Rising PSA … Clear PSMA SCAN

[JolleySprings]

My husband sees Dr. Rahul Aggarwal at UCSF. I’m surprised by his treatment plan.

hubby has been on Lupron & NUBEQA since April. At first it brought PSA down but now it is up to 6.5

His last PSMA SCAN was in October when PSA was 4.3

Next PSMA scan is mid January.

Aggarwal says PSA # is no longer of much value. The scans are what we will now go by.

It’s obvious The Lupron/NUBEQA isn’t working.

I asked him what would be next and he said let’s wait to see results of scan.

He has mentioned “spot” radiation. But, hubby’s decipher test (6 years ago) predicted radiation would be ineffective for his “CDK12” mutation cancer.

Liquid Biopsy also verified CDK12 mutation.

it is a Tough one!

I hate waiting! It seems it’s just giving it more time to spread!

[Tall_Allen]

What does he think of any of these trials?

healthunlocked.com/advanced...

[JolleySprings in reply to Tall_Allen]

I suppose he isn’t eligible for most of these yet bc as of last scan in October no “visible” metastasis had shown up. Also, he hasn’t had any drugs such as Zitiga or chemo. It seems crazy to have to “wait” knowing full well metastasis is coming… with a rising PSA.

[Tall_Allen in reply to JolleySprings]

You are mistaken in your belief that "metastasis is coming." They are already there. Just because you can't see them, it doesn't mean they aren't there. Unfortunately, we have no way to get rid of them all. The best we can do is manage them, hopefully for a long time.

[JolleySprings in reply to Tall_Allen]

Yes. I understand that. But, until they are “seen” often times certain treatments are not available. Many trials require one or more “solid” tumors visible on a scan.

[Tall_Allen in reply to JolleySprings]

Each trial that requires imaging has specific imaging requirements. In the past, most required that metastases be seen on a bone scan/CT. New trials use PET scans.

[GP24]

The spot radiation will be done at a dose which will also destroy CDK12 mutated cancer.

[TJGuy]

There are other directed techniques besides radiation that can be used depending where the metastases are found.Several types in fact including cryotherapy may be used.

Don't forget surgically removing them as well.

A mix and match approach might be used on various metastases depending on where they are found.

The hospital and doctors where your getting treatment currently, may or may not be able to offer them or even know the treatments are available or possible.

[Derf4223]

I hope your husband has both an MO and an RO.

[ron_bucher]

I'm curious whether chemo was in any part of the conversation with UCSF, and if not why not (I'm asking out of ignorance).

[JolleySprings in reply to ron_bucher]

He hasn’t yet… but his hasn’t metastasized yet. It’s almost like you have to wait until it “spreads” b4 they can go to “next” steps in treatment! 😳🤦‍♀️

[ron_bucher in reply to JolleySprings]

There is no way to tell conclusively that it has not yet metastasized. If he wants to treat it aggressively, he should have an oncologist who understands and supports his desire to treat it aggressively. Virtually every treatment works better the earlier it is done.

[ron_bucher in reply to JolleySprings]

A "clear" scan just means there aren't any tumors big enough to see on the scan. It usually takes a long time (months or more) for tumors to grow big enough for scans to see them.

[j-o-h-n]

FYI: Dr. Rahul Agarwal, MD. I just googled him (he liked it, east Indians are strange that way) and it appears that he has good credentials. From a website:

Research Summary

I am a Medical Oncologist within the Division of Hematology/Oncology at the University of California San Francisco. My clinical practice focuses on patients with advanced solid tumor malignancies with a particular emphasis on genitourinary malignancies including prostate, kidney, bladder, and testicular cancer. I serve as the Co-Leader for the GU Medical Oncology program at UCSF.

My research focus is on developing novel therapies and imaging modalities for patients with advanced solid tumor malignancies, with a focus on patients with advanced prostate cancer.

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/04/2024 9:04 PM EST

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

Yes. We are pleased with him except i feel he moving slower than I’d like but he knows more than i do! 😳🤣

He is very up on research etc. He is kind, attentive and very personable. We are thankful.

We live in Texas. Most all our appts are virtual. We’ve been out to SF a couple of times to see him in person.

[fast_eddie]

I've had clear axumin and pylarify scans, a year apart, yet my PSA has been slowly rising. It hit 2.8 last time. I have not been on ADT. My urologist put me on finesteride but I had to quit that due to dental issues.

[God_Loves_Me]

When a PSA is more than 10, PSMA PET has a better chance of getting a picture. Have you asked for bicalutamide,

[Bubasurf6]

I’ve been being treated by Rahul Aggarwal since 2015. I was accepted in one of the numerous trials he’s in charge of but one year after completion my PSA became detectable again I’ve had numerous PSMA SCANS all finding bone metastasis with each scan . The tumor board at UCSF were unamous that SBRT radiation would be the best treatment plan. They also added extended treatment with Lupron, Aberaterione, Prednisone. I’m now waiting on monthly bloodwork to find out what’s next. The most difficult part of this journey for me I s watching how difficult this journey is on my wife( aka my ANGLE ) She like you wants to be proactive. The waiting is very difficult for her. But both of us feel very blessed to have Dr Rahul Aggarwal guiding us through this journey. We talk with him on Zoom even though we live only a 30 minute away. He asked us if we preferred to come in for every visit or do Zoom. We chose to Zoom. We told him unless there was something from bloodwork, scans or other trials that we needed to have a face to face to discuss treatment options that we didn’t want to waste his time and our time seeing him face to face. When they found bone metastasis he wanted to see us face to face. I know the waiting is torture but it’s better to have enough information for the best decisions for treatment options. Bottom line my wife and myself wouldn’t change oncologist for anything . We’re with him as long as the trip lasts. I wish you both the best.

[JolleySprings in reply to Bubasurf6]

Thank you for your response. I read your bio. I understood your last treatment was in November. If that is correct how are you doing now? What r u doing treatment wise? Thank you!!!

[Bubasurf6]

my most recent treatment completed was in December they had found three bone Mets on a PSMA scan in January. They then started me on Lupron three month shots for nine months total and abiraterone with prednisone daily. I completed that course November 15. Still working my way through side effects. Hot pleasure, drain pain it’s getting a little better each day in the past when I’ve had my treatments and my PSA has been taken to undetectable, and my testosterone has been taken to pretty much undetectable. The treatments seem to last a year before my PSA becomes detectable, and my testosterone is back into the 400 to 600 range. In the past my PSA numbers have moved up slowly for about a year where it was time to get another PSMA scan. I’m hoping it lasts longer than that until I have to have more treatments but I’m figuring it’ll probably be between two and three years to and I’ll have other bone mats that they’ll find or something. I’ve talked with Dr. Agarwal about my thoughts and he said that’s possible that’s possible last longer he said, but just kinda be as chill as I can, and it’ll come back when it comes back. I told him of course I was hopeful it wouldn’t come back, but I didn’t have great expectations of that happening and he said he has seen it happen, but not overthink it and worry about coming back and just try live my best life when it comes back we’ll do it again. He and I jokingly now refer to it as whack-a-mole. My words not his, but he kind of nodded and agreed If you ever have a question about a treatments do you know where to find me. I think my wife seems to be more like you. She follows Health unlocked much more than I do. I try to stay away from that, and not think anymore about it than I have to which is still is every day. 👍

[JolleySprings in reply to Bubasurf6]

Yes!!!! My husband has been a healthcare Exec his entire career, YET he reads NOTHING about his s cancer. I do all the research. He like you says it bogs him down. I guess that is good bc I READ ABOUT IT OBSESSIVELY! 😩😩😩 I know way more than I want to know. And it seems I pick up much more on the negative than positive. Mainly having a CDK12 mutation.

Do you have any mutations???