Untreated Aussies needing treatment - great cl... - CLL Support

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Untreated Aussies needing treatment - great clinical trial just for you

Debinoz profile image
16 Replies

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



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

16 Replies
Fofow profile image

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!


Debinoz profile image
Debinoz in reply to 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

Ge77y profile image
Ge77y in reply to Debinoz

I have also managed a consult with Con Tam and he is incredibly knowledgeable. My appointment came about as my daughter was his patient for Hodgkin Lymphoma (remission now for 7 years). When I was diagnosed 5 years ago she rang him so distressed that he gave me an appointment. I live in Wollongong nsw so had to fly down for it. He was wonderful and explained my results, calmed my daughter and took lots of my blood to look for linkages in our cancers. (there weren’t any). I agreed at the time for my blood to be used by any researchers and as a result if my CLL requires treatment in the future I will have access to clinical trials. Then I discovered my Wollongong haematologist trained at the same uni in the states as him and knew him well. And Kim Cartwright is also a wonderful specialist and up to date with research and treatment. There are some truly amazing people in this field of medicine. We are extremely blessed there are so many good ones.

Bubnojay profile image

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


Justasheet1 profile image

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!


Calopteryx profile image

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

AussieNeil profile image

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.'



catnapcrew profile image

does anyone have an update on this. I heard about this through this site and contacted peter mac and sent my results, John Seymour replied and said I sounded like a suitable candidate, I have 17p, age 49 and otherwise healthy, no prior treatments. He put me onto his PA whom I made contact with, she said I would need to send a doc referral and come to the hospital for appt, I asked for trial details but haven't been able to get hold of any to date - she said there was some admin issue. In the meantime I asked my haemo (who says I am weeks away from treatment and he will give me fcr first up and then ibrutinib once that fails - (he agrees the fcr won't work for me but his hands are tied as this is std aust treatment regardless of fish results)) to contact the hospital about this and he has come back and said that there is nothing in the whole of Australia for me in trials, he showed me two, one of which I needed prior treatment and one for over 65's, (and one of those included FCR which I said I didn't want due to the 17p - otherwise I would give it a shot). So I have emailed peter mac again, but in the meantime does anyone know if this trial is going ahead and if it's for patients NOT previously treated. if so then it would be worth my while getting on a plane and trying for an appt. I'm actually living in Qld but can move if necessary. John Seymour said to try P Alexandra Hos in Brissie for Qld trials but they will only give the info to my haemo and once again he says there is nothing going there.

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Might try a database search


catnapcrew profile image
catnapcrew in reply to Cllcanada

Thanks for this. I've actually checked this several times and I subscribe along with a few other sites so unless I'm doing something wrong. ....

Mike113 profile image


I have a friend in Adelaide who is under the care or Con Tam partaking in the trial of BGB 311 plus obinatuzamab for previous untreated and is doing great. Trials are still recruiting as far as I'm aware but in Vic. If not this one further phase II about to start also. Fly in fly out. It's what we will consider when the time to treat comes, we're from Qld too. I sugguest contacting the Peter Mac again and seeing about more options. Best wishes.

catnapcrew profile image
catnapcrew in reply to Mike113

Many thanks. I guess we will find out about this soon as (yeah) after more than 4 weeks of chasing up his haematologist for the info, Peter Mac told me to send what results I had which was enough for them to say "yes based on this info he sounds suitable" and then we just had to keep chasing up the referral which is now down at P Mac. Persistence won out. In the meantime as a backup plan B we got an apt with a different haematologist to see what he has to say - that's Friday. have heard he is good at supplying answers and giving you your optons, something we just haven't been getting.

Debinoz profile image
Debinoz in reply to catnapcrew

I've mainly seen him in his private rooms at St Vincent's - you can google for more details but it's worth the out of pocket and you can get an appointment almost immediately - especially important given you need treatment soon. Keep us in the loop - good luck. Deborah

catnapcrew profile image
catnapcrew in reply to Debinoz

Thanks for that. Theyve been brilliant from the melbourne end it was his doc here causing the delays. All sorted just waiting to hear appt time. once again thanks for bringing to our attention as they arent advertising.

Debinoz profile image

I know someone who is on ibrutinib/venetoclax at the Peter Mac for untreated and starts tomorrow under Con Tam after my recommendation of him. If you need treatment I highly recommend you see him - it takes a while to get into trials and places of these good ones fill fast in Australia. I'm still commuting to London every 3 months for my phase 1b trial of venetoclax and obunutuzjmab for relapsed and refractory (now cycle 13 and still on 400mgs of ven a day with no side effects) and just found out I'm MRD negative in my bone marrow so the horrendous upheaval has been more than worth it.

Good luck.


catnapcrew profile image
catnapcrew in reply to Debinoz

We first heard of this trial through one of your posts so thankyou. We asked my husbands haemo about it but he never provided a scrap of info in over a month of persistence and only offered FCR, which is why we have been chasing and trying to clarify ourselves before forking out for the airfare, accom etc to go to the face to face in Melbourne. It's finally coming together as of today. And thankyou for your blog as it's very informative and gives insight as to the sort of things he can expect. Many thanks and merry Christmas.

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