So, I am a G9, I had an RP, radiation, and am on Lupron(6+ years).
After surgery, the only thing that wasn't positive was bladder neck invasion.
My question: For G8 and above does anyone know what the average time to castrate resistant is? Or can you tell me where I could find that info?
I don't really know, but my husband is on a similar path. G9, positive node, positive margins, bladder neck invasion, ADT and radiation. 5 1/2 years after surgery and still castrate sensitive. We have a friend who's still castrate sensitive after about 8 years, and another who became resistant after only 2. I'm not sure if there is any rhyme or reason.
Good luck to you. Hoping I get similarly
After 6+ years I would say your doing great. If you have not been on any other ADT drugs, that's fantastic.
Do a little dance and relax.
They say it's 17-24 months to castrate resistance. So you're doing fantastic.
I just passed 24 months mark since diagnose and starting ADT. I have some indications that I may had been partially castrate resistant from the get-go. But I'm still on the first line ADT only.
Yes henukit. That's the time line our PC specialist told me we could expect.... roughly 14 -17 months before a breakthrough but you're the first person I know who has heard similar. I guess everyone is different.
Alephnull's profile is very similar to my husband's background except my husband was diagnosed in late 2015. He has only been on Lupron for a year after a PSMA in Jan 2019 showed numerous areas of metastases. He now has had 4 PSA's that have given undetectable readings.
You and other's like you are living proof that adrogen independent state can be delayed for 5 ,10 or even 20 years.
It proves those doctors wrong who keep singing the old song that everyone will become androgen independent within 2 to 3 years.. Plain fear-mongering ...
I am in a somewhat similar situation, though I am no longer on ADT. I was diagnosed in July 2012 with Gleason 9 PCa which had metastasized to my bladder and pelvic lymph nodes. I started ADT and had external beam radiation. My PSA dropped to undetectable and I stopped the ADT (Lupron and Casodex) in October 2014. Since then my PSA slowly rose to 0.2 and has stayed there ever since. It just goes to show there are some cases where people not only stay castrate sensitive for years, but also enter long term remissions.
Smroush, your cancer story is quite remarkable!
I started ADT at the end of last year (end of Nov. 2019) and Abiraterone (Zytiga) middle of February 2020.
May I ask you a few questions? What did you do in these years (after Oct. 2014) with regard to:
1. Exercise (e.g. which kind of exercise and how often)?
2. Nutrition (which kind of diet: e.g. red meat, white meat, no meat, low carb, no carb, mediterranean diet, vegetarian diet, …)?
3. Supplements (if yes, which)?
4. Medication(s) (such as Metformin, ...)?
5. Are there any other elements for your success?
Thank you very, very much in advance.
With best regards Franz
Here answers to your questions - the numbers below match your's above:
1. I exercise a lot, especially fitness bike riding. I ride 12 to 13 miles, 5 to 6 days a week, for an annual total of around 3000 miles. In addition, I do some indoor exercises 4 to 5 days a week that include some light lifting with dumbbells, some core exercises, some lower back exercises and some rotator cuff shoulder exercises - about a 1/2 hour per session.
2. I am on a 99% vegan diet. I also emphasize foods reputed to have some anticancer properties, for example, onions, garlic, cruciferous vegetables, green tea, pomegranate, flax meal, walnuts, apples, capers, and several spices (turmeric, Mexican oregano, dried parsley, rosemary, thyme).
3. Supplements - zinc, turmeric and melatonin (at bedtime).
4. No prescription meds for cancer (I use an asthma inhaler before bike rides).
5. I have done much better than either my doctors or I expected at the beginning. There is no way to really tell why, though I like to think that my exercise and diet has helped...
Best of luck to you!
G9 here. Surgery 2006, radiation 2012, on ADT for 40% of the time since 2006, currently hormone sensitive, on enzalutamide monotherapy now and last four years with slight rise in psa to 0.3 and reassess in four months. Possible PSMA scan, perhaps return to ADT, perhaps oligometastatic treatment after scan.
Tarhoosier, also your story is quite remarkable!
I started ADT at the end of last year (Nov. 2019) and Abiraterone (Zytiga) middle of February 2020.
May I ask you a few questions? What did you do in the last 4 years with regard to:
1. Exercise (e.g. which kind of exercise and how often)?
2. Nutrition (which kind of diet: e.g. red meat, white meat, no meat, low carb, no carb, mediterranean diet, vegetarian diet, …)?
3. Supplements (if yes, which)?
4. Medication(s) (such as Metformin, ...)?
5. Are there any other elements for your success?
Thank you very, very much in advance.
With best regards Franz
One of my oncologists is Mark Scholz in Marina Del Rey. He told me a year or so ago that about half of men lose it after about 10 years of ADT.
Alephnull, congratulations also from my side - quite remarkable!
I started ADT at the end of November last year (Nov. 2019) and Abiraterone (Zytiga) middle of February 2020. Therefore, I´m very interested to remain "castrate sensitive" as long as possible (ideally also 6+ years). May I ask you a few question?
What did you do in these 6 1/2 years with regard to:
1. Exercise (e.g. which kind of exercise and how often)?
2. Nutrition (which kind of diet: e.g. red meat, white meat, no meat, low carb, no carb, mediterranean diet, vegetarian diet, …)?
3. Supplements (if yes, which)?
4. Medication(s) (such as Metformin, ...)?
5. Are there any other elements for your success?
Thank you very, very much in advance.
With best regards Franz
I'll be very honest. I'm a slug.
1. Exercise (e.g. which kind of exercise and how often)?
I try to get out and walk, I do not go to a gym. Yard work, house chores.
2. Nutrition (which kind of diet: e.g. red meat, white meat, no meat, low carb, no carb, mediterranean diet, vegetarian diet, …)?
This is where I have failed miserably. About 3 months ago I went mostly vegan. But for the first 6+ years I was a pig, I ate what I wanted when I wanted, there was no holding back.
Plus, I decided that having been a lifelong non-drinker, I'd start trying different distilled beverages.
3. Supplements (if yes, which)?
This, I actually do well. 3 or 4 times the suggested amounts of Vit D and A, A high quality multi vitamin, something called SAMe, turmeric, Calcium lactate 5 times the suggested
4. Medication(s) (such as Metformin, ...)?
Except for Lupron and the occasional Ibuprofen that's it.
5. Are there any other elements for your success?
You asked this, so here goes. I have a deep and abiding faith in Jesus Christ. I will leave this earth some day, but until He calls me home, I'm here to stay.
Did You forget to mention the chocolate chip ice cream (two scoops)?
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 05/15/2020 6:21 PM DST
Your are on the same trajectory that I took. I was about 6 years before the PSA started rising despite the ADT. There's no magic number of years. Watch your PSA at least quarterly and, when it accelerates and hits 2, insist on scans. (My scans at PSA= 2 showed three mets that could be treated locally, to no avail I add).
Tallguy2, also your cancer story is quite remarkable!
I started ADT at the end of last year (end of Nov. 2019) and Abiraterone (Zytiga) middle of February 2020.
May I ask you a few questions? What did you do in these years, before your PSA started rising despite the ADT, with regard to:
1. Exercise (e.g. which kind of exercise and how often)?
2. Nutrition (which kind of diet: e.g. red meat, white meat, no meat, low carb, no carb, mediterranean diet, vegetarian diet, …)?
3. Supplements (if yes, which)?
4. Medication(s) (such as Metformin, ...)?
5. Are there any other elements for your success?
Thank you very, very much in advance.
With best regards Franz
Well, lots of treatments and scans after becoming castrate resistant. You can see this in my profile.
Before that:
Exercise: Elliptical machine 4 times a week, fairly intense; swimming last 3 years until COVID-19.
Nutrition: “normal” diet prior to castrate resistance.
Supplements: Prosteon (Costco equivalent) for bone health. Fish oil. Men’s vitamin and Vitamin D-3. Glucosamine Chondroitin. Probiotics.
(Some on this site will say these are all worthless. Maybe so. But I take them anyway.)
Medications: none before castrate-resistance except LupronEligard.
Other elements: none that I can think of.
To be clear, after castrate resistance discovered 2 years ago: chemo, another round of radiation, Provenge, and now a phase II clinical trial involving abiraterone and apalutamide.
There is no cure for Gleason 9 metastatic PC. But I am confident in my care team and in the research underway to develop new systemic therapies.
Be well!
If this has any value at this point: Exercise, decreasing amount. Biking occasionally. Home repair exercise, some walking, though now diminished due to my partner losing ability to walk far.
I changed my diet to a mediterranean low fat diet for years but have recently moved away from it to my earlier American diet. Still low fat or no fat dairy, low fat meats, seafood and such.
Vit D as I was seriously deficient at diagnosis. I require 12,000 i. u. perday to reach good level of D. I just do not metabolize normally. D supplement is for general good health-immune, bone and everything. I tried metformin and the G. I. issues finally drove me away. Statins, started with simvastatin and moved to atorvastatin to reduce cholesterol from "good" to "ideal" and also as possible PCa consideration.
I have long since decided that I will never know if anything I do will make a difference. Impossible to prove.
You did not ask: Biggest difference for me is to find the very BEST doctor I can find and afford, no matter how far or how much money. One I can trust, and then comply with him. I am lucky to be able to do so.
Best doctor, I'd love that! But I live in Topeka, Kansas (not Illinois)
My Onco used to practice with KU Med in KC, but he has turned out to not be very aggressive with treatment.
Well, I got to 8 years. I am now on Orgovyx and Xtandi. The first 6 weeks on Xtandi brought my PSA down to just 0.09. That's my lowest number ever.
Rapid PSA 2 years after RP surgey
PSA rising after 2 years on Eligard...options?
2 years today
ADT for almost 2 years
6 weeks after radiation my PSA is still rising
