looking for advice.

[Believeit]

My husband Martin was diagnosed in 2019 with prostate cancer. Gleason score 7 (3+4) Biopsy showed 12 out of 16 cores. In June 2019 he had Robotic surgery. We were told everything went very well. His PSA dropped to <0.05. This lasted until September 2020 when his PSA started to increase 0.46. And continued to rise. Went to the UK for a PSMA scan as none available in ireland. Scan showed 1 pelvic lymph node involved. Martin had radiotherapy in October 2020 to lymph nodes in the pelvic area. He was also put on ADT for 6 months. PSA dropped to <0.05 and stayed undetectable until August 2021 when it rose to 0.13. We were told not to worry. Bloods in Feb 2022 showed PSA was 8.63 and 7 days later 11. Ct scan showed numerous bone mets in ribs, hips and spine.(approx 10) He was put back on ADT and given 6 docetaxel sessions. (One every Every 3 weeks) he tolerated it very well. He was also put on daralutamide.

By 7th March 2022 his PSA had dropped to 0.97 in August 22 it was <0.05 and continued to stay at that level until todays results. 17May 2023. It is now 0.80 and scans show 2 small areas of concern on his liver. He is having an MRI next week to clarify if they are PC mets but the MO thinks they are. His bone mets were unchanged. My question is. What are the treatments available now? The MO mentioned more chemo and PSMA?? We are in shock right now. He is doing very well. No pain etc.

Any advice will be much appreciated.

[MyDad76]

I do not have the knowledge to provide advice, but you have come to the right place. I would just like to say that I understand how stressful the whole situation is for you. This disease is just so unpredictable. And individual. I will just never get it. I will keep my fingers crossed for you & your husband. Greetings from Slovenia.

[Believeit in reply to MyDad76]

thank you.

[GP24]

Have the old biopsy probes sent for genetic testing. Maybe Pembrolizumab can be used if the genetic test shows he is eligible.

[Hidden in reply to GP24]

You think the probes were kept the last 4 years???

[Believeit in reply to Hidden]

I will definitely check. Thanks.

[GP24 in reply to Hidden]

The probes are kept for at least ten years:

"For instance, according to the College of American Pathologists, [...] paraffin blocks, wet tissue, and fine-needle aspiration specimens on slides are to be stored for 10 years."

academic.oup.com/clinchem/a...

[dhccpa in reply to GP24]

Good to know

[Tall_Allen]

I'm sorry to hear it. PCa can be relentless. Cabazitaxel+carboplatin might be a good next step. If the liver lesions are large enough to biopsy, if they are BRCA+ it may respond to a PARP inhibitor.

I don't know oncologists in Ireland, but Johann DeBono at the Royal Marsden is working on a lot of new stuff. Maybe you can get a consult?

[Believeit in reply to Tall_Allen]

thanks for info. Lesions are very small so may not be able to biopsy. Martin had “Color” test done at the start and results did not show BRCA+.

I will see if we can get a consult with Johann DeBono in the Royal Marsden. The Royal Marsden is where Martin had his PSMA scan.

Thanks for your help.

[Tall_Allen in reply to Believeit]

Color is only a germline test. If there is enough tumor tissue, they can do a somatic test to find out the genomics of his recent metastases. In about half of men, BRCA+ will be found in somatic tests, but not germline.

[Believeit in reply to Tall_Allen]

ok thanks. I will check this out. Martins prostate was removed so I’d assume they did a biopsy and hopefully the probes will still be available to do a somatic test. . We will have a lot of questions for next week when we get the MRI results. Thanks again. .

[Tall_Allen in reply to Believeit]

Unfortunately, the prostate tissue tells you nothing about how the cancer has evolved in his metastases. It is probably useless to look there. Mutations accelerate as metastases develop.

[Believeit in reply to Tall_Allen]

ok so a biopsy should be done if possible on the Liver lesions. Thanks for letting me know. Do you think Lu177 would be suitable to use on PC liver mets? Or would Cabazitaxel+carboplatin be a better place to start. Martin has no symptoms. Is working away and very healthy otherwise. Thanks. Nancy.

[Tall_Allen in reply to Believeit]

Pluvicto doesn't have a good record with visceral metastases, but that may be because they are often discordant (i.e., not PSMA-avid, but show up on FDG only). If they express PSMA, one of the BiTE trials may be a good choice.

[Believeit in reply to Tall_Allen]

ok thanks.

[TomMaloney in reply to Believeit]

I just want to praise you for all your effort to help Martin. It must mean the world to him.

We'll have to classify you as a Guardian Angel.

[Believeit in reply to TomMaloney]

Ah thanks. Hopefully all the information helps and he can be with us for a long time to come. 🤞

[OzzieJ]

Am also in Ireland and currently undergoing pelvic radiotherapy plus 3 years ADT plus apalutamide for similar recurrence. I’ve had PSMA scans both in Cork and in Blackrock clinic so probably it was a new service when I had my scans last year. But just to be aware in case you need it again. This disease is awful so just wanted to wish you both well and hopefully the whatever new treatment pathway you choose works well.

[Believeit in reply to OzzieJ]

hi again. Am just wondering, is your MO in Dublin? We are based in Cork and Martins MO is Conlith Murphy. Just wonder who do you attend? Sounds like they are very thorough. Best of luck.

[OzzieJ in reply to Believeit]

Sent you a DM👍

[Believeit]

thanks for that. I didn’t realise there was one available in Cork. Thanks for the good wishes. Hope you are doing ok.

[RMontana]

See if these 3 case studies can help. They reveal a lot of terminology, criteria for treatment and testing that I either did not know about, or would not have known to ask for.

healthunlocked.com/active-s...

The important thing is to understand what testing can be done to better determine what type and grade of cancer cells you have. These links may help understand what testing is out there and if any are of use or in need before you proceed with treatment.

healthunlocked.com/active-s...

healthunlocked.com/active-s...

healthunlocked.com/active-s...

Good luck and let us know how things proceed. Rick

[Believeit in reply to RMontana]

Thank you very much. I will go through them.

We are a bit lost and the consultations are a bit limited on time so it’s good to be able to understand things a bit better and ask proper questions. I really appreciate you taking the time to send this.

[softwaremom00]

One product that really helped my better half with chemo is Dr. Schulzes Super Food Ultra. I think it really helped him to keep his blood count up. It is more of a food powder rather than a supplement. There is also another product that he took for white blood cells it is called Real Build. You can google it. The medications that exist for chemo have gotten a lot better. I think there are a lot of good ones for helping with the nausia.

I am not sure about where you live but M.D. Anderson in Texas will do a procedure that gets rid of liver mets, at least the big ones.

Sending hugs, love and prayers.

[Believeit in reply to softwaremom00]

thanks for the info.

[j-o-h-n]

Dr. Schulzes Super Food Ultra IS A PHONEY....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/18/2023 9:56 PM DST

[Fightinghard]

i had many soft tissue mets in lymph nodes along with some bone. Was lucky and entered a trial of the LU-177. After 2 rounds most of the soft tissue mets had either become much smaller or disappeared on the scans. Bones had not changed much.

But I had to stop the LU after round 3 because the bone cancer was progressing and other side effects.

Might discuss with your MO to see if the LU could be worth trying in your situation before you move on to other SOC options.

Best wishes

[Believeit in reply to Fightinghard]

hopefully when we meet the MO next week we will discuss LU177. We are just in shock. After scans I was afraid bone mets might have started to progress. I never considered liver mets. It’s very scary. Just have to wait for MRI next week and take it from there. Thanks for your help.