"Just go live your life"

[ShorePine]

Metastatic Prostate cancer diagnosed in October of 2023, PSA = 45. (Please see my Bio.) On October 7, 2024, for the first time, my PSA was <0.05, which my provider called “undetectable”. This after completing chemo and radiation therapy and on-going hormone therapy with Eligard and abiraterone.

I asked my provider what can we do now to fight the cancer which is still present in my body. They said “just go live your life”. I will certainly do that, but I still would like to know if I could do anything to fight?

[Tall_Allen]

You are already doing it. That's what Eligard+ abi does.

[pjd55d in reply to Tall_Allen]

yep -agree - that's what I do

[ShorePine in reply to Tall_Allen]

But the hormone therapy will most likely fail at some point.

It's frustrating to just sit and wait for it. I'm careful with my diet and I exercise... Still feel there should be some guidance going forward.

[Tall_Allen in reply to ShorePine]

There is guidance- do what you are doing.

[ShorePine in reply to Tall_Allen]

If I want to do something outside Standard of Care, what complementary therapy would be most likely helpful?

[Tall_Allen in reply to ShorePine]

Exercise.

[beogradjanin in reply to ShorePine]

You can see my post few days ago - My way natural complementary teraphy

[Aldo62 in reply to ShorePine]

I am at the same point where the ADT is failing. Trying BAT therapy in hopes that it will resensitize the Cancer cells. pmc.ncbi.nlm.nih.gov/articl...

[Retireddoc]

I understand your frustration. I have oligo metastatic disease and my PSA has been undetectable for 2 years since completing triple therapy at Johns Hopkins 12/22. I am off all meds.

There are no guarantees. We are all individuals and although we can use statistics and trial results to make assumptions about prognosis, we just can't be sure.

My experienced MO at Hopkins says that exercise and maintaining a reasonable BMI is what I can do for my health. Reasonable diet. Being on ADT lowers your basal metabolic rate by 25% so most people will gain weight if they aren't proactive with diet and exercise. Obesity increases overall body inflammation and is a factor in tumor growth.

Your oncologist is giving you good advice.

[Gpatwice in reply to Retireddoc]

I completed triplet therapy November 2022. Docetaxel-Lupron-Nubeqa. I’ve been undetectable since. Started vacation from Lupron three months ago but continued on Nubeqa mono therapy. I have lab work in a couple days, if PSA remains undetectable I plan to take a vacay from Nubeqa as well. How long have you been off the meds and how have your labs been.

[Retireddoc in reply to Gpatwice]

I had triple therapy 10/22-12/22 with 4 cycles of Docetaxel, 3 months of Nubeqa and one year of Lupron (first 3 month injection 10/1/22 and last 3 month injection 7/22/23. Since July 2023 I have been off all medications. My PSA went undetectable after my second chemo cycle in November of 2022 and has remained so until now (just had a repeat PSA 3 days ago <0.01).

My MO is putting me on testosterone replacement (through an endocrinologist ) because my T hasn't risen past 30. I realize this sounds controversial but he believes all aggressive clones have been killed and he can control the cancer if It comes back.

I have a lot of faith in my MO and his NP. But, each person needs to follow their own path in consultation with their treatment team.

[Gpatwice in reply to Retireddoc]

Thanks for the reply. I totally agree with being your own advocate when it comes to treatment. I have a great MO as well. The information you shared is valuable. Thanks again.

[dhccpa in reply to Retireddoc]

Good luck. Excellent result!

[NecessarilySo]

See my bio. Fight with diet. Watch for mets. If they appear, kill them.

[Kayakbob]

You may consider Provenge treatment - it works best when the tumor load is low, and yours won't get much lower! It doesn't work for everyone, but it worked for me.

[billyboy3 in reply to Kayakbob]

Tell us about your treatment please, as much detail as lossible

[Kayakbob in reply to billyboy3]

see my bio - Diagnosed 2011, still fighting! ADT & SBRT radiation, Provenge in 2013. PSA unmeasurable for1 year with continuous ADT, then ADT holiday with PSA staying around 0.5 for 6 years. After 6 year ADT holiday, PSA started to rise rapidly (2021)....then additional treatments required.

My Oncologist suggested Provenge, he stated that the study results showed that those with lower tumor load (lower PSA) showed the best response to this treatment, and since my PSA was undetectable at that time, he said 'your PSA won't get any lower'. I'm convinced that the Provenge treatment gave me years of low PSA.

[dhccpa in reply to Kayakbob]

Just had Provenge. No way to know what it does, but hopefully at least what you got out of it.

[janebob99]

You could do low-medium dose transdermal estradiol patches or gels/creams.

Prof. Wassersug has been doing this for over 20 years, as his only treatment, and his PSA has remained very low during that time. It will also help prevent osteoporosis, because it has been shown to grow bone.

[Alloy7]

I'm echoing Tall Allen-- exercise! It might seem like very generalized advice-- (Gee, that's nice, maybe I'll get around to it) but for people on this forum, it's vital. It makes a difference.

I am also investigating the estradiol patches that janebob 99 mentioned. When they tested my bone density to get a beginning baseline, I was shocked to find out that I already had osteoporosis. The ADT will only make it worse, so I'm interested in hormone replacement for the testosterone that's being suppressed.

[DrummerfightC in reply to Alloy7]

Hi, Can I ask where do you apply your patch and how often do you change it (how much dosage required). Thanks.

[Alloy7 in reply to DrummerfightC]

I haven't started the patches, so I don't know what dosage they would prescribe for me. My girlfriend is a trans woman ( male to female) and she applies two patches, twice a week. She alternates between hips and upper butt. Her patches deliver 0.1 mg/day, for each patch. That is a high dosage-- that much I know. Whether a cancer patient requires that level, I don't know.

[OuttaTime]

I thought the same way as you are and there is no cure for this cancer unless they catch it early enough is what I heard. I have had chemo and first generation hormone therapy now I am on the second generation hormone therapy, Nubeqa (darolutamide) and Lupron depot (leuprolide). I was offered pluvicto by a doctor and my other doctor said pretty much no to pluvicto. He said I did not meet the requirements for pluvicto. Still recovering from chemo after finishing it in July. So researched pluvicto and decided against it for now until things get worse I guess. We only have so many tools in the tool box don’t want to use them up all at once. If you are stable with that low of psa then you are good to go until maybe your psa starts to rise. Plus pluvicto did not have the support from those treated with it, 3 out of 5 rating one person said a 2. Not much duration and possible nasty side effects. Who knows maybe something better might come out at anytime that will be more effective. I think eating right and exercise is good medicine.

[j-o-h-n]

You should have told the doctor(s).... to reduce their fees, so you can really live....

Good Luck, Good Health and Good Humor.

j-o-h-n

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

I’ll have to remember that for my next visit!