CLL Scared!

[Commercial1]

Hi my partner is to start treatment for his CLL and has been given three options, chlorambucil+obinutuzumab, ACP196 alone or ACP196+obinutuzumab, any info on these treatments? Thanx xx

[Cllcanada Top Poster CURE Hero]

Gazyva (obinutuzumab) and chlorambucil is an approved treatment in some places the other two are likely clinical trials. It might help to know your city...

Does your partner want to enter a clinical trial? That would be my first question...

~chris

[Commercial1 in reply to Cllcanada]

Hi he saw his doctor at the hospital yesterday and he said he was ideal for the ACP-196 trial. Looked online and the results look very good, these results were in America and Canada. We live in England.

[babswade in reply to Commercial1]

My husband is now on his second year of the ACP-196 trial with Kings College, London. In his case it was the best thing that could have happened as he was not responding to other treatment. He is now very well. It is a lot of visits in the first few months for tests and follow-ups but then it goes down to monthly visits and we are now on 3-monthly visits.

Good luck for the trial.

[ Babswade says 'If you need to hear from other people on this trial, reply to this post:' healthunlocked.com/cllsuppo...

Admin ]

[MrMidnight]

Hello... You need to tell us whether your partner is 17p deleted or not. I am and I was treated with Gazyva (obinutuzumab) and chlorambucil for six months last year and only had a limited response (It didn't entirely clear my blood lymphocyte count and my lymph nodes reduced by only 20 per cent, which the haematologist described as "suboptimal"). As soon as the treatment ended, they started swelling again.

For those without 17p deletion, it works much better, apparently.

I've heard good things about ACP196 but I have no idea if Gazyva helps or not. (Does your partner have heart problems? Gazyva infusions can exacerbate them.) I guess it's a trial, which means you should look up any evidence and see how it's been going. Good luck...

[Arcionquad]

ACP196 and obinutuzumab are good meds. What a great opportunity.

[IsabelleAndJohn]

On the ACP-196 Trial, the patient does not get to pick or choose which drug(s) they will receive, the picking/choice/decision is made randomly by a computer, with the option of being switched to a different arm of the trial during treatment if the patient does not respond well to what had been allocated by the computer.... At least that is what is printed on the ACP-196 Trial paperwork we were given, in January, at Bournemouth Hospital, in Dorset, UK... Wishing your partner the best of luck...