Are there an Aussies on here who have had access to Venetoclax ?

[lymphomaoz]

Australia is about to announce the approval of Venetoclax for relapsed / refractory CLL/SLL. Just wondering if anyone on this page has had access either via a clinical trial or compassionate access and would like to help us share the good news. Thank you Sharon from Lymphoma Australia

[closh]

Fantastic news Sharon. I'm in Australia and have taken Venetoclax on a clinical trial in combination with Ibrutinib. Venetoclax slaughtered my CLL cells (including in my bone marrow) with no real side effects. This will be a great option for many!

Graham

[MsLockYourPosts Passed Volunteer]

Deb Simms has been so involved in making this happen. I'm happy for all of you there, and that Deb can see this happen! Debinoz DebinOzinLondon

[closh in reply to MsLockYourPosts]

When I first had a consultation with Dr Tam I said I'd been in touch with another of his patients, Deb Sims, on the CLL Forum. He just chuckled and said "Deb is unstoppable".

Graham

[MsLockYourPosts Passed Volunteer in reply to closh]

Very true!

[csellies]

I am certainly looking forward to it, let's keep each other in touch of developments. Imbrutinib is great but with Venetovlax a real chance for remission.

[tozer]

I'm in sydney and on the ibrutinib and venetoclax trial for 2 years and whilst not yet at mrd I'm feeling good with plenty of energy and minimal side effects.

It's certainly worked for me though with a tp53 mutation it may not be a cure

Keep pressing on

[MsLockYourPosts Passed Volunteer in reply to tozer]

Is this trial still recruiting?

[tozer]

I don't think so

[csellies]

Hi guys, Venetoclax is now available on the PBS since beginning of March in Australia, consult with your specialist to determine your eligibility. Good luck to all!

[Debinoz]

Just caught up on the mention of me in this thread - thanks all - yes was thrilled to be with Sharon from Lymphoma Australia at the Press Conference and yesterday the government announced funding for CAR-T at the Peter Mac in Melbourne - it’s all happening - so excited for everyone who will he helped by this. It’s now 4 years since I tried to access Venetoclax in Australia and had to move to the UK to enter my clinical trial. That closed last year and I was granted access to the drug here - I’m still on 400mgs a day monotherapy with no side effects and am in complete remission with 2 monthly bloods and back under the care of Con Tam - I’m working full time and my kids are now 14, 12 and 9 and I’m 7 and a half years post diagnosis (at which I was told I would probably have 5 years). Life is good! Keep the faith. I’ll update the blog but for those who haven’t seen it it’s abtandme.com. Good health to you all!

Cheers

Deb

[Justasheet1 in reply to Debinoz]

Deb,

You’ve come so far and have paid it forward for us as well. For people that don’t know your story, you’re just an amazingly strong woman. What you’ve been through and where you are now is astonishing.

I’m looking forward to viewing all your interviews again at next years ASH meeting.

Jeff

[Debinoz in reply to Justasheet1]

Aw thanks Jeff! Have had my days but have a wonderful support network around me and these forums have been invaluable - there is so much reason to be hopeful now (and there was none of this when I was diagnosed almost 8 years ago) - hope those newly diagnosed with aggressive markers can take a lot of comfort in this x