Here’s one for our Aussie members. I am considering ‘a shift across the ditch’ probably to Victoria because I have immediate family there. I have been on W&W for 5 years and have a pretty good prognosis although I guess if I live long enough I will need treatment (76 now) eventually. I am wondering what first- line treatments I could access when I need it if I did make the move. I have done a bit of research and am wondering if in fact it’s not too different over there from what it is here although it does seem there a few more funded second-line options. I’m thinking there would be much better access to CLL Specialists and clinical trials but I may be wrong there too.
Look forward to hearing your views fellow (Aussie) CLLers.
Diane
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Kiwidi
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Your research is basically right with regard to newer treatment access, but hopefully that will continue to improve in both countries. Moving to the state of Victoria definitely gives you choice access with regard to recognised CLL specialists, helped by a strong association between M D Anderson and Australian CLL researchers based in Melbourne, which is largely why there are more clinical trial opportunities here. Of note, venetoclax development began at the Melbourne based Walter and Eliza Hall Institute of Medical Research. (Our population is about 4 to 5 times that of New Zealand's, but we are also much more thinly spread across a country that is about as large as the USA's 48 contiguous states.) Dr Philip Thompson and Dr Con Tam have both returned to Melbourne after developing their CLL expertise in Houston Texas and Dr Michael Keating moved from Melbourne to M D Anderson, where he developed FCR, which was the first CLL treatment that was proven to extend life expectancy. There are recognised CLL specialists in other states, but you don't have as much choice.
NZ definitely (at the moment) funds newer treatments a few years after they have been funded in Australia. Hopefully that may change as there has been considerable publicity about how onerous the process is and about how many fewer drugs are available here.. I think we rank pretty much on the bottom of the scale- Australia funds 75% of the most common cancer drugs as opposed to NZ’s dismal 35%. I am lucky as I have a bit of time on my side ( hopefully) and the process of actually coming to live in Australia is pretty seamless ( from what I can gather) It would certainly be reassuring to be living closer to where there are specialists and clinical trials Much as I love my country there are a number of other non-health related advantages to making the move. Just weighing up the pros and cons at the moment and certainly not going to rush into anything. Thanks again D
Diane, I was treated by both Dr Keating and Dr Thompson at MD Anderson. I can echo what Neil said, Thompson is still practicing and a great choice for anyone. He is very good at what he does and he cares, two different skills.
That said, unless one has very complex and challenging cll, I dont think a super specialist is always needed. At age 76 and still in watch and wait, treatment for you, if you ever need it, could be as simple as daily acalabrutinib. It might well be the only cll drug you would ever need and allow you a chance to live a normal life and normal life expectancy. As a first time treatment, resistance to acalabrutinib is quite rare, I understand. For many people, if not most, a very easy drug to monitor with periodic labs.
The combination of venetoclax and Gazyva is another option. It has the advantage of being time limited for many people. I personally, and this is just me, think that combination therapy is better done under the supervision of a Cll specialist with more experience. Two drug combination therapy has advantages, but comes with a risk of toxicities that can require a lot more tweaking and monitoring by someone with a lot of experience.
I dont know what choices one has in either country. I just wanted to throw out there that if acalabrutinib is available in New Zealand, at your age and still being in watch and wait, it could be a simple drug option for you and the only one you ever need.
I appreciate you thoughtful reply. Sounds like Melbourne is certainly one of the better places to live in terms of specialists and clinical trials. I am happy with the haematologist I finally saw here in Christchurch but she was adamant that I could only have chemo as a first treatment unless I was able to self fund one of the newer options. I guess that is what is so frustrating for us here in Aotearoa NZ (and from what Neil says, in Australia also) Venetoclax is funded as a second line treatment and ibrutinib as third line unless you are 17p deleted or TP53 which I am not. Alacabrutinib is definitely not available here.
Hi, I'm in Albury and travel 3 hours to see Prof. Con Tam in Melbourne who is also excellent. I was able to access Venetoclax/Gayzna first line here due to also being a type 1 diabetic, I'm 57. Given your age and good prognosis by the time you require treatment even just your age may be a qualification by then for the newer therapies first up. Con is involved with many clinical trials for CLL at The Alfred Hospital in Melbourne and they are often a great option for front-line treatment. I'm doing well so far on the OV combination therapy.
Do you know if any allowance is made for age in Australia when considering treatment? It certainly isn’t here in NZ. That could well be something that would affect my decision.
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