Update after consultation w/Royal Marsden

[CrocodileShoes]

I promised I would address some requests for information following my consultation with Prof. Johan de Bono and his team at the Royal Marsden Hospital. The trigger was a marginally raised PSA (now 4.4) and some evidence on more bone mets, failing Enzalutamide and being offered a course of chemo (which I declined) I want to stress that I've had the same onco for 14 yrs, and have huge respect for him. I just felt that this was the right time to seek a second opinion.

I could write at length about my experience, but salient points are:

1. The Oak Cancer Centre is brand new state-of-the art facility;

2. If there's a more knowledgeable and experienced researcher than De Bono, I'd like to meet him/her. He's led many of the really innovative trials and studies in PCa for a long time. What I wasn't expecting was a warm, humble, gregarious human being, who is also a great educator.

3. A multi-disciplinary team had already met to review my scans and numbers - which was itself impressive and saved a lot of time;

4. The professor's opening remarks were 'This cancer is not putting your life in danger. You can live with this for a long time. And you probably don't need to do much right now - there may not be a rush to do anything' (At this point, I was glad I was recording it, because my brain was overwhelmed by this news.

5. He went through some of the trials they're involved in (including Lutetium 177, saying that it would probably soon be approved for use in the UK on the NHS). He was also very interested in my family history (my mother died of breast cancer and said there was a strong possibility of a genetic mutation, but as they're identified over 140 mutations (and counting) that could take time. I'll soon have a biopsy fresh from the main tumour

6. The 'holding strategy' is to take a baby dose of dexamethasone. they're about to publish a paper suggesting a possible 40% response to the steroid- the main side effect seems to be that I start talking like Donald Trump....

7. If that doesn't work, he suggested going into the upcoming trial looking at gut biomes. The working hypothesis is that some gut bacteria could lead to both prostate and colon cancer (as I've had both, I said yes) The trial will consist of a cocktail of antibiotics over a 4 week period, and starts in a few weeks.

8. I'm not naive enough to believe that a steroid or antibiotics will put the beast back in the box long-term. But I'd been told that there was basically one more can left to kick, down an increasingly shortening road. So this buys time enough to really investigate the genomics and possible PARP inhibitor treatment (he mentioned Olaparib) And to hear someone of his reputation say 'You did right not to opt for the chemo - and you're a long way from needing Lutetium PSMA' was hugely reassuring.

Hope some of this is useful to others.

[NickJoy]

Thank you so much for taking the time to report back. Really interesting and important information for those of us in uk and elsewhere.

[HopingForTheBest1]

I was also hesitant about having chemo,especially since reading about Docetaxel's potentially severe side effects. I eventually went with a combo chemo of Cabazataxel and Carboplatin. Was on it for a year with no significant side effects, and I kept my hair. It kept my cancer stable; not as much as I was hoping for.

I was found to have the BRCA2 genetic mutation Had Olaparib, which kept my PSA undetectable for 18 months until it eventually failed. This has been my most effective treatment to date. Currently on Pluvicto with 4 treatments done so far.

[Scout4answers in reply to HopingForTheBest1]

Hoping

You and I have similar profiles but you are 3 years ahead of me, mine is metastatic but only to two Lymph Nodes. I have been thinking a lot about what to do next and one of the drugs that has been mentioned on this board and used successfully is DCA.

ncbi.nlm.nih.gov/pmc/articl...

Magnus got 3 years of no progression and I believe others have had similar benefits. I do not have a plan on how or where to get the vaccination as it will be a repurposed drug to fight PCa. Might be worth pursuing.

[GP24]

I have a friend who takes low dose Dexamethasone against PCa. It works well for him. When the paper by Johann de Bono is published, can you provide a link to it?

[CrocodileShoes in reply to GP24]

Of course.

[Scout4answers]

6. The 'holding strategy' is to take a baby dose of dexamethasone. they're about to publish a paper suggesting a possible 40% response to the steroid

Interesting, could you link to study and provide more info.

[Ian99]

Thank you for this informative post. In a prior post you were looking to replace Xtandi. Did you replace it in the end or is the Dexamethasone aimed at making it work better? Lastly did you need a referral to contact Prof de Bono? Best of luck with your treatment.

[CrocodileShoes in reply to Ian99]

It's not a replacement. The Xtandi was a dead duck for me - it ws no hardship to give it up. But of course, I don't know if Dexy's Midnight Runners will provide a viable alternative. I did need a referral (through my hospital in Leeds) but there was no cost. Thanks for your good wishes.

[marnieg46]

That's really great news. I'm really glad for you. Sounds like a fabulous outcome.

[CrocodileShoes in reply to marnieg46]

Thanks Marnie! I guess that means that I won't be using the Aussie Health Service - for a while anyway! I'll be eternally grateful for the reciprocal arrangement we share, however.

[marnieg46 in reply to CrocodileShoes]

Yep it's a great arrangement we share with you Brits and the Italians and a few other countries...not the US or France unfortunately.

[Proflac]

Many thanks for your post. Did you get an NHS referral or private? How long did it take?

[CrocodileShoes in reply to Proflac]

NHS, through my consultant of 14 years. He knows Prof De Bono so that helped. But it was 2 weeks from letter to consultation.

[Proflac]

Thanks and good luck. You are fortunate to have had such a great consultant in Leeds. I am thinking of referral to Marsden for my husband who is really suffering from affects of treatment despite lowish PSA and clear CT/bone scans. He seems to be getting more and more tired and frail. I have asked about low dose estradiol patches but they won't prescribe anything even slightly off SOC. Not sure what else to suggest so maybe another consultant might have a view. I take it that Leeds are happy to follow de Bono's advice! He is the top man. As you know switching consultants is not quite so easy in the UK as in the USA but a second opinion might be helpful. Thanks again for the info and keep us posted.

[85745]

Good info thanks, I mentioned in one of my posts the importance of proper gut biome, in general you can have a build up of bad bacteria over good bacteria. Reports point to the fact that antibiotics kill the good and bad bacto. And can lead to a candida overgrowth enviro. Bad bacto seems to be the predominent factor once the anti biotics are done. I myself opted out of chemo. not a suggestion just my choice. I keep hearing and reading about the use of courses of antibiotics like Doxy etc being used in cancer treatment protocols. Still trying to understand the concept. Again I will mention look into the studies pointing to the benefits of detox and digestion and the use of Tudca suppl. Modified Citrus Pectin also for detox ie cancer cell die off.