Update following meeting with MO

[Benkaymel]

For those following my journey, I had a face-to-face meeting with my MO today and learnt a few things I didn't know. Firstly, the genetic test of the liver tumour the NHS do only tests for BRCA - no other genes. The reason appears to be that the only treatment they would offer is a Parp inhibitor so there's no point testing for anything else. I will go ahead with the liquid biopsy through Guardant360 but he pointed out that if it shows up anything else such as MSH-hi suggesting Keytruda might work, this is not licenced in the UK so I couldn't even get it if I paid privately. I would have to go abroad.

I got a second opinion via email from Professor DeBono at Royal Marsden and he basically said that given my situation, either cabazitaxel or carboplatin (or both) is the next (and only remaining) treatment available. My MO said that my blood works suggest I couldn't take the combo so he is referring me for carboplatin. This may well knock back the liver mets but they are likely to return fairly quickly. Does anyone else have experience of having carbo with liver mets? Did it work and for how long was it effective?

[Tall_Allen]

IDK why you think that genomics are potentially more useful than histology and IHC.

[Benkaymel in reply to Tall_Allen]

They've already done histology and won't do IHC - I would have to do that privately. What would IHC tell me that genomics wouldn't?

[Tall_Allen in reply to Benkaymel]

Histology and IHC tells you what kind of prostate cancer it is and which therapies may be more useful. It also gives a much clearer indication of MSI-hi, if that is present, also any experimental therapies. My "wish list" is: AR (androgen receptor), PSA, PSMA, MSH2, MSH6, STEAP1, PD-L1, PTEN, chromogranin A (CGA), neuron-specific enolase (NSE), synaptophysin (SYP),  DLL-3, CD56, Somatostatin (SST)

[NickJoy]

Thank you for the update. Would you be able to get the histology (of one of the mets?) like TA suggests? This might open up some options but I guess you would need to go overseas to pursue them. I have read several reports of chemo clearing the mets in liver. Hopefully someone who has experienced the chemo will chip in soon.

[NickJoy in reply to NickJoy]

Sorry I missed your answer above.

[NickJoy]

These guys offer a no cost option but im not sure if you need to live in US.travera.com/prostate-cancer

[Ian99]

Thanks for the informative post. Sorry to hear about the limitations. If you go abroad to get a diagnosis which cannot be treated here, you might consider the S2 process. I was in that situation several years ago. There is paperwork and your MO would need to sign off the application form, but the NHS would cover your costs. I could put you in touch with an oncologist in Paris if you want to proceed down this route.

[Believeit]

Hi. My husband has liver mets from prostate cancer that are Neuroendocrine. In July he started treatment with Carboplatin and Etoposide combination. He had an FDG scan in November when he completed chemo and it showed “no metabolic activity” The chemo worked much better than his MO even hoped. He is waiting for a further scan in February to see if it is still the same. If so he has the option to do Pluvicto for his bone mets (which are stable) or to try and get on a trial. All his bloods are good and he has no symptoms. Hope this info helps.

[Benkaymel in reply to Believeit]

Very helpful and encouraging. How did he tolerate the carboplatin? Side effects?

[Believeit in reply to Benkaymel]

He had very few side affects but did have to get 3 blood transfusions during the 6 cycles as his haemoglobin was low which was making him a little short of breath. We were told by the MO before treatment that this might happen. Good luck with your treatment.

[Benkaymel in reply to Believeit]

Thanks

[StayingOptimistic in reply to Believeit]

How was it diagnosed as neuroendocrine please ? I am very anxious and worry that mine is. Wish you best of luck and happy new year

[Believeit in reply to StayingOptimistic]

Hi there. They carried out a biopsy before chemo started. That is why they went with the combo of carboplatin and Etoposide. We are very happy that it worked so well. Good luck to you.

[Proflac]

Thanks for the update. I guess its the NHS version of 'no point in testing if it won't change tx' but you might have the option of tx overseas so that's not entirely fair. Will you be able to pursue the IHC? It's good to know that Debono reinforces your MO about carbo. From posts here it looks like it has helped others. Best wishes.

[Benkaymel in reply to Proflac]

The NHS won't do IHC. As you say, I think carbo is as good as anything as the next treatment.

[CrocodileShoes]

I'm sure I'm not typical, but I had a horrible experience with carboplatin (although as it was combined with cabazitaxel I can't be sure where the toxicity came from. I got neutropenic sepsis and nearly didn't make it. Stopped after one infusion (though it reduced PSA by 50%)

[skiingfiend]

Hey benkaymel, have you started your chemo yet? If so how's it going.

I was just recently diagnosed wth small cell and numerous liver mets. I am starting cisplatin + etoposide in about 10 days.

I am interested in staying in touch and sharing experiences with anyone that is on the same path we're on.

EDIT:

Sorry, I just reviewed your recent post history. God bless you and your family.

I may be joining you in the under 2 year club. I've been treated for 14 months and have been given 6-12 months based on my recent developments.