Dana-Farber Clinical Trial for Non-pre-treated patients

[Lily_Pad_Master]

I had mentioned the trial I'm in using Acalabrutinib, Obinutuzumab, and Ventoclax. Here's the information from ClinicalTrials.gov.

clinicaltrials.gov/ct2/show...

[Murzik]

Thank you very much, I am considering it as the best current treatment available

[Lily_Pad_Master in reply to Murzik]

It looks like they're enrolling only 37. If it's the right time for you, I hope you can get in. Let me know if you do. We can support one another as we move through.

[bhayes84 in reply to Murzik]

My doctor just prescribed Alacalabrutinib for me today (off label) so it's possible to get it outside of a trial. I had tried Ibrutinib but it caused terrible blistering rashes even at just 140mg / day.

[aboylan in reply to bhayes84]

A friend of mine has been taking a reduced dose (140mg daily) Ibrutinib for two years and complains of fatigue, joint pain and rash/purple marks and has gone thru numerous skin biopsies resulting in three Mohrs procedures. Just wondering how Alacalabrutinib is working out for you?

[bhayes84 in reply to aboylan]

It was just prescribed for me today so we'll know in a month or two. My doctor was really shaking his head at the blistering rash I had. He said he'd never seen such a reaction. I've been off of IB for a month and the rashes are better but not gone.

The person with the CLL Society handle 'tryandtry' posted on here that Acala is working great for him - he had to stop IB due to Afib and some rashes.

The final posting on this page is by mgh348 who said it's been working great for him/her for 18 months:

healthunlocked.com/cllsuppo...

Your friend might want to talk to his doctor about trying Acalabrutinib. The manufacturer, AstraZeneca seems to be providing it at no or low cost for CLL patients. Maybe they're trying to bolster their case to the FDA for CLL approval.

Here's a link to the CLLS video interviewing Dr. Byrd about results from his Phase I/II study of Acala for relapsed/refractory IB patients. That page also has a link to the pdf of the results:

cllsociety.org/2018/06/ash-...

[aboylan in reply to bhayes84]

Thanks for sharing your journey. I hope Acalabrutinib works well for you. Keep posting.

Stay strong.

[Lily_Pad_Master in reply to aboylan]

Thank you, and will do.

[mkeisha in reply to bhayes84]

Hi how is Acalabrutinib working for you? And being off label does your insurance cover it? (I'm assuming you are in the U.S.) Thanks.

[Lily_Pad_Master in reply to mkeisha]

I had an off-and-on headache for the first week. Kept in close contact with my care team. It hasn't returned. All three drugs (plus prophylaxis against bacterial infection, shingles, and uric acid buildup) all covered by the trial.

[bhayes84 in reply to Lily_Pad_Master]

Unfortunately I've had headaches for the entire 2 months I've been taking Acalabrutinib. I keep hoping they'll finally go away.