My Dad Stage 4 Pca - MO happy to settle for PSA 30, as its not 'curative'!

[kikinini]

Hello again everyone!

Posted before but do not know how to attach this to my previous post.

March 22 - PSA 1200 diagnosed metastatic hormone sensitive Pca. Mets to pelvis, ribs and nodes. Started ADT

August 22 - 1st line Docetaxel - ITU admission drug induced pnemonitis.

Chemo no longer an option.

Nov 22 - PSA 33 - ADT 3 monthly injections

Dec 22 - Dad was in significant pain - Radiotherapy to pelvis.

Mar 23 - Error between hospital & GP but we discovered Dad was given a monthly (therefore very weak ADT) dose in November, in effect allowing his testosterone to rise to normal levels and PSA jumped to 1300 and significant pain followed.

End March 23 - 3 monthly ADT injection given.

April 23 - CT scan shows new mets on sternum & both shoulders.

MAY 23 - PSA 31

Yesterday we saw the MO and I asked if we could take a more aggressive approach to treatment and try and get the PSA down even more, seeing as chemo is no longer an option. I was told "we do not want to use all our cards at once and run out of options" and "we are not looking at it in a curative way". She actually said she was happy if the PSA stayed around the 30 mark. I get it - from 1300 to 31 is a huge jump down, but 30 is still high no? Just kind of feels like they are giving up. Am I reading too much into this???

Any thoughts on what you would ask for/do in my situation? Dad has had a hellish year, reacting to almost all treatments badly. Of course I want him to get the best care out there but most importantly he wants to fight.

Thanks so much

Omer

[Tall_Allen]

What about Pluvicto or Xofigo?

[kikinini in reply to Tall_Allen]

Appreciate the quick response TA. I was told that Pluvicto here in the UK is given, once and if all other treatments have failed. I asked for that since the first appointment.

Xofigo I have not asked about but have read quite a lot about it. In your opinion, alongside ADT? Or instead of?

[Tall_Allen in reply to kikinini]

ADT is permanent.

I can only speak to the SOC in the US:

Pluvicto is permitted after chemo and either abiraterone or enzalutamide.

Xofigo is allowed for anyone who is castration-resistant and metastatic to bone without visceral metastases, and has bone pain.

[kikinini]

Ok that makes sense. One thing my Dad does have a lot of - pain. I asked them for a hormone therapy alongside ADT, and thats what was said to me. One question - is it a fact that if they add this to his ADT, they run out of options further own the line? In your opinion of course

[Concerned-wife in reply to kikinini]

it was the Stampede study in the UK which resulted in most metastatic men getting abiraterone along with ADT from the beginning…not waiting. ( or now one of the opnewer drugs). Have you asked why he isn’t getting this? I assume NICE , which is what I think UK guidelines are called, covers it.

[Concerned-wife in reply to Concerned-wife]

nice.org.uk/guidance/ta721

[kikinini in reply to Concerned-wife]

So many thoughts and ideas - much appreciated. I actually did ask why he isn't being given anything alongside the ADT and was told "didn't want to run out of options"...I also know that he can only be dealt with palliatively, but that shouldn't mean they don't throw everything at it surely? He just turned 55

Thanks also so much for the guidelines below. I will email his oncologist this weekend and attach some of that info.

[NecessarilySo]

The PSA 30 should come down further over time...give it a few months after starting the quarterly ADT.

[lcfcpolo]

They call it palliative treatment. UK here as well. Basically on the form that I left the Oncologists room with, there are 2 options, curative and palliative. The oncologist ticked palliative for me as well due to spread.

Hopefully the PSA continues to drop. It's really hard trusting the doctors when pain is involved. I'm surprised that neither Enzalutamide or Abiraterone have been added to the ADT treatment plan as well. Darolutamide seems to be an even better option but maybe the oncologist is trying to delay the use.

I wonder if you can get a second opinion. The Royal Marsden appear to offer this for approx £600. I think the local Spire and Nuffield hospital's do as well. Maybe a genetic test as well.

Good luck and what an amazing son for supporting your father.

[kikinini in reply to lcfcpolo]

Hi lcfcpolo

Thanks for your kind words. I just want to see Dad have some form of QOL.

Glad to see I was not going crazy! Everyone else is saying the same thing. We have always known it was palliative, as he is stage 4 of a very aggressive form of PCa, and also the spread. Trying to wrap my head around the "not want to run out of options too early" - is this a THING? Or is this more about funding?

Never been given a genetic test, nor ever a biopsy for a Gleason score.

The Marsden - was there 2 days ago, as Dad has his radiotherapy there - did ask this question but was told to take it up with his oncologist at St Georges Hospital - they happen to work in conjunction.

I'm going to ask Dad if he wants to get a second opinion, otherwise the option will be to push for the Darolutamide (Arasen trial right?)

Again, thanks🙏

[Benkaymel in reply to kikinini]

I'm very surprised he wasn't put on either enzalutamide or abiraterone as soon as he started ADT. This is the current SOC on the NHS. You should insist on getting one of these.

[Ramp7]

The impression I have regarding our common friend is to figure a way to manage it. I using an Adaptive approach to my condition now. My goal is to die with it not because of it. For 15 years I did what the Doctors suggested. Last year I enrolled myself into a trial with LuPSMA177. Mild results. Then I moved onto a self administered BAT protocol. Responding well. I met with Dr. Denmeade Johns Hopkins. He thought I would respond well. Well he was correct. And my QOL is much improved.

[katartizo61 in reply to Ramp7]

BAT protocol??? Could not locate information is this regard to share with my MO. Thanks for your help

[Ramp7 in reply to katartizo61]

urotoday.com/video-lectures...

[dhccpa in reply to Ramp7]

Dr. Denmeade mentions that because BAT is cheap, might be difficult to finance clinical trials for FDA approval.

[katartizo61 in reply to Ramp7]

Thank you very much

[kikinini in reply to Ramp7]

Exactly Ramp7, that is my goal too. I would love for Dad to have some semblance of a 'normal' life. The last year since diagnosis has taken a toll on him emotionally and physically. So many adverse effects to every single treatment from infections to PE.

I am intrigued by BAT protocol. Is there literature online? If you have a link would appreciate.

Thanks so much.

[kikinini in reply to Ramp7]

Ok just seen the link😊

[Grandpa4]

I think adding abiraterone makes sense. I believe survival rates are better adding it early. If they won’t pay for it the cost is not too bad. $150 a month.

[kikinini in reply to Grandpa4]

That's what I thought as well. Its so nice to come on here and get so much info and advice. There's no other place like it.

🙏🙏

[j-o-h-n]

Omer is a masculine name of Arabic origin meaning “long-lived,” “thriving,” and “flourishing.” It is a variation of the Arabic name Umar from the Arabic words umr, translating to “lifetime,” and amara, meaning “to live long” or “to flourish.” Omer is an uplifting name symbolic of living a long and fulfilling life.. MAY YOUR NAME ALSO HOLD TRUE FOR YOUR PRECIOUS DAD.

You indeed are a smart young 26 year old who dearly loves his father. God Bless.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/20/2023 3:31 PM DST

[kikinini in reply to j-o-h-n]

John I'm impressed! I did not know that. I thank you for your kind words, and hope I live up to it. At the very least, to get Dad's pain under control and create some lasting memories.

I've read many of your posts and always with a slice of humour, makes me chuckle.

Take care John

[j-o-h-n]

Always remember God is on our side...... Give my fondest regards to your dear Dad. And I was taught that the apple doesn't fall far from the tree.

BTW I'd rather have a slice of Pizza.....(you take care too)...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/20/2023 6:19 PM DST