Aussie CLL

[Fofow]

Hubby has had cll for 4 years, he's 45 yrs old and becoming symptomatic. Can anyone give me some information on drugs available in Melbourne Victoria? Venetoclax?

Any Australia specific information is much appreciated

Thanks

[Cllcanada Top Poster CURE Hero]

Sorry, I can't speak to drug availability, but I advise you to consult with Dr. Tam at Peter Mac in Melbourne.

He is a world renowned CLL specialist, and can best advise on your husband's treatment course

Dr Tam is a Haematology Consultant at Peter MacCallum Cancer Centre.

~chris

[Aussiejock]

Hi fofow

I am in Australia and currently being treated. The PBS Approval is the big thing to look for. Most of the newer drugs are only available through clinical trials. Sadly ventoclax is one of those. imbruvica is another but the manufacturer will provide on special circumstances if you are 17p deleted.

Most PBS approved are the tried and tested and economically available FCR and BR. I am on BR. Most of the newer targeted drugs a not available for treatment niave ether. The government want us to stick to the cheap tested drugs first.

In basic what I found is there is a lot out there and you will see them on this site but being treatment niave and in Australia they are not readily available outside the clinical trails. Having said that there are a lot of clinical trials and there is one at the moment for ventoclax. If you speak to the Peter Mc cancer centre they will give you the details.

If you need anything else let me know.

One thing to watch out for is the pathology on bone marrow biopsy if you do not have hospital cover it could be expensive. Over 1500

Yell if you need and I will give you my simple view of life

[Fofow in reply to Aussiejock]

Thank you Aussiejock, extremely helpful input...that's what I was afraid of. Going for a second opinion in a month to Dr. Kylie Mason at Royal Melbourne..still in watch and worry so suppose we have time on our side (for now)

Hopefully our government will see the benefit of subsidising these newer drugs for all 😊

[jorum]

Not sure of your husbands diagnosis but FCR is a good/the best option if not 17p or un-mutated.

Otherwise you could ask Dr Constantine Tam or Dr John Seymour at Peter Mac about BGB-3111 with or without obinutuzumab. BGB-3111 is a second generation BTK inhibitor (compare with ibrutinib) which appears promising, but unproven and hence available as a trial drug. Obintuzumab targets the CD20 on CLL-Bcells and my interpretation is that this enhances BTK inhibitors in much the same way that R enhances FC in FCR.

The guys at Peter Mac are really at the front-line of CLL research and I am sure they would offer the best advice.