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Advanced Prostate Cancer

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Very Informative Podcast

Schwah profile image
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m.soundcloud.com/prostate-o...

This podcast was done by Mark Scholz (my oncologist from Prostate Oncology Specialists). Very worthwhile information. He discusses off label uses. Some here oppose that but Scholz was using Taxotere long before it was approved by FDA. He was also combining zytega with lupron long before that early combination was shown to reduce deaths by over 40%. The main theme being drugs that are found useful to one stage may be also helpful at earlier stages. I’d welcome your comments.

Schwah

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Schwah
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LearnAll profile image
LearnAll

Thanks Schwah....Dr Mark Sholtz is among most honorable Oncologists in my top 10 great ones...other are Dr Charles Myers, Dr. Oliver Sartor, Dr Laurence Klotz, Dr Leslie Castello and others.

Schwah profile image
Schwah in reply toLearnAll

Just looked at your history. I too am in a vacation from meds. My primary method of determining if and when to go back on is the ucla psma scan. I go Thursday for my third test. First two were negative. What scans are you doing if any ? And who’s your primary MO?

Schwah

LearnAll profile image
LearnAll in reply toSchwah

I have not done any scans yet. I monitor PCa with the help of a dozen or so of various biomarkers along with performance status and any pain. I never had any bone pain even when my PSA was 830 . In USA, monitoring with PSMA Ga64 PET is a luxury. I had booking in March for the same scan In India but pandemic just cancelled all flights. I work full time and that also comes in the way to travel where these scans are done I think monitoring with PSMA Ga68 is most accurate way.... like you are doing . For me logistically its not possible so I have to use biomarkers' way.

Right now, all biomarkers are in good place except testosterone moving up fast and PSA has started slowly moving upwards..still 2.3. ALP is still slowly moving down and is 49. I take a composite picture and make conclusions when to end off cycle. My MO is informed at every step and I have two oncology consultants in India who give me their opinion online based on data I send them. I keep a close eye on my performance status..besides day to day physical activity, I should be able to complete 5 mile walk every single day. Any decline in physical activity or any type of urinary symptom is a warning sign for me.

TEBozo profile image
TEBozo in reply toSchwah

This string is great since we all seem to have a common denominator in Prostate Oncology Specialists. Richard Lam is my doc and I went to him after RP and getting ready for IMRT. Richard put me on Lupron and Zytiga/Prednisone in March of 2019 and I am done at the end of September 2020. All of my blood work has been predictable according to Dr. Lam and he claims to have many patients with my numbers that have not had to have further treatment. My urologist at UTSW in Dallas was not in favor of the Zytiga but I wanted the most aggressive treatment possible. Aside from losing my body hair and having my balls shrink, I have done pretty well. Went on a drug call Wellbutrin that has worked well to combat mood swings and, although I am walking 2 miles per day, I have gained 25 pounds. I am 6’5” so it is evenly distributed but I am ready to get back some T. Doc Lam says that I can take testosterone producing supplements and that he is not opposed to giving my body a short term jump start of testosterone once he sees how my body reacts to not have its own for 18 months. From Dr. Scholz’ book:

“There is no doubt that Zytiga is potent and induces cancer remissions even after Lupron stops working. Treatments effective in advanced cancer generally prove to be even more effective against earlier stage disease. This logic is so simple one might wonder why doctors in academia feel the need to perform studies to prove it. The real reason comes back to cost. There is one potential argument against using the most active agents for earlier stage disease: the idea that there may be a benefit to holding treatment in reserve to serve as a backup in case standard treatment fails. Problem with this logic is that using effective therapy as a back up plan result in lower cure rate. The battle against life threatening cancer should be viewed as an all-out war. Delaying effective treatment merely gives the cancer more time to develop resistance. Results are best with immediate, maximal therapy.”

Sorry, I had to share this. I have a copy of this excerpt in my top desk drawer.

TEBozo profile image
TEBozo in reply toSchwah

At what intervals have you had the scans? Why the scans if you PSA is zero?

Schwah profile image
Schwah in reply toTEBozo

I went on a drug vacation about a year ago with .0 2 PSA. I still have 60% of the prostate (I did a focal Chryo treatment 8 years ago) so I knew my PSA would go up due to healthy prostate tissue even if my cancer was not progressing. Therefore imaging will be my best method to determine if and when I need to go back on medication. This will be my 3rd PSMA test at ucla. First two were negative. Last one was with a 2.0 psa six months ago. Now I’m up to 3.4 so I’m not wildly optimistic about another good test. I’ll know Friday. Hoping for the best but preparing mentally for the worst including going back on meds.

Schwah

6357axbz profile image
6357axbz in reply toSchwah

Good luck. Do they tell you right away or do they just give you the CD and you have to wait some days for the report?

Schwah profile image
Schwah in reply to6357axbz

My Dr at UCLA For my PSMA TEST yesterday was the head of the radiological department. What a nice guy. DR. Czernin. Anyway he called me with my preliminary result about an hour after I left. All clear. No sign of cancer. I enlarged lymph nodes. No change from my last test. Great news! Now why is my PSA going up the last 6 months? 2.0/2.4/2.9/3.4. I did have 60% of a supposed health prostate that can produce psa. Should I do some other type of scan test? Dr. Czernin Did not think so. He said the PSMA test includes a pet CT scan that should show any non-PSA avid lesions. Do I restart my meds after a year on vacation Based solely on the rising PSA? Or do I just continue to monitor my PSA to see if it stabilizes?These are the questions I will be asking my doctors in the coming days.

Schwah.

6357axbz profile image
6357axbz in reply toSchwah

Good news!

I interviewed with Dr Czernin prior to my scan. Did you receive your report yet? If so was there anything under “Oncologic Findings” ?

Schwah profile image
Schwah in reply to6357axbz

No full report yet but based upon his verbal preliminary report , there was no sign of an cancer so I’m guessing (and praying) there will be nothing u see “Oncologic Findings”. Other than perhaps some note of old scaring from previous SBRT to my 3 mets. Hey I’m glad to hear you finally decided to go with the Zytega. Great decision. I’m not happy to hear you’ve put in weight. Lower BMI is definitely associated with better outcomes. I’ve eliminated all beef, pork and chicken from my diet and 75% of any milk products. I can’t seem to stop sugar intake tho. I try and not eat from 8pm to noon the next day which helps with my weight and intermittent fasting also seems to Improve the immune system.

6357axbz profile image
6357axbz in reply toSchwah

Started zytiga in April 2019. But no, I have not put on weight. Where did you get that info?

Schwah profile image
Schwah in reply to6357axbz

I saw a picture. Lol. No just kidding. Sorry. I get confused. I’m having a number of simultaneous conversations and they get mixed up.

Schwah

6357axbz profile image
6357axbz in reply toSchwah

No worries

TEBozo profile image
TEBozo in reply toSchwah

We'll be praying for you. Keep us advised please?

Schwah profile image
Schwah in reply toTEBozo

My Dr at UCLA For my PSMA TEST yesterday was the head of the radiological department. What a nice guy. DR. Czernin. Anyway he called me with my preliminary result about an hour after I left. All clear. No sign of cancer. I enlarged lymph nodes. No change from my last test. Great news! Now why is my PSA going up the last 6 months? 2.0/2.4/2.9/3.4. I did have 60% of a supposed health prostate that can produce psa. Should I do some other type of scan test? Dr. Czernin Did not think so. He said the PSMA test includes a pet CT scan that should show any non-PSA avid lesions. Do I restart my meds after a year on vacation Based solely on the rising PSA? Or do I just continue to monitor my PSA to see if it stabilizes?These are the questions I will be asking my doctors in the coming days.

Schwah.

At the end of the podcast he speaks about leukine as a means of extending the time after RP before BCR. Anybody having more info into this?

Magnus1964 profile image
Magnus1964

Thanks for sharing This. Terrific.

TEBozo profile image
TEBozo

Hell no! Why not continue to scan every 3-6 months? These meds are horrible.

Schwah profile image
Schwah

That’s the plan right now unless my PSA really spikes north of 5. Scholz says no meds yet but monitor. I feel great!

Schwah.

Thanks for the link. And for the new knowledge about the Prostate Pros Podcast. I LOVE Scholz's videos: youtube.com/channel/UCPYrfT... .

TEBozo profile image
TEBozo

17/18 months of ADT and I am ready to stop and get a big shot of T. I am emotionally spent.

Schwah profile image
Schwah

Yea it feels great to get off that.

Schwah

TEBozo profile image
TEBozo in reply toSchwah

I certainly hope so 778 T to ZERO

Schwah profile image
Schwah

I went from zero to 159. And happy to be there lol

Schwah

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