Consulting a CLL Specialist

[nuji]

For those who live in countries which don’t have access CLL experts, are there any options of on-line consulting (paid or otherwise) CLL specialists/experts?

Any pointers would help.

[lankisterguy Volunteer]

Hi nuji,

I asked Dr. Brian Koffman about this idea, but the answer was that insurance issues and medical licensing requirements in your country. would put the doctor and the service at risk.

The only option might be to get a licensed doctor in your country to contact a CLL expert doctor in another country. The CLL Society list of CLL Experts includes countries like India, Germany and Greece.

cllsociety.org/newly-diagno...

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Len

[nuji in reply to lankisterguy]

Thank you very much for your reply

[wellbeingwarrior in reply to lankisterguy]

My country isn’t on the list of countries 🤣

[lankisterguy Volunteer in reply to wellbeingwarrior]

See the comment below from MrMidnight : " Hi Nuji, I live in Auckland, New Zealand, and I have contacted Dr Constantine Tam, in Melbourne, by email to ask if he does online consultations (for a fee).

He said he does and to contact his chambers to set up a Zoom meeting (an offer I have yet to take up).

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The only other option might be to get a licensed doctor in your country to contact a CLL expert doctor in another country.

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Len

[wellbeingwarrior in reply to lankisterguy]

Thanks Len

I see a Haematologist in NZ privately. CLL is one of his specialties. He seems decent. I’ll be seeing him next week and the discussion of treatment will come up again. Also, we have limited access to treatment options here. FCR or Ibrutinib (at a cost) are the only options for first line therapy. From what I’ve read fixed duration Venetoclax could be preferable but that is only available here for relapsed CLL. But I’ll be asking his opinion on that. If I had all the right markers I’d be tempted to opt for the shorter duration FCR (spray and walk away) 🤷

Our biggest complaint in NZ is we don’t have access to IgHV testing at all, therefore not all parts of the picture can be seen when making treatment decisions. I’m unsure whether we can pay to get it done in Australia, and that will be one of my questions. There is work underway through the NZ Blood Cancer & Leukaemia organisation to rectify this and have the test available in the future, but we don’t have it yet. There is recognition here that personalised treatment plans are the way forward for CLL however we have more hoops to jump through in the way our healthcare is funded and the lack of availability of newer drug treatments.

Nice country to live in though. 😁

[MrMidnight]

Hi Nuji, I live in Auckland, New Zealand, and I have contacted Dr Constantine Tam, in Melbourne, by email to ask if he does online consultations (for a fee).

He said he does and to contact his chambers to set up a Zoom meeting (an offer I have yet to take up).

He was the lead investigator for Zanubrutinib in a clinical trial I was on for four years and I have no idea whether that made it more likely he would give me a consultation but it could be worth contacting him. Also, Australia and NZ are closely linked, so that may make a difference too.

He is widely considered to be a guru for CLLL in this part of the world. It might be worth contacting him to see what's possible.

Best wishes, Graham

[nuji in reply to MrMidnight]

Thanx Graham for the lead.

[wellbeingwarrior in reply to MrMidnight]

Graham who do you see in Auckland? I’m with Dr Henry Chan.