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Stopping BAT

KocoPr profile image
11 Replies

I have been on pBAT FOR 15 months with slowly rising highs on T but also slowly rising lows while on low T (ADT Cyclr).

I have no prostate and am hormone sensitive and always have been. My NADIR PSA before starting pBAT was 0.02 while on darolutamide and Orgovyx for 1 year.

Since my recent high T psa is 3.21 and ADT cycle psa is 1.3 i decided to try doing cypionate BAT so after 30 days of low T my psa was 1.3 and now at 30 day mark of high T PSA was back to 3.21 exactly as before. My plan was to do 60 days high T but recent events have changed my plans.

At the 4 week mark of high T I was waking up in abdominal agony and after walking around it would slowly clear up. Finally after 3 nights of this i went to emergency room and got diagnosed with Kidney stones and started having gout in foot.

A great book to read on Uric Acid is “drop acid” by Perlmutter David.

So during my abdominal CT without contrast found enumerable highly suspicious bone leasions in ribs, pelvic and spine.

Now this is enough to freak me out so I notified my OC and have PSMA PET scan next Monday.

From what i have been reading is that high uric acid buildup can cause calcified bone deposits that would look like bone lesions on this CT w/out contrast. Also high uric acid buildup in body can also be caused by dead cells.

I am trying to be optimistic and realistic at the same time.

i decided to shut it down now after 30 days. Today would have been my third cypionate shot at day 28. My T is probably around 1,100 and will take a few more weeks to clear.

Yesterday’s PSA was 6.36

The good news is i believe I can go back to Daro and Orgo till NADIR again or close to it the start the cypionate BAT back up.

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KocoPr
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11 Replies
NPfisherman profile image
NPfisherman

KocoPR,

Thanks for posting.... Wishing you the best of luck on Monday and with your treatments...

Sorry BAT didn't totally go your way....

Take care, Warrior....Fight on !!

DD

KocoPr profile image
KocoPr in reply toNPfisherman

Thanks buddy, if i can get back to NADIR i might try BAT again so we will see.

I am really liking a couple of treatment options in trials like SYNC T-SV102 should be starting phase 2 very soon, but don’t know locations yet.

The other is

ONC-392 in Monotherapy and in Combination of Anti-PD-1 in Advanced Solid Tumors and NSCLC (PRESERVE-001)

This if Daro stops working then i could qualify. That I hope is further down the road.

especially since i have MSH6-loss and high PD1

Ichthus316 profile image
Ichthus316

I've only been doing BAT for 5 cycles, so I'm certainly no expert, but it's my understanding that, in theory, the first few days of both hiT and loT phases can cause single and/or double strand DNA breaks, which lead to either senescence or cell death. If not cleared out, they can be used as fuel more PCa. If I recall correctly, this process is called autophagy. Are you taking anything to clear out dead and scenescent cells, such as a senolytic activator or serrapeptase?

KocoPr profile image
KocoPr in reply toIchthus316

Yes i take senolytic activator by life extension. Also I was 4 weeks into high T. You check my many posts on my BAT experience.

Ichthus316 profile image
Ichthus316

I used to take the life extension version, and I think they are an excellent company with a lot of good research behind them, but I'm always concerned about bioavailability with supplements. I noted their formula on the label and now I buy the four ingredients separately.

For the senescent cells, once a week I take liposomal versions of Quercetin (250 mg), Fisetin (750 mg) and standard versions of Theaflavin (350 mg) and Apigenin (50 mg). Overall, this is about double the recommended dose of the LE product for about the same cost.

For the dead cells, I take 120,000 SPU of serrapeptase daily for the first 5 days of each new cycle, both hiT and loT. There are no trials that I know of to support this, but both regimens are relatively inexpensive and I don't want to risk any dead or senescent cells hanging around for PCa to feed on when I've worked so hard to kill/ put them to sleep.

I've read all of your BAT posts in the past, but I fear my memory is a bit foggy. I hope and pray you have nothing of concern on your PSMA scan next week. Please keep us posted.

cujoe profile image
cujoe

Koco - Having had kidney stones myself back in 2014, I know well the pain that also sent me to the ER. My kidney stone episode was 3 years prior to my AUS implant surgery when I was not hydrating as well as I should have been - due primarily to severe incontinence (less fIuid in = less incontinence pad use and related emotional stress). I was also eating loads of high-oxalate spinach as I migrated to a WFPB diet. When I looked at plant foods that could contribute to kidney stones, spinach was at the top of every plant listing.

I was able to catch my kidney stone and have it analyzed as the most common Calcium Oxalate type. With the gout diagnosis, I guess your stones might be of the less common uric acid flavor, which can be related to high meat protein consumption. In that case, much of the information in this reply would be still be relevant for your bone health.

Even if your kidney stone was not of the Ca-Oxalate variety, I would still check that my dietary intake + any Ca supplementation is not exceeding the RDA for calcium (1). In relation to any concerns you might have over bone health, I hope that you are already aware of the important companion nutrients that direct Ca to the bones and not elsewhere; i.e., arteries, kidneys, or joints. Our old friend and food chemist, Nalakrats, first clued me in on the importance of Vit D3, Mg (~ 40% of Ca intake) and Vit K2-7 along with boron many years back. Patrick has always maintained that PCa patients should keep their Ca intake at no more than the daily RDA for adult men, which ranges from 1,000 -1,200 mg. I've since added potassium to my list of essential bone health supplements and suggest that hardly anyone on the planet is getting their daily RDA of K from diet alone.

Others here (mateobeach?) can maybe comment of the effects that rapid hormone cycling might have on bone health, but I continue to be surprised at how few people with osteo-issues are even aware of the need to supplement beyond Ca + Vit D3.

Here are some comprehensive resources for each of the nutritional components mentioned above:

Calcium - Fact Sheet for Health Professionals, NIH Office of Dietary Supplements, Updated: July 24, 2024:

ods.od.nih.gov/factsheets/C...

An update on magnesium and bone health, Biometals. 2021; 34(4): 715–736, Published online 2021 May 6:

ncbi.nlm.nih.gov/pmc/articl...

Molecular Pathways and Roles for Vitamin K2-7 as a Health-Beneficial Nutraceutical: Challenges and Opportunities, Front Pharmacol. 2022; 13: 896920, Published online 2022 Jun 14:

ncbi.nlm.nih.gov/pmc/articl...

Pivotal role of boron supplementation on bone health: A narrative review, J Trace Elem Med Biol, 2020 Dec:62:126577, Epub 2020 Jun 6:

pubmed.ncbi.nlm.nih.gov/325...

Potassium: A Frontier in Osteoporosis, Thieme Connect, Article published online: 2024-02-12 (PDF download)

thieme-connect.com/products...

* * *

(1) Here is a link to the summary of Ca and PCa from the NIH National Cancer Institutes' CAM for Professionals webpage, i.e., Prostate Cancer, Nutrition, and Dietary Supplements (PDQ®)–Health Professional Version, Updated: April 5, 2024:

cancer.gov/about-cancer/tre...

* * *

Sending good Karma for your upcoming PSMA scan results. As with me, it sounds like you have been a "good responder" to SOC in the past, so that should give you a back-up plan if you decide to abandon BAT for the time being. Best of luck on Monday and many thanks for the share. Our BAT community stays well-informed due to pioneering patients like you.

Grazie - Capt'n cujoe

KocoPr profile image
KocoPr in reply tocujoe

Man that is some good info. I never sup with calcium and haven’t used boron except in the mineral supplements from seeking health years ago. I need to get me some more. I belei get enough magnesium and potassium in my daily electrolytes drink. I will recheck the numbers. And i will visit those links and save them in a new folder for reference.

Thank buddy on the psma wishes. I suspect bone mets as my psa doubled from 3.21 to 6.3 in one week. I’ll deal with it with diligence.

Mascouche profile image
Mascouche

I too have suffered from kidney stones which I am pretty sure came from taking calcium supplements that my MO prescribed me when I was taking abiraterone.

After a doctor removed a stone of 11mm, a scan revealed that I had one of 4mm in my right kidney but that was not causing me pain yet.

I stopped supplementing in calcium and I began to start every day with a glass of water in which I put 2 soup spoons of apple cider vinegar and 2 soup spoons of lemon juice. Then I wait an hour or two before having breakfast because that drink removes stomach acid needed to digest food.

A couple months later I had another scan and the 4mm stone was nowhere to be found.

I no longer take the drink everyday but I try to take it at least twice a week to prevent stones from forming.

So if you want to reduce the uric acid in your body, you might want to try this easy and natural approach.

KocoPr profile image
KocoPr in reply toMascouche

Yes great suggestion on the apple cider vinegar. I have been drinking the lemon juice water mix daily since diagnosis of kidney stones.

My one stone was 4mm and it seems gone, no more pain. An 11mm stone .43 inches YIKES! That’s huge. I consider myself lucky my little 4mm stone was obstructing . I think i got lucky inthat regards and lucky the CT scan alerted the ER nurse about possible bone lesions.

Mascouche profile image
Mascouche in reply toKocoPr

I remember my dad having a kidney stone in the 70's and he had gotten surgery to remove it the day after the stone was discovered.

Health care has gotten much slower since as it took 3 months between my first "episode" with that 11mm stone in Feb 2022 and the moment they finally removed it in late March or early April 2022 (memory is fuzzy due to ADT). Some "episodes/attacks" lasted over 7 hours in agony before subsiding until the next one. Over those 3 months, I must have gotten over a dozen such "episodes" and so many visits to the emergency. At times I almost wished for an early death to put me out of my misery.

It's crazy that despite all the progress since the 70's, we are actually worse off in that domain because of the slowness of the system. Today's approach with lasers may not leave the scars that the surgery in the 70's did but I would have gladly chosen the scar over the agony. It felt like I gave birth 17 times in 3 months. That's inhumane.

KocoPr profile image
KocoPr

you should read this book on uric acid. It’s called “drop acid”. And well written.

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