Onward with durable remission

Posted by edmond1971 @edmond1971, Oct 12 6:41pm

I add bits of pieces of my story to various posts, but I'm organizing my story and figured this would be a good opportunity to share with the crew on the forum!

Chapter 1: The original diagnosis of Prostate Cancer (PCa) in December 2012 (Age 41) with a PSA of 3 and biopsy showed 7 out of 12 cores positive with GS of 6(3+3). Had RALP in June 2013 and pathology showed clear margins and revised GS of 7(3+4). Recovery from surgery quite well with no incontinence and with intentional action the erectile function came back to life. PSA was zero for a few years and I stopped testing in 2016.

Chapter 2: Routine physical August 2022 (Age 51) showed PSA of 9.0 and subsequent tests had PSA rising to 19.0 by October 2022. Imaging (Bone, MRI, CT) showed nothing and then a PSMA PET showed that PCa had metastasized to 25+ lymph nodes only, primarily in the iliac region, a bit in upper pelvic, and one spot on clavicle. The health team suggested a triplet treatment (ADT, ARSI, CHEMO) but with a new job starting soon, I went with ADT(Leuprolide (Eligard) via 3-month injection in Late October 2022. In January 2023 (month 3) the PSA dropped to 0.4 and we added in ARSI (daily Abiraterone Acetate (Zytiga) with Prednisone) and PSA dropped to < 0.1 (month 6) and has remained such through late September 2024. Did perform genetic testing and confirmed for BRCA2, have done many other tests and actions for skin, pancreas, liver, colon and all things are looking good with no signs of any other cancers. The side effects of ADT are real, significant, and can be managed. I do monitor my blood pressure daily and the ARSI didn’t have adverse effects.

Chapter 3: Now in October 2024 (Age 53) entering durable remission and no longer on any treatment. The health team outlook is a probable modest recovery of testosterone in 6-15 months, and likely that the PCa will come back, but when that happens, where it happens, and IF it happens are unknown, so we are moving forward with an optimistic outlook.

Future Game Plan specifics: I am doing a PSA and Testosterone test in December 2024 and February 2025 and aiming to visit the health team in early February 2025. We have reviewed the next steps for any recurrence, it likely will be a PSMA PET to see where it has come back, and some form of IMRT will be explored if the metastases are not as widespread as my original scan. Getting back on the same couplet treatment (ADT + ARSI) will be in the cards as well. Options may exist to add a PARP inhibitor such as Olaparib to the mix, and in the toolkit remains the option for some Chemotherapy (Docetaxel).

I will take all the curve balls of life, bring them on, and hopefully add to the mix a healthy dose of adventure with more energy as I crawl out of the fatigue and brain fog!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

jeffmarc | @jeffmarc | Oct 12 7:06pm

You say you had a durable remission in 2024. Did you get another PSMA pet test to see if those 25+ metastasis have actually disappeared? It’s a known fact that metastasis can grow even with an undetectable PSA (recent studies)..

I have BRCA2 also, I’ve been undetectable for 11 months now, on Darolutamide, with Zytiga I was only undetectable one month in 2 1/2 years . I only had one metastasis and had it zapped. I know that if I drop the medicine I’m on my PSA will start to rise quickly, as it has done for four remissions already. With BRCA2 your body doesn’t have the ability to correct errors in DNA, so the errors continued to pile up, it’s just a matter of time before your PSA will show it.

I had IMRT radiation 3 1/2 years after RP. That gave me another 2.5 years undetectable. But this is been going on for 15 years in January. If I were to stop drugs, I would start taking blood test monthly because I know the risk..

ADT and Zytiga will stop your cancer from growing and may shrink it a little, unlikely to totally eliminate those 25+ metastasis.

I was in a meeting Thursday with 21 Advance prostate cancer people and the moderator has BRCA2. He went on drug holidays two different times.. He says his body now lights up like a Christmas tree in a pet scan. Stopping and starting the drugs when you have BRCA2 can be dangerous to your health. It sure has been for him.

ecurb | @ecurb | Oct 12 7:44pm

Nice story of the longevity of PCa. Your still young at 53. Your so correct with brain fog/ fatigue. Your story is quite detailed. Reminds me of studying for a college exam: knowing all the details before the final exam. ASSAM tea I use in the afternoon after my nap . This caffeine level gets me thru the day/evening. Arbiterone/ Prednisone seem to be one of the best choices for ADT available today. I m 75, way way behind all the events you’ve gone thru. Just discovered mine via biopsy on 2/2/24. Take care and we’re all in this together, like it or not. We are not in charge of our destiny, I believe.

edmond1971 | @edmond1971 | Oct 13 10:31am

In reply to @jeffmarc "You say you had a durable remission in 2024. Did you get another PSMA pet test..." + (show)

Thank you JeffMarc for the excellent response and congratulations on progressing for 15 years on this unfortunate journey that we all have in common.

My health team is of the opinion that a PSMA PET at this point wouldn’t show much as the expression of PSA is required for the test itself to work. That being said, the first line of action if my PSA increases is to order a PSMA PET and that might happen in early December, or early February as I’m aiming to test every other month for now.

I must admit that with my limited (but slowly growing knowledge) of BRCA2 that I am hard pressed to convince myself that the PCa remains in remission, however I'm at a point in my life right now where I’m interested in taking a holiday from the ADT+ARSI and see if it I can muster up some improved energy levels and lose a bit of weight.

Here is my finding from the PSMA PET, in general the lights on my Christmas tree aren’t that big…

Head/Neck: Moderately PSMA avid left supraclavicular nodes measuring up to 1 cm in short axis (image 240, SUV max 6.6). Chest: Mildly avid paraesophageal node measuring 0.8 cm in short axis (image 213, SUV max 3.3). Abdomen/pelvis: Multiple FDG avid abdominal and pelvic nodes including an aortocaval node measuring up to 6 mm in short axis (image 124, SUV max 4.2), right distal common iliac nodes measuring up to 6 mm in short axis (images 103 and 100), 2 adjacent right external iliac nodes measuring up to 5 mm in short axis (image 85), 4 mm right internal iliac node (image 80) and 0.7 cm left external iliac node (image 86). No abnormal foci of uptake in the region of the prostate bed. Of note, no abnormal uptake is noted within the liver in the region of previously described 0.9 cm right hepatic lobe lesion which is not well appreciated on this noncontrast CT. Musculoskeletal: Normal

… but my heath team and I are in agreement that if the PSA rises and the PSMA PET lights up on a much smaller number of nodes (or the same amount) that we will re-evaluate, and this time around I’m now in a much better place with my new job (low/no stress, interesting, great insurance) that I’m game for taking a more aggressive approach, allowing the entire kitchen sink to be thrown at it.

A local clinical trial is underway for ADT+ARSI+PARP where the PARP is the variable, but it is only available for patients that have had no BCR treatment after RALP, so we are looking at my situation as an extension of sorts of this trial.

I’d welcome any additional thoughts or information (in this thread or links to others)

Thank you!

billfarm | @billfarm | Oct 13 10:38am

Been at this since early 22 when should I have been told I was brac1 or brac2?

edmond1971 | @edmond1971 | Oct 13 10:42am

In reply to @billfarm "Been at this since early 22 when should I have been told I was brac1 or..." + (show)

Your doctor needs to order a genetic test, I actually think there are free services that can do that as well. My health provider used this vendor "https://www.invitae.com/"

jeffmarc | @jeffmarc | Oct 13 10:53am

Be aware that the PARP inhibitor is very hard on the body. When I was on Zytiga for a couple of years and my PSA would not stay down (bouncing around from .2 to .7 and back) I asked her about going on a PARP. She said no because of its effects on the white blood cells, platelets, hemoglobin and hematocrit.

I really became aware of how hard PARP inhibitors are on the body when I was paid to do a review of the documentation of the product Akeega, before it came out. It is a combination of abiraterone and a PARP inhibitor. There were constant warnings in the documentation about problems with your blood tests and all the different items in the blood that could have poor results, which would mean that the drug would have to be stopped immediately. That sure explained why my oncologist had not wanted me to go on it yet.

Many doctors are doing PSMA tests with the PSA very low or undetectable. This is because if there are metastasis that are large, they will show up anyway. I hear about it in the advanced prostate cancer user group meetings I go to weekly. Some people are getting PSMA pet test every three months. It varies a lot.

Wish you well in your vacation from drugs. I am 76 and after being on ADT for over seven years it’s no big deal. Sure I get a hot flashes a few times a day, and the Brain fog is a pain, I’ve never really had a fatigue issue, but I keep active and walk a lot, something that beats the fatigue.

jeffmarc | @jeffmarc | Oct 13 11:02am

In reply to @billfarm "Been at this since early 22 when should I have been told I was brac1 or..." + (show)

I was not tested for genetic anomalies until 2.5 years ago, and I’ve had prostate cancer for almost 15 years now.

It actually would not have changed my treatment up until now. At least now I know that I can use a PARP inhibitor when the current drug I’m on stops working.

When they test you for genetic issues, they test for at least 30 different items, BRCA is only one of the things they look for. Other genetic issues can cause problems when using Pluvicto, so you wanna know what you genetic problems are, if any.

Be aware that you should also have a somatic test. That tests your blood or tissue for genetic problems. Some people have BRCA2 in the somatic test, but not the hereditary, genetic test. They can then still use a PARP inhibitor in that situation.