Recommendations for CLL doctors in South Australia?

[brad7]

[AussieNeil Administrator]

Brad7,

I really can't give you much guidance. As you know, in Australia, if you opt for treatment in a public hospital, it is the luck of the draw regarding to which specialist you are assigned, but you may be able to influence that by asking your GP to direct you to the haematology department at a particular hospital. Flinders Medical Centre does seem have a good reputation and CLL specific research is undertaken there. The Adelaide public hospitals are also grouped, with haematologists visiting within that grouping, i.e Royal Adelaide, Lyell McEwin, Modbury and Queen Elizabeth in one group and Flinders, Repat and Noarlunga in the other.

It also seems to depend on your stage; I've been seeing the same haematologist for 5 years after being diagnosed at stage IV, whereas another CLL patient I know with an early stage diagnosis just goes to the Royal Adelaide Hospital and sees whoever is available at the time of his appoinment.

Within the obvious limitations of Australia's social health care system (like extremely limited availability of prognostic testing and limited trial availability), I'd have to say that care here for CLL patients is to a good international standard provided you can arrange access to a haematologist experienced with CLL.

There are some private haematologists available locally if you can afford it and consider that avenue bests suits your situation, but I didn't see any listed for South Australia in the list of recommended CLL specialists maintained by the CLL ACOR site when I last checked. If you want to go that route, send me a Private Message and I can also tell you where I photograph the wetland birds.

Neil

[Cllcanada Top Poster CURE Hero]

If I was in Australia, I would go to Dr. C Tam in Melbourne for a second expert opinion...

His 4 part CLL video is excellent!!

m.youtube.com/watch?v=Pbc4q...(Not working as expected?)

[AussieNeil Administrator]

I've heard Dr Con Tam give a presentation to the Australian Leukaemia Foundation CLL Telephone Forum and I too would highly recommend him to any Australian CLL patients. He is involved in CLL research at the Peter Mac and that's the only way I know by which you can get more than very basic FISH testing done in Australia:

melbourneblood.com.au/about...

[DebinOzinLondon]

I've seen Dr Tam and he's excellent. He's also the most clued in for clinical trials in Australia, bringing ibrutinib here and is involved with ABT-199 too.

I'm currently getting a Notch1 test on a lymph node biopsy from a sample taken 2 years ago done at the Peter Mac. He also organised for me to have my IVGH mutation test done just after diagnosis which is when I discovered I was unmutated. This isn't ordinarily done in Australia and I wasn't charged for it. Tam has pioneered a high risk CLL unit at the Peter Mac and if, like me, you have poor prognostic markers it would be well worth being under his care.

[brad7]

Thanks AussieNeil Sounds good advice Im a Vietnam veteran with a gold card so I in most instances do not need to worry about expence. Im at presence seeing a hamatoigist in Calvery hospital north Adelaide. He has the first blood files so I see him in two weeks. I will take it from there. Brad7