Australia

[222husky]

Is there any people in this group on south Australia

[AussieNeil Partner Administrator]

There undoubtedly are - over 70 of our active members are from Australia. Was there something in particular regarding CLL support in South Australia that you were wanting to know about? If so, you are likely to get more helpful responses if you are more specific in both your post title and in your post query and make your post private to this community. You can edit your post by selecting the 'v' under it and then selecting 'Edit'.

Neil

[roszika in reply to AussieNeil]

Hi I am from Victoria, Melbourne to be exact if that's any help. Diagnosed 6 and a half years back, have been on w and w but soon to go on chemo tablets as white cells have shot right up

[brad8]

Hi 222husky Im a CLL diagnosed 5years ago I am still on W&W age 71.Im a South Australian

[222husky in reply to brad8]

Thanks Brad. Only reason I asked is because I wasn't sure if we have the experts in cll here in SA. All the info seemed to be coming from US or UK. My Dr was not agreeing with me that hives happens to CLL sufferers and yet I had so many anwsers from other countries that said it was. Still got a lot to learn as to what I have to look forward to or not. I am 63 and when I was diagnosed I had just had to put my mother in a home for dementia and packup and sold their home. Lot of emotional stress. I'd hoped that I could get my lymphocyte count down since that has all been over and done with but it continues to rise and now I'm getting hives all the time.

[AussieNeil Partner Administrator in reply to 222husky]

The Australian Leukaemia Foundation funds worthwhile CLL research, including some in South Australia. Flinders University has a good reputation in CLL research. I also know of at least one haematologist in the South Australian public hospital system who has been funded to attend ASH in the USA. We have some MD Anderson trained CLL specialists, notably Dr Constantine Tam in Melbourne. Dr Michael Keating who was behind FCR development hails from Melbourne. The German CLL8 study included Australian patients in this large international trial of FCR.

Finally, let's not forget that the very effective new non-chemo CLL drug Venetoclax came out of Australian research in Melbourne, with seed funding from our Leukaemia Foundation.

You need to bear in mind that the USA has about 15 times Australia's population and a private health system that encourages research along with a very strong national drive to market achievements. Australia's research is more public sector based, where marketing capability doesn't get the same focus. While we do become involved in international trials, more needs to be done in this area although getting sufficient candidates can be challenging due to our lower population and vast distances.

The different way our health systems are set up also makes it challenging for our clinicians to gain experience with new CLL drugs, given our Federal Government's reluctance to fund new, very expensive drugs on the PBS and our private health insurance system not paying for treatment unless given while in hospital.

Australian medical researchers are highly regarded internationally.

Neil

[222husky in reply to AussieNeil]

Thankyou Neil for all that info. I understand better.

[AussieNeil Partner Administrator]

Did you catch up with this event?

Or the contact details for the support coordinator for the South Australian branch of the Leukaemia Foundation? healthunlocked.com/cllsuppo...