A while ago we had a post asking what's happening with regard to CLL in Australia, specifically South Australia. Regular readers will recognise Dr George Follows as a high profile CLL specialist from the UK who will be speaking this month in Adelaide on the above topic. If you are interested in attending, please contact the Leukaemia Foundation on (08) 8204 5216.
Neil
Hi
Is there any way a summary of this talk can be added on here? Am keen to know what the latest views are with treatment imminent I feel we are being pushed down the standard route and would like to go armed with other options to quiz consultant on. I've now met her (I'm a relative not a cll patient) and she's a nice consultant but seems stuck in her ways. She's always treated cll with chemotherapy and that's what she intents to do. I've asked her about other options but it appears there aren't any available .
Hi Tom
I am from South Australia and was in the same position. For all Australian patients, the best thing to do is get a referral to Dr Con Tam in Melbourne for a second opinion when your specialist says treatment is necessary. Con is the guru of CLL in Aust and is on top of all latest trials and research. He may recommend a treatment available in your home State or a trial.
I got on a trial through Con and I fly over for a checkup and more pills each month (3 monthly soon). Everything's going great so far. This is all at no cost and I even get reimbursed for flights and hotels.
Cheers
Graham
Hi Graham
I am regularly seen by a Professor Haematologist at the same hospital where you are treated by Dr Con Tam. I think they work as a team, meet regularly, they have same approach in treating CLL. My Specialist is well known too, but Dr TAM seems to be very famous, in Australia and other countries!
Ezabella
Hi Ezabella
I've seen some of Dr Tam's co-workers when he wasn't available and they've all been good. I agree with what you say and I'd be happy with any of the team.
My first local specialist said I need treatment (after monitoring for 18 months) and so I should see a different specialist. The second specialist I was referred to said I needed FCR. I asked about mutation status and was told this wasn't tested for outside of clinical trials and no trials were available. After some Googling, I found that mutation testing was available at a local hospital and that a suitable trial was being offered at the centre I was going too but just hadn't been updated on their website. My next request for a referral to the team in Melbourne and that's worked out much better.
It must be hard for specialists who treat a broad range of disorders to keep up to date with a specific disease like CLL. My experience supports the usual advice here to see a disease-specific specialist before treatment.
Graham
Hi Graham
That's right. Dr Tam is a CLL specialist, so you can trust you are in good hands.
I've been to 3 haematologists in 3 different hospitals prior to transferring my treatment to Peter Mac in Melbourne, where I settled now after started to see my Specialist Prof John Seymour, so far no treatment, which is great.
Ezabella
Dr Peter Diamond from the Leukaemia Foundation has advised me that they aren'the organisers of his event as Janssen decided to do this through the Flinders Foundation. He continued to say that, "I just wanted to make sure people who are registered with us know about this education opportunity. Availability of the presentation for those who can't attend is at the discretion of the presenter. Those that have come from from the UK for these presentations in the past have not allowed us to distribute their presentation. Anyone wanting a copy will need to speak with the organisers as we have had no contact with Dr Fellows."
While this is disappointing, it does show the value of joining the Leukaemia Foundation if you are an Australian with CLL, as you will be made aware of a range of excellent educational sessions and support groups relevant to you and provided with newsletters and other CLL related updates in Australia. The Leukaemia Foundation also provides a range of other services that may invaluable, such as their patient transport service to medical appointments and for regional members, accommodation near treatment centres when you need treatment.
Neil
Well worth attending if you can. Dr Follows gave a talk in the uk to the CLLSA in march 2017 that can be found cllsupport.org.uk/article/2.... FCR still the gold standard if you are 'fit enough' and he gives reasons why the new treatments might be kept in reserve for use later in treatment.
other meeting reports many with videos can be found at cllsupport.org.uk/members-c...
Hi Neil, Re Dr George Fellows presentation. I live in Melbourne so cannot attend. Will his talk be recorded so we can view it on line. I think it will be so interesting to hear him
Yours Sincerly "Roszkia" Rosie is my actual name
Leukaemia Foundation will ask if a copy of the presentation can be provided. I don't know whether the Flinders Foundation, who are arranging the presentation, make videos available.
Thanks so much for your immediate response Neil. Cheers Roszika
Be interesting to hear a report from anyone who attends this presentation tomorrow.
South Australian members, please note that the Leukaemia Foundation has a regular CLL/CML Support Group
Location: Bridgestone Australia Leukaemia Foundation Village (39 Folland Avenue, Lightsview)
Time: 10am – 12pm
Date: Last Monday of every second month
Dates left for 2017: 25th September, 27th November
RSVP for more details: Andrew Read – 0439 500 951
The Leukaemia Foundation in South Australia also have a monthly social meeting for all men supported by the Leukaemia Foundation at the same venue. Again, Andrew can provide details.
Neil
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