Australian current treatment legislation

[Waves01]

Is it correct that in Australia currently for a SLL /CLL patient, if you are NOT 17p del but still unmutated igvh and mutated tp53 ( meaning FCR is unlikely to be effective) , you will still need to go through FCR before having an option like ventoclax or or a BTK inhibitor?

[AussieNeil Administrator]

Unfortunately, you are correct, with the exception that if you have mutated TP53, then you do meet the requirements for treatment with a newer, targeted therapy. This situation is also pretty well the case elsewhere in the world too.

It is still extremely important to have both FISH and TP53 testing done before starting treatment in Australia. FISH testing is well accepted and given the incidence of 17p del, there should be absolutely no question about this being done. TP53 testing hasn't been much done in Australia until relatively recently - because it didn't influence treatment choice unless you could find a suitable clinical trial. Given that some of us can access the newer treatments if we are TP53 mutated, we should insist that this be done prior to starting treatment, as you aren't likely to have a good remission on FCR or BR with a TP53 mutation.

It is possible to have a reasonable remission length if you are IGHV unmutated, but it is unlikely to be as long as if you are mutated IGHV, plus if you are unmutated IGHV, you don't get the ~55% chance of a cure with FCR treatment.

Neil

[HopeME in reply to AussieNeil]

Are there any clinical trials that Waves01 might qualify for to avoid FCR as an unmutated patient down under?

Waves01: If not don’t despair. I had BR chemo frontline as an unmutated patient and I’m almost three years out with no relapse so it is possible to get a decent remission as an unmutated person. I wouldn’t do it again if I could avoid it but it can work.

Good luck,

Mark

[AussieNeil Administrator in reply to HopeME]

Mark and Waves, it depends very much on where in Australia Waves lives: clinicaltrials.gov/ct2/resu...

[Waves01 in reply to AussieNeil]

Hi Neil. My haemo has said he does not do tp53 or igvh mutation tests. How do you go about getting these tests? I’ve had the fish results from the bone marrow biopsy. Trisomy 12 and 14q deletion. Everything else ok at this stage. I expect to be unmutated because of trisomy 12 from what I’ve read.

[CLLerinOz Administrator Volunteer in reply to Waves01]

Hi Waves,

If you don't already have a known del (17p) or TP53 mutation by cytogenetics or FISH, you can make your haematologist aware of this opportunity:

"As a result of the generous philanthropic funding provided to establish the Wilson Centre for Lymphoma Genomics, the Molecular Haematology Laboratory at the Peter MacCallum Cancer Centre is pleased to be able to provide fully subsidised TP53 and IGHV mutation testing for patients with chronic lymphocytic leukaemia (CLL) over the period commencing 16 April 2018 until 30 June 2021."

"Patient eligibility

To be eligible patients must:

- be aged<70

- have a diagnosis of CLL meeting conventional criteria for treatment

- have no known del(17p) by cytogenetics or FISH (or TP53 mutation)

- not have been previously treated for CLL and are being considered for chemoimmunotherapy"

The Peter Mac website has a request form which your haematologist would need to complete.

petermac.org/sites/default/...

[Waves01 in reply to CLLerinOz]

Thank you. I’ll see if he will do it for me.

[Waves01 in reply to CLLerinOz]

Thank you

[Waves01 in reply to HopeME]

Thanks Mark. On the Sunshine Coast, Queensland.

[Rex12 in reply to Waves01]

Hi Waves, I’m on the Sunny Coast as well. My local haematologist has utilised Peter McCallum in Victoria for my screens. Prior to my first treatment I read up on treatments, but what’s available on PBS is basically what you get unless you can access a trial. I didn’t go down that path due to Covid and travel time. Best wishes

[Waves01 in reply to Rex12]

Thank you. I have just asked my haemo to contact Peter Mac. Did you have FCR?

[Rex12 in reply to Waves01]

No as I’m unmutated IG?? so I went with Gazva (obiz) and chlorambucil, in Dec 2020 a better first treatment drug was put on PBS which would have been a a good option for me rather than the chlorambucil.

[Waves01 in reply to AussieNeil]

Thanks Neil. Appreciate the quick answer.

[seelel]

If you are 70 or over you are eligible for treatments other than FCR.

[MareeM]

Yes, I am unmutated, had 4 rounds of FCR which fortunately put me into remission. My Haematologist told me, when I have my next flare up I will have to have 2 rounds of FCR firstly before the newer treatments.