Having problems finding a CLL specialist. - CLL Support

CLL Support

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Having problems finding a CLL specialist.

2021Ichanged profile image
9 Replies

Hi all, I wonder if you can assist. I live nr Wollongong and to be totally honest I fear going to Wollongong Hospital for anything. It’s not that big a hospital and I dare say they don’t have too many CLL patients. I have sent a couple of referrals off to Westmead but am told I am out of area so they won’t see me. I wonder how do I get to see a specialist in Sydney and who? Maybe at RNS or Life House etc. I have thought about going to Peter Mac in Melbourne but if I get sick I won’t be able to get there.

Of late I am getting more and more persistent infections and I’m getting worried as my haematologist I have now refused to test me for anymore than the intial FISH I had done when diagnosed in 2021.

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2021Ichanged profile image
2021Ichanged
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cajunjeff profile image
cajunjeff

My doctor at MD Anderson in Houston was Dr Philip Thompson, an Aussie and I think a protege of my doctor before him, Dr Michael Keating. Dr Thompson recently left Houston to move his practice home to Australia.

I was very fond of Dr Thompson and was very disappointed for me that he was leaving. I was happy for him though, in that he was excited about returning home and raising his young family there. I remember telling him my prediction that he would eventually be a cll rock star doctor back in Australia with all the experience he gained at MD Anderson working with Dr Keating and others.

I think he told me he would be working at a hospital in Melbourne, Im not sure though. If you can find him and get in to see him, it would be a great choice. On top of being a fine doctor, he’s a good guy. I miss our chats.

Even if he is too far for your to travel as your regular doctor, he would be a good choice for a consult. I have a local cll doctor now, along with my new Cll doctor at MD Anderson, and that works for me. Im not that far from Houston, but there are many people in the US who travel long ways to MD Anderson to see a doctor there, so it can be doable long distance.

2021Ichanged profile image
2021Ichanged in reply tocajunjeff

Many, many thanks for your info. I am to see my GP today so will first look up Dr Thompson to see where he is and ask for a referral. Wishing you all the very best.

CLLerinOz profile image
CLLerinOzAdministrator in reply to2021Ichanged

Dr Thompson is one of what's now a group of Australian CLL specialists who have completed a stint at M D Anderson. He is now at Peter Mac in Melbourne.

CLLerinOz

2021Ichanged profile image
2021Ichanged in reply toCLLerinOz

Thank you for that. My GP couldn’t find him on his lists today and had not heard of him. He’s given me a referral for a Dr Xavier Badoux at St George Hos. for now but said he is happy to refer me to Peter Mac too. I will inform my GP of Dr Thompson being in Melbourne. Thank you.

Paulhonda profile image
Paulhonda

I go to Kinghorn Cancer Centre in Sydney. A number of good docs there - not necessarily dealing exclusively with CLL but they have many CLL patients.

2021Ichanged profile image
2021Ichanged in reply toPaulhonda

Thank you I didn’t expect a reply so soon. I am very grateful though as I am to see my GP today. The Kinghorn Centre did come to mind but hadn’t heard of them before. I will now speak to my GP about them. Many thanks, I appreciate it very much.

Biker7 profile image
Biker7

Last year I was given a list of Sydney CLL specialists.

Dr Sam Miliken Darlinghurst Kinghorne Cancer Centre or St Vincent's Private

A/ Prof 'John Moore Darlinghurst Kinghorne Cancer Centre or St Vincent's Private

Prof Stephen Mulligan North Shore Private

Dr Xavier Badoux St George public and Private

Prof Joy Ho RPAProf Mark Hertzberg Randwick

Prof Judith Trotman Concord

Hope this helps.

2021Ichanged profile image
2021Ichanged in reply toBiker7

found it. Thank you, thank you!!!!

2021Ichanged profile image
2021Ichanged in reply toBiker7

Hi there, just letting you know I saw my GP this afternoon and he’s given me a referral to see Dr Xavier Badoux, one from your very appreciated list. My GP says he has had a patient before under this doctor and only heard good things about him. I will give him a go.

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