Kindly suggest the most appropriate n... - Advanced Prostate...

Advanced Prostate Cancer

22,371 members28,134 posts

Kindly suggest the most appropriate next steps and questions for MO!

Justgettingitright profile image

hi all!

My dad was diagnosed in Feb2024 with metastatic prostate cancer, Gleason 8 and PSA 24. He is majorly asymptomatic. His PSA dropped to 0.16 and now has risen to 1.6 over a period of 2.5 months. He has been on hormone therapy and taking abireterone and prednisone daily. He got orchidectomy done in Feb.

He got his latest PSMA Pet scan on September 7th. The scan shows some improvement but uptake in three places (attached image with conclusion. The uro-onco has suggested either chemotherapy (docetaxel) or radiation to the three new Mets.

We are meeting MO to further discuss next steps and also planning to add dendritic cell therapy in the list of therapies to follow. Please let me know what are some of the good questions to ask and what should be the best plan. Thank you in advance for great POVs.

Written by
Justgettingitright profile image
Justgettingitright
To view profiles and participate in discussions please or .
Read more about...
27 Replies
GP24 profile image
GP24

If the radiation is done with SBRT radiation, it will have almost no side effects.

God_Loves_Me profile image
God_Loves_Me

Questions -

Does dendritic cell therapy will reduce PSA and How frequently are we planning to do SCAN compare with SCAN of Sept 7

Can I do SBRT + dendritic cell therapy + ADT + ZYTIGA OR AR ?

Personal Advice :

Start working with nephrologist for future and during treatment.

Justgettingitright profile image
Justgettingitright in reply toGod_Loves_Me

Thank you for your response. Will add the questions in the list.

Also, we are monitoring renal function and so far all reports are within normal limits.

Mgtd profile image
Mgtd in reply toJustgettingitright

Your experience maybe different than mine but I usually only get 15 to 20 minutes with the doctor so I need to keep my questions limited to the most important ones. Going in with a laundry list of questions maybe of limited value. Focus on the critical issues.

Justgettingitright profile image
Justgettingitright in reply toMgtd

Sadly we did not even get those 10 mins. Dr. Ashok Vaid said that “he won’t sit and answer questions, he will only give his opinion”.

I am sorry to say but Indian MOs are not the best to deal with. I am yet to find an empathetic one who can atleast answer some important questions about this disease, and have good bed side manners to say the least.

Mascouche profile image
Mascouche in reply toJustgettingitright

That MO is is not only a jerk but also a cruel jerk. They are not exclusive to India as I have come across people like that which I've rapidly dismissed for more humane and open minded people. Patients with something as life threatening as cancer need to be able to talk to their MO and be reassured on the path ahead, not just receive a lecture.

Xxxxyyyy_15 profile image
Xxxxyyyy_15

Hi, my dad had similar - adt quickly stopped working (psa rising) liquid biopsy showed PdL1 so he got keytruda (along with nanoknife treatment of the prostate ECT) - please note that these treatments are all done privately as health system at least here does not provide these options and especially not at such a quick turnaround - and after first infusion and treatment psa dropped to 0.23, he just got 2nd keytruda last week and new liquid biopsy done still waiting for results - conclusion if you can get liquid biopsy to determine why PSA is rising. Good luck!

Justgettingitright profile image
Justgettingitright in reply toXxxxyyyy_15

Thanks for replying. We are in India and we are getting all treatment done privately. We are getting test done to check for any mutations

Tinkudi profile image
Tinkudi in reply toXxxxyyyy_15

Does a liquid biopsy show stuff other than what a tissue biopsy shows ?

Justgettingitright profile image
Justgettingitright in reply toTinkudi

It can show mutations such as MSI-H for which keytruda is very useful.

Tinkudi profile image
Tinkudi in reply toJustgettingitright

A tissue biopsy also would show that right

Tall_Allen profile image
Tall_Allen

Docetaxel. He has systemic disease and requires systemic therapy. He might also switch from prednisone to dexamethasone. He should also get Pluvicto treatment before he gets too many non-PSMA-avid tumors. There is no evidence that playing whack-a-mole with detected metastases accomplishes anything.

Justgettingitright profile image
Justgettingitright in reply toTall_Allen

Thanks Tall_Allen . I asked about dexamethasone but MO is not keen on changing the steroid.

Also, what should be the timeline to get - chemo, dendritic therapy and pluvicto?

Tinkudi profile image
Tinkudi in reply toTall_Allen

Allen , pluvicto should be given also while one is hormone sensitive or only after ?

Tall_Allen profile image
Tall_Allen in reply toTinkudi

In India, you can get it either way.

Tinkudi profile image
Tinkudi in reply toTall_Allen

Yes. In India pluvicto is easily available but MO said we will think of that if adt and ARSi stop being effective.

Hence , am asking is that correct or it makes sense to do it earlier too , before cells become non PSMA avid - like you said.

Tall_Allen profile image
Tall_Allen in reply toTinkudi

Probably there is more survival benefit if used earlier, although there is no data from clinical trials yet. However, if he has already had ADT+ARSi for a few months, it is too late to realize any extra benefit because hormone therapy of that duration suppresses PSMA. It is also too late for docetaxel.

Tinkudi profile image
Tinkudi in reply toTall_Allen

Thanks Allen. I was just trying to understand. Will be doing dad’s tests next week so will know.

Btw , you say after few months of starting adt plus ARSi it may be late for docetaxel and pluvicto but you just told those to “justgettingitright”?

Tall_Allen profile image
Tall_Allen in reply toTinkudi

His father is mCRPC and now has PSMA-avid tumors despite abiraterone. One can only use Pluvicto and docetaxel .when ARSis have failed

Tall_Allen profile image
Tall_Allen

Here's the trial done on switching steroids - you may want to email it to him:

bjui-journals.onlinelibrary...

However, I would wait until after APCEDEN, as the stronger steroid may interfere with the immune response.

Considering he has non-PSMA-avid metastases already, I think he should do docetaxel first. He can do APCEDEN concurrently as it will bolster up his immune system, which is depleted by docetaxel.

Justgettingitright profile image
Justgettingitright in reply toTall_Allen

Tall_Allen what does non-PSMA avid metastases mean? Does it mean mutation of tumor to some other forms? I am sorry but the MO has never shed light on this aspect. He had non PSMA avid Mets in his previous scans as well. No one brought that out ever.

Tall_Allen profile image
Tall_Allen in reply toJustgettingitright

It means that not every cancer cell expresses PSMA. If a lot don't and Pluvicto is used, Pluvicto only kills the PSMA-avid cells and a few others nearby. That can leave meny cells unkilled and they can take over.

prostatecancer.news/2019/12...

Since docetaxel kills rapidly growing cancer cells regardless of PSMA expression, I'm suggesting you kill them off before Pluvicto so they don't take over.

Justgettingitright profile image
Justgettingitright in reply toTall_Allen

Thank you so much for this clarification! Il put this across to his MO. Sadly, we are yet to find an MO who is proactive & empathetic

j-o-h-n profile image
j-o-h-n

to Gotitjustright,

From me (and other members) congratulations on your becoming a mother in June to a lovely young baby. May he be a healthy and happy son who gives love to all of his family. And his name is ?????

Good Luck, Good Health and Good Humor.

j-o-h-n

Justgettingitright profile image
Justgettingitright in reply toj-o-h-n

Thanks for remembering  j-o-h-n we named him “Samay” (Hindi name) it means “Time”. Hopefully he has brought luck and time for his grandpa! Truly a blessing amidst the gloomy times.

j-o-h-n profile image
j-o-h-n in reply toJustgettingitright

youtube.com/watch?v=8tI1_Kl...

May he give his Grandpa lots and lots of time....

Good Luck, Good Health and Good Humor.

j-o-h-n

dmt1121 profile image
dmt1121

I don't know how much research you have done on your own but this is really important to understanding the disease and treatments at different stages and for different conditions. I would suggest you read "Dr. Patrick Walsh's Guide to Surviving Prostate Cancer" which is a primer that answers many questions. Dr. Walsh is an expert on PCa and was a researcher and professor at Johns Hopkins.

Beyond that, this forum is a good source of information along with other reputable site of university hospitals and those dedicated to PCa. This includes: NIH studies, The Prostate Cancer Foundation, MaleCare, Mayo Clinic, Sloan Kettering, UCSF, University of Washington among others.

Once you feel informed enough that you understand the issues, you will be able to hold a conversation with his MO and ask questions about the QOL, side effects and benefits of treatments, as well as any clinical trials that may be proposed.

Good luck.

Not what you're looking for?

You may also like...

Next steps -questions on immunotherapy

Well our roller coaster continues. In early December we began making plans to go to Germany, even...
Dalipup profile image

Advice for next steps for 82 year old dad

Good morning, I'm needing advice for my 82 year old dad. Dad has been fighting prostate for eight...
Lynsi13 profile image

Advice needed please.

Hi guys, Looking for some advice and experiences that may help.

 My Father was diagnosed with...
taylor123 profile image

My brother has advanced Prostate cancer

Hi everyone, I attached previous post about my brother. Since then he had one more PSA test...
rasher1 profile image

My brother has advanced prostate cancer

Hi everyone. I hope all of you are doing well. My brother diagnosed Aug 2022 with stage 4 prostate...
rasher1 profile image

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.