Best MO / Cancer Centres in Australia?

[hansjd]

G'day. I'm currently receiving treatment for metastatic PC in Brisbane, which I think is probably the best SOC treatment available, but as many people on this site have suggested, it's a good idea to get a second / third opinion.

I've read so many posts that recommend good MOs and Cancer Centres in the USA, but so far I haven't seen any such posts for Australia. I know the Peter MacCallum Cancer Centre is very good, so that's probably the best place to start, but do any of our Aussie members have other suggestions?

I was diagnosed in Feb 2018 and am on Firmagon monthly injections and have so far done 5 cycles of Docetaxel. One more to go in mid July. PSA has dropped from 168 to 0.8, testosterone is undetectable, liver enzymes are all in normal range. But my thoughts now turn to what should happen after chemo. Monitor regularly? How? How often? Other treatment? What's the best approach to take?

My current MO thinks that 2nd line ADT treatments (e.g. Zytiga) should be kept in reserve for somewhere down the track. I'm wondering what other MOs would think.

Once I've finished chemo, I plan to increase my dose of atorvastatin, restart naproxen and maybe start metformin, all in the hope of keeping the mets quiet. Thoughts?

Thanks for any suggestions re both who to see in OZ and future medication regime.

[BrianE]

I am just up the coast from you at Tewantin and use a local private Urologist and RO/MO. I annoy the shit out of them by challenging their treatment.

I am now on Zoladex and Casudex and am probably castrate resistant, my mets are growing. At my age, 81, I want avoid Chemo and move onto Zytiga or Xtandi but the PBS have rules of treatment which set the prerequisites for these unless you can afford $3,000 a script instead of $39.00 on the PBS.

I think your MO is following standard practice for your treatment.

Here are the PBS requirements tor Zytiga from:

pbs.gov.au/medicine/item/2698B

"ABIRATERONE

Source General Schedule

Body System ANTINEOPLASTIC AND IMMUNOMODULATING AGENTS > ENDOCRINE THERAPY > HORMONE ANTAGONISTS AND RELATED AGENTS

Note

Special Pricing Arrangements apply.

Authority Required

Castration resistant metastatic carcinoma of the prostate

Clinical criteria:

The treatment must be used in combination with a corticosteroid,

AND

The treatment must not be used in combination with chemotherapy,

AND

Patient must have failed treatment with docetaxel due to resistance or intolerance; OR

Patient must be unsuitable for docetaxel treatment on the basis of predicted intolerance to docetaxel,

AND

Patient must have a WHO performance status of 2 or less,

AND

Patient must not receive PBS-subsidised abiraterone if progressive disease develops while on abiraterone,

AND

Patient must not have received prior treatment with enzalutamide; OR

Patient must have developed intolerance to enzalutamide of a severity necessitating permanent treatment withdrawal."

Up here most members of the PCFA support group use the public system's MOs, RO's and oncologists. I might join them.

Brian

[hansjd in reply to BrianE]

Hi Brian. Thanks for your reply. It seems to me you would qualify for Zytiga under the PBS, which is good, as long as you are determined to be 'unsuitable for docetaxel'. I know I wouldn't qualify at this time, but I still thought it would a good idea to consider options, even if I have to pay for them.

All the best with your future treatments. You might consider investigating LUT 177 treatment at the Wesley in Brisbane (Dr Wong). Not sure if it's appropriate for your type of PC cells, but certainly worth considering. Not cheap though. About $10000 a treatment and you could need several. Just a thought.

Hans

[jonnycrouch]

Have you considered Provenge or Keytruda- Mrec have just completed wide ranging stage two trials with Keytruda found to be very successful for our cancer- Ive used lu 177 twice - worked well cheers jonny- ps never has chemo there is a taxane natural supplement

[hansjd in reply to jonnycrouch]

Thanks jonnycrouch. I would certainly consider LUT 177 down the track. Glad to hear it was good for you. Where did you have it done? Brisbane? Perth? Part of a clinical trial?

All the best with your treatment.

[jonnycrouch in reply to hansjd]

Had it done in Sydney with Dr Nat Lenzo from Theranostics Australia- I paid for it a bit expensive I guess but a life- saver Good luck with everything Jonny

[paulofaus]

Hey Hansjd, Paul from Perth here. I'm not sure where to find the best Oncologist, it's a struggle here in Perth. The standard of care seems to be all that's on offer. I'm looking to do Lutetium177 in the next few weeks, I have a scan booked for tomorrow which is a preliminary step.

[hansjd in reply to paulofaus]

Good luck

[Hazard]

Hi Hans, I am being treated at Peter McCallum. I am generally very happy with the team, but they will only follow the normal SOC. I became castrate resistant after 3 months (PSA nadir 2.2) so I was put on docetaxal, PSA starting to rise again after 9 infusions and MO says that xtandi or aberiterone is next - I will find out next week. I have suggested several times that I am very prepared for more aggressive treatment (apart from fact that ADT and chemo are not working, I have tolerated treatment well) but they are just playing it by the book.

So I am not sure that you will get different/better treatment at Peter Mac. But the good news is, it appears that ADT is working for you right now so there is not a rush for 2nd line treatment.

We can't prescribe our own medicine but my advice is:

- exercise as much as you can. Join a gym, play tennis, buy a dog and walk it every day. I have started a gym program with ExMed Cancer and I feel great (when I am n ot thinking about PCa).

exmedcancer.org.au/

- improve the diet. There is a lot of discussion (for and against) dietary change on this site and I do not believe that a plant based diet will cure cancer. But it can have a positive impact on general health which helps deal with treatment side effects. I adopted a vegan diet when I started ADT last year, I lost 20kg, cholesterol and triglycerides nearly halved. I think that this health benefit has contributed to my tolerance of ADT and chemo.

ADT has negative long term impacts, so focus on what you can manage. Exercise and diet, we can manage these things and I believe that' its really important that we do.

Good luck, and keep fighting. Let us know if you can find someone who is willing to step outside the SOC and really get after the buggers.

[hansjd in reply to Hazard]

Thanks a lot for your reply. A good diet and lots of exercise are valuable suggestions. I'm already doing the former but my low haemoglobin after 5 docetaxel cycles means any strenuous exercise will have to wait about a month til chemo is finished.

I had a feeling that Peter Mac would probably follow only normal SOC. I'll keep asking around about other MOs / Cancer Centres and let you know if I find one that's willing to step outside the standard SOC.

Do stay positive. Have you considered LUT 177 ? Peter Mac, together with other centres around OZ, have a trial underway but it's already available at the Wesley in Brisbane and Theranostics in Perth. All the best. Keep fighting.

[Hazard in reply to hansjd]

Hans, i should have added - while Perer Mac sticks to SOC, it is a good place to be for access to trials. My MO is involved with all the trials underway - eg AKT inhibitors, PRRP inhibitors, Lutetium are the ones he has discussed with me and he will enrol me if he thinks there is benefit.

Regardng your question about Lutetium - my MO said that he would enrol me in this trial if PSA failed to respond after 4 rounds of docetaxal. Fortunately I had a good response to docetacal (PSA down from 47 to 2) so this is on hold right now. Of course the thing with the trial is, you either get abiriterone or lutetium on a random selection. The only sure way to get abiriterone is to pay for treatment from Theranostics in Perth ($8k per infusion), but I don't know what criteria they apply before accepting people for treatmemt. I would love to get Lutetium right now, MO seem to like to space out treatments but I would prefer to hit the bastards hard now while they are still in docetaxal hangover. I have appointment with MO next week and will raise this option.

Regards, Hazard

[hansjd]

Hazard, I asked about LUT 177 straight away when diagnosed, but was told that it was still 'experimental' and should be considered only after more trials were done, even though you can 'buy' the treatment now in several sites in Australia. However, it does seem to be more for those that are mCRPC than for those newly diagnosed and for the moment I'm having good results with the SOC I'm receiving. Hope it continues for a good long while!

I have to say though that I've very happy to know that LUT 177 is a definite possibility for down the track. It seems to be very effective for many. It's been in use in Germany since late 2015 so information should become increasingly available re any longterm side effects. Thanks again for your sharing and support. I'll follow how you go.