Those of you with BRCA2 germline mutation,Gleason 9-10, stage T3- T4 upon diagnosis,How long from start of ADT(Lupron) to hormone resistance

[Farmhand]

I have BRCA2 germline mutation, Initial diagnosis 2015: Gleason 9, T3bN1M0, Aggressive disease. PSA 10.

December 2020: PSA 600, T4 with extensive bone Mets.

January 2021: Started ADT for the first time, Lupron, then switched to Orgovyx. At same time started adjunct treatment with investigational drug: 3Bromo pyruvate (Dr. Young Ko’s KAT formulation)

January 2022: One year out PSA is stable at 1.0, bone scans much improved, still hormone sensitive… Have not added Zytiga yet, refused Docetaxel .

Interested in other folks experience with BRCA2 Germline mutation+ Aggressive disease and Time from Start of First line hormone deprivation therapy to resistance or Progression

[Hidden]

I cannot answer your question but was intrigued by mention of “3BP”. I was diagnosed 2 years ago and you were the first person to ever mention it. Do you think it helps? Does it have side effects? Who prescribed it and how often do you need to take it?

[Farmhand in reply to Hidden]

Yes it’s helpful and no there are no side effects.… Although it is not a miracle cure it definitely has been helpful. Works best on circulating tumor cells and lymph nodes….Therefore slows time to metastasis. Affects cancer stem cells primarily as they are most glycolytic and it stops ATP production in those cells. It is a targeted therapy as it is absorbed almost exclusively by cancer cells(Aerobic glycolysis) and not by normal cells. Does not work so great on solid tumors… Efficacy is much improved if tumors are encapsulated and it can be injected directly into the tumor via Interventional radiologist. However it is not “prescribed “at the moment it is investigational and can be used for compassionate use.We are hoping that combined with ADT it might slow time to resistance, But we don’t know yet.

We use it many ways: IV infusion, oral formulations, bladder wash, suppository. The formulation is very important and unless formulated correctly it can be dangerous.

Only safe and effective formulation

So far is KAT(dr. Young hee Ko, phd).

Have seen amazing results on our dogs with cancer….Might be due to their heightened metabolism compared to ours.

[HopingForTheBest1 in reply to Farmhand]

Sounds like your current treatment is naturopathic, not a standard of care nor clinical trial therapy?

As you stated that it is not prescribed and is investigational. Are you working with an Oncologist who got you compassionate use?

[2dee]

BRCA2Dx 2018 PSA 1303, Stage 4, mets everywhere, wasn't judged to see end of year.

Lupron since and it started to fail about 17mos ago. Added Xtandi and it lasted 15mos.

Now on Lynparza for last 3-4 mos and doing well.

2Dee

[Farmhand in reply to 2dee]

Thank you….How Tolerable is Lynparza?

[Farmhand in reply to Farmhand]

How many months were you on Lupron before you switched to Xanti?

[2dee in reply to Farmhand]

Started Lupron on 05/18 after Dx. PSA 1303 and rising a point a day. Mets throughout skeleton. No radiation, no place to radiate, whole body.Added Xtandi about 2yrs later. Worked great, It lasted about 15mo and failed. Brought rising PSA to under 2 in one MO.

Kept Lupron and added Lynparza about 3mo ago.

2Dee

[2dee in reply to Farmhand]

For ME Lynparza minimal side effects.

2Dee

[HopingForTheBest1 in reply to 2dee]

Nice response from Lynparza. I am also BRCA2+ and was on it for close to 2 years before it ran it's course for me. Most of that time my PSA was undetectable while on the drug along with Lupron/Eligard. Minimal side effects. Still on Eligard with testosterone in the single digits.

[Rodeoz15 in reply to 2dee]

No radiation?

[2dee in reply to Rodeoz15]

Can't radiate whole skeleton.

2Dee

[diamondrn]

My MO, whom I trust, says that BRCA status is not reliable. It only took 8 or 9 months on Firmagon and Zytiga ADT for my prostate cancer to become castration resistant. PSA went from 160 to 5 and is now back up to 47. We just stopped the Zytiga. It looks like Radium 223 for bone metastases is the next step.

[Farmhand in reply to diamondrn]

Thanks….Yes, I’ve also read Conflicting data on BRCA2 status and how it affects time to progression on ADT

[33Ford]

Eligard lasted about 9 months and Zytiga 7 months. Started Zytiga about 2 months after Eligard, so they failed at the same time. My PSA was at .067 then started doubling about every 2 to 3 weeks. Starting Provenge this Monday and then Lynparza. My GS was 9/10 at Dx.

[Farmhand in reply to 33Ford]

Thank you… This is very helpful. Good luck with Provenge

[HopingForTheBest1 in reply to 33Ford]

I was on Lynparza for 2 years, most of that time my PSA was undetectable until it ran its course. Minimal side effects.

[mrscruffy]

Diagnosed with BRCA2 in June of 2016, Medication is just starting to begin failing, I am taking Ostarine(body building compound) to try and further suppress My Testosterone. Anecdotal evidence shows it works. Not in panic mode yet

[Pleroma]

It took about 18 months to become castrate resistant with me - BRCA-2.

[Farmhand in reply to Pleroma]

18 months on Lupron alone, or 18 months on first and second line ADT(Zytiga/Xanti Combined with first line)?

[Pleroma in reply to Farmhand]

18 months on Lupron alone but I did do Chemo and Radiation during that time. Added Zytiga when castrate resistant. Zytiga failed after about 5 months.

[Farmhand in reply to Pleroma]

Thanks, What are you doing now for therapy?

[Pleroma in reply to Farmhand]

Just finished another session with chemo. I do have an aggressive cancer, apparently.

You can go to my profile for my treatment by treatment diary.

[Curehunter]

Dx Feb 2020, started ADT but castrate resistant after only 3 months.

[HopingForTheBest1]

By doing a Google search about 3BP an article from Science magazine back in 2016 came up. It is titled "Candidate cancer drug suspected after death of 3 patients at an alternative medicine clinic". The medication was 3BP. The German practitioner was banned from practicing.

3BP appears to be a truly experimental cancer treatment that has been studied for a number of years. Based on your profile and your posts I believe you have done your research in taking the step to try 3BP. I wish you luck and success.

We are all trying our best to grasp at that golden ring and find an effective treatment. We just don't know unless we try. We are our own best advocates.

[Farmhand in reply to HopingForTheBest1]

Yes that was an unfortunate event in Germany back then when a practitioner who is not a doctor and not qualified administered 3BP at seven times the dose that is recommended. That gave 3BP a very bad name and unfortunately because of him three people died and the path to clinical trials was set way back.As with many drugs when given at a very high dose and inappropriately can be dangerous especially IV.

[Farmhand in reply to HopingForTheBest1]

I have been using it IV, as an infusion, for 1.5 years now with no side effects other than they need to take probiotics. ….It is very effective for early stage cancers but the question is: can it be effective for late stage cancers at prolonging overall survival and progression free survival? We will see… Clinical trials start in March/April

[Farmhand in reply to HopingForTheBest1]

Oh…and one more thing…Unfortunately I don’t believe there is a golden ring to grasp! It seems as though most success might be had by treating cancer patients individually as each individual cancer often times has very different needs

[Purple-Bike]

Not castrate 16 months after dx. Gs9, BRCA2-plus, one met zapped. 10 months adt six months off no evidence of disease six weeks ago.

[Hidden]

BRCA2 positive. Diagnosed June 2016. Started with Casodex and chemo. That combination was shown to increase overall survival by at least 18 months when done initially. Casodex lasted 18 months. Moved onto Zytiga for two and a half years. Tried Lynparza and could not take the side effects. Spent six months bouncing around to other drugs. Started Jevtana two months ago. It’s working but the side effects are a little rough. Last PSA .76. Still fighting.

[j-o-h-n]

Nice Dogacycle...............

Good Luck, Good Health Good Humor.

j-o-h-n Saturday 01/08/2022 7:51 PM EST

[NotAlwaysSunshine]

My husband had 3 months before he became Hormone Resistant. He was diagnosed in July of 2019. Best of luck to you.