Advanced Prostate Cancer
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Latest PSA doubled for 3rd month- but stopped ADT 03/31/2017

Hey gang,

Just had my monthly PSA result and it's at 1.3 with T at 146. Previous results: 0.1(nadir) for two months then 0.2, 0.5(T at 86) on 12/29/17

I had 15 chemos in 2015 and ADT(Lupron/Casodex) for 30 months - with Metformin 500mg 2x/day, supplements and exercise. GL7(4+3), PSA 840 at Dx. Mets to only L ureter lymph nodes. Surgery was ruled out. I opted out of radiation.

I found this IADT presentation:

grandroundsinurology.com/wp...

So, I spoke with MedOnc about stopping the ADT and going on Holiday and it has taken 10 months for the T and PSA to tick up. The slide above says there is no data yet about pts on CHAARTED trial and IADT

"No data yet on IHT after upfront chemo

"

And the article had varying points to restart the ADT - upwards of PSA 15.

What do you guys think? I know I would freak if I let the PSA get to 15, but would a 2 be too soon. I emailed my MedOnc the results and he hasn't responded to my query on when to reinstitute.

Thanks guys

Randy

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My personal and pretty uninformed advice is...keep PSA as low as possible as long as possible, but -obviously - "holidays" are taken, and only your physician and you should decide. Good that you know what most or some protocols are... I'd research some more if you have time. Call you oncologisy and insist on an answer - act up! Was your nadir after radiation? No, you said it was FROM adt only...that's incredible!

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Just because one doctor ruled out surgery doesn't mean you cant seek another opinion. My advice is go after it while you have it weak and you are strong enough to throw everything at it you can. You get one shot at this and waiting for it to spread then experimenting with treatments is not a chance i would personally want to take. You have some affected lymph nodes, having surgery could possibly cure you. It will also get rid of millions if not billions of prostate cancer cells and the first that could become resistant to HT.

You probably are very fond of your doctor and I'm sure he or she is great but I also think that is something people need to be careful of. We trust they are giving us the best care possible however they are only giving us the care they know. Its very easy to feel you are betraying them because of the loyalty and friendship that gets developed. With aggressive disease you need a doctor willing to give aggressive treatment. A doctor who thinks outside the normal prostate cancer treatment box. When looking at this site the guys who went that route seem to be fairing the best. Even if your not cured it can add years to your life.

Ron

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Thank you for your thoughtful response. I was told that surgery on the ureter lymph node chain would entail a great chance of severing the ureter. If the PSA gets up significantly higher, MedOnc said he would do a scan if a second cycle of ADT proved futile. I also said that I would be amenable to another cycle of Taxotere or Jevtana - I would want a systemic rather than a specific, local approach

MedOnc had asked the Tumor board about more than 6 chemos(PSA was still in teens) in mid-2015 and no one would agree - so he left it up to me to do 9 more.

Thank you again and my best to you

Randy

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I should also mention I was told by 5 different doctors I was inoperable because of pelvic and abdominal nodes involved. That includes one from a major cancer treatment hospital. I gave it one last chance and found a surgeon that would do it making no guarantees or promises. Prostate out and 42 nodes removed and my scans are currently at no evidence of disease with an undetectable PSA.

Never give up

Ron

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Dayatatime---just gave you the formula. Many surgeons say they cannot do removal of Prostate and Lymph nodes after radiation---that is bull. My surgeon can and will in most cases. Give you an idea as to aggressiveness---after my Surgery, which was a 50-50 because of my age---but the Surgeon did not know how fit I was--actually---walked out of the hospital 26 hours after surgery. Broke all records. I had 22 months of Undetectable PSA's using what I call an ADT-5 program---post surgery my PSA was 7.4--like I did not even have surgery--the cancer got out into the blood---but we got the mother load--and attacked the cancer in the blood, as it had not landed--took 2 months to get to zero PSA---22 months later, on vacation---first month is this week with PSA and T being checked.

Uro, MO, and myself agreed---now this is important---that if PSA comes back---if it reaches 1.0---we go back on the drugs. We do not plan to let this pathology escape the confines of where ever it is. Am I nervous---yes!

Nalakrats

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I am on my 25th and last month of ADT. I had a PSA of 60 in December 2015. 10 of 12 biopsy cores were 4+5 G9, one was 3+4; however, my scans were clean except for immediate surrounding tissue. My urologist, a surgeon, suggested Proton therapy because the cancer had spread outside the prostate to surrounding tissue, so even if he removed it surgically I would still need radiation to clean it up. He gave me my first 3-month Lupron shot on the spot and a 30-day script for Casodex. Five months later my PSA was 0.43, my prostate volume was less than half of what it was in Dec. 2015, so I started 44 sessions of Proton therapy. I have been on monthly shots of Trelstar IM since because I have been able to tolerate that a little better than 3-month Lupron shots. My PSA has been at 0.03 tested every 4 months since. My RO would prefer I continue ADT another 6 months, but agrees that the benefits of an additional 6 months may not outweigh the side affects I been having.

I've had a hard time on ADT. It's not the death of Mr. Happy or his pitiful replacement, or that my boobs would be the envy of half the girls I dated in high school, or the hot flashes, or cold chills, or lack of energy- make that fatigue. It is the cognitive impairment that bothers me the most. I may have never been the sharpest tool in the shed, but only I know just how much I've been affected. I am more afraid of dementia than I am of PC.

I may very well change my tune if my PSA spikes after a few months of being off ADT, but for now I am just hoping that the fog clears from my head and I can be me again.

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Hi jetlagged, that last sentence sounds exactly like i could have written it. Ive been in the fog for 7 years. I too am not the sharpest tool in the shed but i used to persevere through shear determination. I lost alot of that determination and it gets worse every year. Anything technical i need to read seems to bounce of my brain. If you know what i mean. Ive been trying to learn blockchain and crypto currencies and it just seems to be a futile experience. But im alive! Good luck.

Thomas

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I stopped Lupron in December after 19 mos. I realized a couple days ago that I am starting to feel like my old normal self, both the good parts; energy and focus coming back, and the

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lousy ones: the tension and distraction that accompany my returning libido. Didn't miss that.

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Back in 2015 they would not operate if the cancer had spread to the lymph nodes. However that has changed. About two years ago They found my cancer. Unfortunately they also found it in the lymph nodes. I had to argue with the surgeon to operate. Finally convinced him to operate. Now the current theory is that there is significant advantages for removing the primary source of cancer even if it had metastasized. You may want to go back and see if now they will operate.

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You might discuss with your Medical Oncologist the significance of T at 86 and stopped hormonal injections and now at 146. It is always nice to recover T, however, my goal was less than 5 during and after a six month chemo trial. Six years later when I stopped Lupron, my T was still less than 5. Now 14 years out from Stage 4, my PSA is still undetectable and T averages 500 only because I use 4 mg of Androgel twice a week and have since a year after stopped Lupron. My understanding is that in your case T is feeding the cancer.

Me, with a Gleason 7 (4+3), my primary treatment was 117 Palladium seeds and 25 courses of IMRT. Within the year, my PSA shot up and I had two mets to the spine and one node suspected. My guy, told me that regardless of primary treatment, micro-metastates was already circulating in the vascular and lymphatic systems; it was too late upon initial diagnosis of PCa.

Where are you located? Seems to me that whether to remove the Prostate or any other primary treatment before palliative treatment depends sadly on your locale. I wish you the best in kicking this bastard.

Gourd Dancer

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Praying for you that getting back on ADT will work.

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