Untreated Aussies needing treatment - great clinical trial just for you

I just saw Con Tam at the Peter Mac in Melbourne today - I asked him when he thinks the trial of ibrutinib plus Venetoclax will open here for CLL patients (it's open for MCL and they're all doing well) and he said it's opening for treatment naieve in 3 months. Anyone approaching treatment here really should get a referral to him - I'm thinking of the likes of you Aussie Neil!!! This is a great combo and I wish I'd been able to access it. Meanwhile I'm on cycle 11 of my Venetoclax plus obinutuzimab trial and still commuting to London. My bloods all great and MRD 2 months ago was 0.01 percent (it was 81 percent at my sickest). Next BMB sept after a trip to Oslo to speak at a conference at the Oslo Cancer Hub (how lucky am I?). Con says he thinks I'll get to MRD negative and if I do choose to come off the drugs at that point I should be able to expect at least a 2 year remission. I'm now back at work full time and loving having my life back.

Best wishes to everyone here

Deb

____________________

dx Dec 2011 at 38, SLL Stage IV, del 6q, unmutated, rapidly progressed to CLL Stage 3. Three rounds of FCR Jan 2013 -MRD+ remission, relapsed Jan 2015 - clinical trial of ABT-199 plus Obinutuzimab started Nov 2015 - blog: abtandme.com

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  • Great to hear you're doing well, I read every word of your story and laughed and cried all the way with you! You really are an inspiration to all of us who live unsure and anxious ..

    Thank you for sharing your life and being so open and also extremely educational.

    Is this trial for relapsed patients or for those needing treatment for the first time?

    I tried getting an appointment for second opinion with Dr. Tan but struggled so got one with Dr Kylie Mason at Royal Melbourne. Has anyone heard of her?

    My husband is untreated and we find out the results of his FISH test end of August as he's having symptoms like extreme fatigue, lymph pain under his arms and rising white cells counts. Cll diagnosis 4yrs ago

    Feeling super nervous especially after reading how hard it is for aussies to access newer drugs.

    Like everyone I just want him to get the best treatment for him and not miss out on the newer agents.

    Thank you for this invaluable piece of information

    Keep updating us!

    Fofow

  • Sorry I should have said it's for untreated patients so would be perfect for your husband! You can see Con Tam privately at St Vincent's - I think my out of pocket was in the region of $100 and I find consults with him invaluable. I would highly recommend seeing him as he is more across what trials are here/coming than anyone else - my Dr at the Royal Melbourne is David Ritchie and I think he's fantastic too. Thanks for your kind words, Deb

  • Hi Deb

    Lovely to hear from you, I think a number of us have been wondering how you are.

    I think of you as CLL's commuter extrodinaire.

    MRD 0.01%...wow. Be fantastic to hear MRD totally a big fat zero, you deserve it..

    Enjoy Oslo.

    Best wishes

    Bubnjay1

  • Bravo Deb! It's wonderful to hear how well you are responding to this treatment.

    It's wonderful to hear how you are living life too.

    You have been to hell and back. Enjoy!

    Jeff

  • Great to hear your very encouraging news. Thanks for updating us.

  • Here's a 'Heralding' piece which for the sake of fellow Australians I hope turns out to be right: Cancer drug that ‘melts’ away’ cells in Melbourne trials approved for use in US

    'The development of venetoclax is based on a 1988 discovery by Walter and Eliza Hall Institute of Medical Research scientists, who found that the BCL-2 protein was key to cancer cell survival. The drug overrides this mechanism.

    Professor Andrew Roberts, a clinical haematologist and WEHI’s head of clinical translation, said the first-in-human clinical trial conducted in Melbourne saw a positive response to the drug in almost 80 per cent of the 116 participants.

    “Most of the patients had failed to be controlled by all the other treatments we had available. This was a last line option for them,” Prof Roberts said.'

    heraldsun.com.au/news/victo...

    Neil

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