ADT not working?

[CharlieBC]

63 y/o in Colorado

2010: PSA check: elevated (around 7)

2011: PSA check: 9

Biopsy: confirmed Pca: Gleason 5 + 3

July 2011: PSA 11 before RP prostatectomy: PSA 0.2 afterward

Fall 2011: PSA began rising

February 2012: 27 rounds radiation, PSA 0

July 2014: PSA .2

November 2014: PSA .4

Wait and watch, 3, and 6 month interval PSA checks

Sept 2018: CT scan, no mets

Nov 2018: PSA 9.03

December 2018: began Lupron (6 mo)

March 2019: PSA 1.05

Dr said wait until PSA gets up to 4 for next shot (intermittent)

September 2019: PSA 1.97

March 2020: PSA 10.43 Got next Lupron shot

June 2020: PSA 4.27

Sept 2020: PSA 12.14 Dr says take another 6 month ADT shot (Lupron shortage- maybe Eligard), then check PSA in March 2021

My Dr. is apparently satisfied with the rise, then knock down of the PSA with ADT. However, it is unsettling to me to see the trend continue upward, and then ADT not get the PSA down to 2 or even lower. At what point do I switch to additional therapy (Casodex, Zytiga, Xtandi, etc.)? And which would be the most appropriate next step of the options?

[Tall_Allen]

You are castration-resistant - your PSA rose from 4.3 to 12.1 while your 6-month Lupron shot was still active.. If a bone scan/CT still shows you are non-metastatic, you can qualify for Nubeqa, Erleada, or Xtandi. If it detects metastases, you will qualify for Taxotere, Zytiga or Xtandi.

[CharlieBC in reply to Tall_Allen]

TA, Thank you for your response. I knew I was asking something that has been covered, and I appreciate you taking time to address my situation. I've been silently following along quite a while, and appreciate all of the contributors. Hopefully, I'll be able to help answer someone down the road.

[ctarleton in reply to CharlieBC]

You might also want to look at Chapter 9 of this general Guideline as you continue discussions of nearer-term Options with your doctor.

nccn.org/patients/guideline...

[CharlieBC in reply to ctarleton]

Thank you. Very Good information.

[SUPERHEAT12 in reply to CharlieBC]

You might try Dr. Kessler at Anschutz. She only sees a few patients but does research in PC.

[CharlieBC in reply to SUPERHEAT12]

Thank you. I'm in Kaiser, but will check that as an option.

[Fairway in reply to CharlieBC]

No relevant experience, CharlieBC, but wish you well!

[CharlieBC in reply to Fairway]

Thanks.

[Hidden in reply to CharlieBC]

Hi Charlie:

What direction are you headed for additional meds???

Well I think today is a game changer for me. My PSA has now jumped from 1.6 to 2.4 to 4 in 60 days. I have an appointment with my Mayo Phx MO on Monday. Currently just on Lupron, for 20 months. Feel great. Lots of exercise. What was the next step for you guys in my situation. Obviously we are very worried.

Thanks - Tom

[CharlieBC in reply to Hidden]

Still on Lupron (actually Eligard due to shortage). I'll check PSA in 6 months. If it goes up, we may add casodex to the Lupron. Since the ADT didn't knock the PSA down much, I thought my urologist would add it this last time- but I just got the Eligard shot. Biking and red wine is the only non-med input on my part.

[Horse12888 in reply to Tall_Allen]

TA: Question for you. When you say "qualify," what exactly do you mean? Can't some of those drugs be taken before the patient is CR? If not, why not?

Thanks.

[Tall_Allen in reply to Horse12888]

In the US, the FDA determines which "indications" each drug is approved for. Most insurance will not pay for a drug that is not prescribed for an FDA-approved indication. Even with FDA approval, drug plans may not cover all of them. Doctors may prescribe any FDA-approved drug, even if it is not for that indication. This is called "off-label" prescribing. The problem with off-label prescribing is that those drugs are very expensive, and most of us don't have the funds to cover the cost out of pocket.

The FDA can only approve drugs for which there is specific evidence of efficacy and safety. If research has only been done on CR men, that drug can only be approved for CR men. (there are only a couple of exceptions)

Sometimes oncologists can convince insurance to cover non-approved indications. For example, my friend who was metastatic and CRPC also had a stroke and seizures. His oncologist convinced his drug plan to cover Nubeqa (which does not cross the blood-brain barrier) for him even though it is only approved for non-metastatic CRPC.

[Horse12888 in reply to Tall_Allen]

Very interesting. My MO says there are (a few) men who, in the case of a BCR, go directly to docetaxel if they have had horrible experiences with ADT. Have you seen this?

[Tall_Allen in reply to Horse12888]

No, I haven't known anyone who has done that. If they are metastatic, docetaxel is used with ADT. I've never seen it as a substitute for ADT. My experience has been that more men are afraid of chemo than are afraid of ADT.

[Horse12888 in reply to Tall_Allen]

Yes, I'm sure it's rare. I would think it only happens where someone: a) had an experience with ADT so bad that they would never do it again under any circumstances, and b) realize that refusing all treatment was not an option either.

And now, with the advent of BAT and tE2, not to mention Axumin scans and the like, people like me (who really wanted to die a few months in) have real hope. I used to live in terror of a BCR, and now I really don't.

Thanks for all this. You're a huge help to so many of us.

[j-o-h-n in reply to Horse12888]

Holy chit Horse....you really wanted to die in a few months? Sounds like me when I lived with my ex-wife... Well Horse we are all glad that you chose the alternative and are with us. Stay around for a long time and help yourself and help us. Keep on trotting....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/10/2020 5:50 PM DST

[Horse12888 in reply to j-o-h-n]

I really enjoy your humor!!

FWIW, I feel 100% better now.

[j-o-h-n in reply to Horse12888]

Good.... Feel 100% of the time....and 100% of the other time...

Good Luck. Good Health and Good Humor.

j-o-h-n Friday 09/11/2020 10:18 PM DST - I salute our heroes.

[monte1111 in reply to j-o-h-n]

I've had a few meds that kept me trotting. Nothing like trotting towards the bathroom and saying "I can do it, I can do it."

[j-o-h-n in reply to monte1111]

Now ya talking triple crown.......in the whiner's circle

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 09/10/2020 6:40 PM DST

[Hidden in reply to Tall_Allen]

Hi TA:

You are always so helpful. I am trying to make the same decision in addition to my Lupron. Had RP in 2002, Radiation 2003, undetectable for 10 years, only Cassodex for 3 years and Lupron for 18 months. I have about 8 mets for the last 3 years. Very little growth. My last PSA 's were:

3/12/20 - 0.8

4/ 9 /20 - 0.83

5/12/20 - 1.2

6/10/20 - 1.8

6/10/20 Testosterone - 7.0

7/ 6/20 - 1.8

7/30/20 - 1.6

9/ 1.20 - 2.5

I feel great, walk, lift weights, golf and watch diet but do not know which of the Taxotere, Zytiga or Xtandi. My Mo appointment is 9/28 at Mayo Phoenix. How do you know which to take first?

Thanks,

Tom

[Tall_Allen in reply to Hidden]

I think there are a few reasons to do Taxotere first. There is a logistical reason to do Taxotere first: It is usually finished after 6 infusions, 3 weeks apart. So after 15 weeks, you are ready to move onto the next therapy. Whereas, if you do Zytiga first, it may be years before you can do the next therapy. I think the more therapies you do earlier, the better off you will be. Another reason is that the side effects of Taxotere are milder if done earlier. I think too many men put off chemo until it is too late to do much good, and the side effects are worse in a cancer-debilitated body.

[Hidden in reply to Tall_Allen]

ISH - you are correct. I heard chemo is awful.

Does it lower the PSA?

Do I stay on Lupron?

Sure appreciate your input.

[Tall_Allen in reply to Hidden]

If it works, it will be reflected in your PSA, your bone ALP, and your scans. You always stay on Lupron.

[Yambone in reply to Hidden]

I started on Lupron, and almost immediately had 6 rds Taxotere. Rounds get a little more debilitating each time, but 1-4 were a breeze. Followed up w Zytiga about 1-1/2 months after Taxotere. PSA 0.04 3 mths after chemo, still decreasing 0.02 in August. Big decrease in ALP, followup MRI. Don't hesitate to take chemo.

[Hidden in reply to Yambone]

Wow - such good news... What was your PSA history prior to Chemo? What are you taking now?

You feedback is so helpful

[Hidden in reply to Tall_Allen]

Hi TA and Stage 4 Warriors:

Well I think today is a game changer for me. My PSA has now jumped from 1.6 to 2.4 to 4 in 60 days. I have an appointment with my Mayo Phx MO on Monday. Currently just on Lupron, for 20 months. Feel great. Lots of exercise. What was the next step for you guys in my situation. Obviously we are very worried.

Thanks - Tom

[Hidden in reply to Tall_Allen]

Hi TA:

Had my video appointment with my Mayo MO today. My PSA on 9/25 was 4.0. He recommended we do scans on Wednesday and then look at options. His recommendation was Lupron + zytiga or enter into the CDK 46 trial + zytiga + Lupron. Have you heard of that trial? Always appreciate your insight.

Thanks,

Tom

[Tall_Allen in reply to Hidden]

I guess this is CYCLONE2.

clinicaltrials.gov/ct2/show...

Do you have CDK12 loss?

Why did they rule out Taxotere? UCSF is doing a trial of a CDK 46 inhibitor combined with docetaxel. I like the idea of combining it with docetaxel because it may kill cancer cells that only incur sublethal damage from the chemo. You might ask your doctor to call Rahul Aggarwal at UCSF to see how his trial is going:

clinicaltrials.gov/ct2/show...

[Hidden in reply to Tall_Allen]

TA

You are so helpful. I have scans on Wednesday and Thursday and then meet with my Mo on Thursday and I will ask him. Is taxotere and docetaxel the same

Thanks Tom

[Tall_Allen in reply to Hidden]

Yes - Taxotere is the brand name - docetaxel is generic

[Hidden in reply to Tall_Allen]

Thanks TA

[Hidden in reply to Tall_Allen]

TA:

What are your thoughts on super high testosterone therapy? If I am making a change now - would the sequence be right to try it???

Thanks Tom

[Tall_Allen in reply to Hidden]

Do you mean bipolar androgen therapy (BAT)? No, that's not for you - they only experimentally treating men with asymptomatic metastases and in an earlier post you said you were experiencing some pain.

[Hidden in reply to Tall_Allen]

I do have 10 Mets but I but I'm really lucky don't have any pain. Super T no good for me?

[Tall_Allen in reply to Hidden]

In a post 9 months ago, you wrote "It actually now is beginning to hurt a little bit. " If you had the painful metastases zapped so they are no longer painful, you are not aymptomatic. Are you talking about the crazy Liebowitz protocol or are you talking about BAT? Either way, it is dangerous for you.

[Hidden in reply to Tall_Allen]

Thanks TA

Always appreciate your input

Scans today

Tom

[Hidden in reply to Tall_Allen]

Hi TA

What is CDK12 Loss?????

Seeing MO this PM

Thanks

Tom

[Tall_Allen in reply to Hidden]

CDK12 is a gene that helps maintain genomic stability. Mutations that result in loss CDK12 function can allow cancers that are very aggressive.

[Hidden in reply to Tall_Allen]

Thanks - I don't think so

See mo in 1 hour for scan results. PSA now 4.6 as of today

[Tall_Allen in reply to Hidden]

CYCLONE 2 makes more sense if there is CDK12 loss.

[Hidden in reply to Tall_Allen]

Thanks TA

What do you think about trials

[Tall_Allen in reply to Hidden]

What trials?

[Hidden in reply to Tall_Allen]

Like Cyclone

[Tall_Allen in reply to Hidden]

I thought I had commented on that.

[Hidden in reply to Tall_Allen]

I met with my Mo tonight,. My current Mets were bigger but I had no new ones. I think what I'm going to do is start zytiga, when that fails go to taxitore, then when that fails go to Xtandi.

[Hidden]

I don’t want to confuse as TA has laid out standard protocol very well. However, there is an exception. Clinical Trials. Look for a clinical trial at a major medical school and research facility that is continuing chemotherapy with hormone therapy studies. I don’t know if there are any. Perhaps a continuation of the work done the late Robert J. Amato, DO. Or someone who uses his protocol in normal treatment.

Investigators have a wider drug use with different combinations than standard FDA approved protocols as TA wrote about. The six month trial I was in used all FDA approved drugs, but in different ways with different dosages.

Good luck,

Gourd Dancer

[Hidden in reply to Hidden]

Thanks

How did it work?