complex karyotype to start. Trisomy 12 as well to start.

I have to thank CLL Society for a great education to help me make the right decisions. I also have to thank Ucsd for great care. LLS as well.

Read more details here:

cllsociety.org/2023/12/upda...

thank you for your support as well.

Be well,

Hoffy

[Skyshark]

Other than side effects have you actually been told if you were the half that were randomised to placebo or Ibrutinib?

CAPTIVATE trial -uMRD4

[SofiaDeo in reply to Skyshark]

The site staff generally don't know who has the placebo. A site is sent the randomized packages labelled for each patient, and then just dispense them to the patients. That's the main point behind a placebo trial, no one knows who has the drug until the study is processing data/reporting results.

Even forIV meds. I remember one study testing phenobarbital in neonates, we were instructed to poke a needle in the plain IV/placebo bags ends similar to if we injected the drug, so the docs & nurses on the floor could not tell by looking if the IV contained the drug or not.

[Hoffy in reply to Skyshark]

When they ended the trial about a year ago they told me I was on imbruvica not a placebo.

I thought for a long time I was on a placebo because the side effects reduced after getting off Venetoclax but it turns out I was not.

the synergy of the two drugs seem to be very effective against CLL, but also generate more side effects. I was only on both for a year though.

Big side effect is weak fingertips and nails and some fatigue, but besides that pretty good.

Be well,

Hoffy

[Hoffy in reply to Skyshark]

They ended the trial about a year ago and told me I was on imbruvica and not a placebo.

Be well,

Hoffy

[cajunjeff]

Great news Hoffy! Glad to read you are doing so well.

[Thundercat2]

That's awesome news, thank you for sharing it! Long may it continue!

[Samm22]

That’s great to hear. I just recently have started a zanubrutinib and Venetoclax combo. I hope my results are like yours.

[Hoffy in reply to Samm22]

Great. I feel the combos are very good. Data backs them up too.

Hoffy

[spi3]

Congratulations

[MGirl-Aust]

Thanks for the detailed update Hoffy - great to hear you’re doing well. The CLL Society is indeed a fantastic resource 😀.

[skipro]

Congratulations!

Which meds or arm of the trial were you on!

Thx

Skipro

[Hoffy in reply to skipro]

I was on Imbruvica not the Placebo !

[Hoffy]

I should add I have been on a most vegan diet ( Although I cheat a fair amount with Fish).

Also I drink 3-4 cups of very good green ta a day.

I some some Turmeric pills and Vegan Omega-3 oils as well. Some D3 and B12 as well,

Be Well,

Hoffy