Stopping Casodex before stopping Lupron - Advanced Prostate...

Advanced Prostate Cancer
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Stopping Casodex before stopping Lupron

SooHwa99
SooHwa99

I am on day 30/34 of IMRT Salvage Radiation. I started Bicalutimide just prior to starting Leuprolide Acetate back in November. I have tolerated the ADT treatment fairly well with minimal side effects. A Decipher test was performed midway through this per my request and my Decipher score came back 0.71.

Prior to this my RO and I had had discussions about a 4 month run vs.a 6 month course. Since my Decipher puts me a high risk for metastasis/death within 5 years we decided it would be prudent to do a 6 month run of ADT as long as I was tolerating it ok which I am.

I messaged her that I had no more Casodex refills on the prescription and she stated that "the convention has been to prescribe the Casodex for only 4 months irrespective of length of hormone therapy (2 months before RT, 2 months during RT)" I was not aware of the issue of stopping Casodex at this particular juncture.

Thoughts? I cannot seem to find much data as it relates to stopping Casodex, but continuing on with Lupron. In January I was <0.03, which the lab at the Hospital in which I am being treated is considered undetectable.

Also, I had asked about checking my Testosterone level as I would like to have an idea what my nadir is prior to stopping ADT in two months. My last Testosterone level was 431 on October 9th, 2019 prior to starting ADT. Her response was, "Also, I don't believe there is value in obtaining the testosterone right now. The hormone therapy is medical castration and hence will bring your testosterone down. In addition, your PSA has responded appropriately."

I actually would like to know what my nadir is, as some of the research I have done shows a low Testosterone of <0.7 is "predictive of improved cause-specific survival and prolonged time to hormone resistance."

Thank you very kindly for all of your wisdom. I greatly appreciate it!

42 Replies
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This is a little out of the box, but if it were me, I’d add Zytega and prednisone and go a little longer like a year. Beat the beast into submission early while it’s weaker. I’m pretty sure my MO would Recommend that in your situation but he’s pretty aggressive. Keep in mind that Zytega was originally only used for castrate resistant men. Then the studies came out that if used earlier for hormone sensitive men along with adt, it prolonged life by over 40%. That was considered the biggest game changer in decades for PC treatment. Logic dictates that even earlier use for high risk men like yourself , could help even more. Most of the guys here will tell you (including me) that the side affects by adding Zytega, are usually minimal given that the ADT already chemically castrates you. I’m not a dr but if your MO disagrees you may want a second opinion from mine. Let us know.

Schwah

SooHwa99
SooHwa99 in reply to Schwah

Would your MO continue with the Lupron and Casodex with Zytega/Prednisone?

Thank for you amazing response. I greatly appreciate it.

Schwah
Schwah in reply to SooHwa99

I am only speculating so I do not know what he’d recommend but I don’t think

He’d keep you on Casodex with adt and Zytega too.

Schwah

mklc
mklc in reply to Schwah

Can you let me know what study regarding taking Z & P early?

So I can discuss with my MO.

Many thanks.

SooHwa99
SooHwa99 in reply to mklc

This might be the study he is referring to...

curetoday.com/articles/zyti...

mklc
mklc in reply to SooHwa99

Thank you so much.

Good health and happiness to you.

Schwah
Schwah in reply to mklc

Yes that’s the one.

Schwah

mklc
mklc in reply to Schwah

thank you so much.

Best wishes and good health to you.

Schwah
Schwah in reply to mklc

Yes reading your history, I see no reason that you should not add Zytega and Lupron to your arsenal. Let’s us know what your MO says on the subject.

Schwah

mklc
mklc in reply to Schwah

My concern is that I have been advised not to rush to the 2nd generation drugs (Zytiga, Xtandi) IF the Cassodex is still effective.

Because you don't know how long the Zytiga will be effective.

Also concern about side effects with these stronger 2nd generation drugs.

Your thoughts?

Schwah
Schwah in reply to mklc

That’s old thinking my friend. The old thinking was always use these drugs one at a time to make them last longer. That thinking was completely debunked with these latest phase 3 clinical trials that clearly proved that using Zytega early on with ADT reduced deaths by over 40%. Virtually every top prostate cancer Oncologist now believes the best SOC for hormone sensitive men with signs of metastasis, should include early intervention with adding either Zytega or taxotere to ADT as opposed to one at a time. The results have been dramatic to the good side.

Schwah

mklc
mklc in reply to Schwah

I think that's why my MO stopped Cassodex though his reason was different.

thank you kindly for your honestly.

Best health and happiness to you.

Schwah
Schwah in reply to mklc

Ok. If you want a second opinion let me know and I’ll get you the contact info for my MO- Dr Mark Scholz at Prostate Oncology Specialists in marina Del Rey ca. They do phone consults. A number of guys here use them. I’m very pleased with them. I go to ucla for second opinions and they usually say that his plan makes sense but they can’t recommend anything without a clinical trial to back it up. Scholz was actually using early Zytega with adt years before clinical trials proved its efficacy.

Schwah

mklc
mklc in reply to Schwah

Thank you so much. I do know of

Scholtz and that he is very highly recommended. My present MO has me in line for zytiga when my PSA starts to go up.

Thank you again.

Schwah
Schwah in reply to mklc

That’s my point. I wouldn’t wait. Proven to work better earlier.

Schwah

mklc
mklc in reply to Schwah

I meet with my MO in 2 weeks and will ask to move to Z asap.

Many thanks.

SooHwa99
SooHwa99 in reply to Schwah

That is very kind of you. I may very well take you up on that. I have seen his videos on YouTube. He seems very kind and measured.

When he recommended to do weight training to ameliorate the side effects of ADT I got a body builder trainer right away. I go to our Park District Gym at least 4 to 5 days a week.

Schwah
Schwah in reply to SooHwa99

Its amazing how much it helps with fatigue, loss of muscle, and attitude. Scholz says he sees it every day with his clients what a huge difference weight training can make. I must admit many days I don’t want to go but fear is a great motivator.

Schwah

SooHwa99
SooHwa99 in reply to Schwah

Yeah, me too. I have been a bit fatigued as of late, and the last week I really have to push myself.

I know I have to do it though.

SooHwa99
SooHwa99 in reply to Schwah

How would I go about getting a second opinion? Any idea how much it would cost?

I finished Salvage IMRT yesterday. My RO feels very strongly that we should stop the Casodex and then two more Lupron shots, then just watch my PSA.

I stated to her that I am in no way trying to overtreat myself, but I just feel that since my PSA was relatively low and there was no was to find where it was we are shooting in the dark.

It all seemed very unscientific...

Who knows where it is. It seems logical to me to do some sort of systemic treatment while it is knocked down???

I mean it is not crazy uncommon that men have a recurrance even after salvage radiation...

My cribriform pathology, the fact that I was never undectable and my high Decipher score all points to an aggressive cancer...

The Gleason 4 was cribriform cells. I would argue that it would seem it kind of puts me more in line with a Gleason 8 risk.

Thank you for your help.

Schwah
Schwah in reply to SooHwa99

Where do you live and what kind of insurance do you have? Guys here will undoubtedly have a great MO for you to seek a second opinion and my MO does phone appointments for out of town second opinions. My insurance paid for my oncologist appointment at ucla for a second opinion. You may want to ask your insurance company.

Schwah

SooHwa99
SooHwa99 in reply to Schwah

I live in Chicago and am seen at University of Chicago.

We have an HMO for the hospital employees.

SooHwa99
SooHwa99 in reply to Schwah

I do have an MO to, but just wanted watch and wait too.

I don't understand how physicians would stop a treatment that is still working. Why would you put a stop date on a drug before starting? Casodex is an older ADT drug but it is a very effective one.

Call me paranoid but sometimes I see the hand of big pharma working here. They want patients off older cheaper drugs and on newer more expensive ones before the Patent runs out.

SooHwa99
SooHwa99 in reply to Magnus1964

This is an ADT run with salvage radiation. I initially was only supposed to do 4 months of Lupron/Casodex. Usually the treatment states it should be 4 to 6 months, but apparently there is very little data as to whether it matters if you do 4 or 6 months.

I am not quite understanding why you would remove the Casodex.

I meet with her Wednesday.

You may be more attuned to what is right to do than your Dr. My Docs. and I do things differently more in line with your thinking.

Sorry, but your RO is not an MO who focuses only on Pca.

Nalakrats

SooHwa99
SooHwa99 in reply to Nalakrats

I am not completely understanding why I would stop the Casodex. What is the harm on continuing it? I level of molecular biology and chemistry in this area is limited.

I did meet with a MO last week. I know at this point I probably don't technically belong here, but you all are at a level of intelligence I can't seem to find anywhere else.

Well, the MO seemed to feel since my surgical pathology was as good as it gets and I started salvage radiation very early (PSA peak of 0.13) that we would just follow my PSA.

I did ask about the efficacy of doing Taxotere or Doxatel sp., but he didn't feel it was necessary at this time.

I just have deep concerns. I was detectable right out if the gate, I had cribriform cells on pathology,and now a Decipher of 0.71.

Maybe I should talk to the MO.

Nalakrats
Nalakrats in reply to SooHwa99

Now you are bringing more info to the conversation. Look I am not a doctor--but I have been on a lutenizing drug, not Lupron, but similar with Casodex for years. In 2018, I took a one year vacation, from both, and returned to its use in 2019, and in 2020, as of this past December, I am on another one year vacation. I am also DX with Cribriform. This pathology is very rare, and very aggressive. Only 0.4% of men are DX with this form. I would ask your Doctors how much experience they have with Cribriform---and the answer will be near or zero.

We have involved NC State Med. Duke, the Drug Manufacturers, and have asked how would you treat--they said there is no protocol---So I, leading the pack, with my doctors, are doing our own thing and Casodex is part of the program for now. Understanding that I am doing intermittent ADT--so as to not allow my Dormant sleeping Pca cells from getting use to the drugs, and morphing into something more dangerous.

What was your Gleason, and which number was the Cribriform-the 1st or 2nd number?

Nalakrats

SooHwa99
SooHwa99 in reply to Nalakrats

Histological Type Adenocarcinoma (Acinar)

Gleason Score 4+3=7 Grade Group 3 in the dominant tumor.

Gleason pattern 4 comprises 50% of the dominant tumor.

Gleason pattern 4 is composed if cribriform, fused poorly-formed glands

Perinueral invasion absent.

Multifocal prostatic adenocarcinoma with a dominant tumor 4+3 at the right posterolateral region.

Nalakrats
Nalakrats in reply to SooHwa99

Well I cannot give Medical Advice---all I can say is what I have done--and I was a 4+5=9, My 5 was the Cribriform. And I am in year 5---and have used Casodex, with my Lutenizing Agent[Vantas Implant], in all except 14 months--which were/are vacation months. But it is well known among my followers here I do a lot of Non-Standard supplementation, with an appreciable drug program.

Nalakrats.

Yes. You should be talking to an oncologist that specializes in Prostate cancer.

Schwah

SooHwa99
SooHwa99 in reply to Schwah

I have spoken with a MO last week. I am seen ot University of Chicago. His take was to what and see what happens after radiation and do every three month PSA. Crazy me, but I would like to do monthly.

I just have a weird feeling I need to do something systemic.

They give you Casodex initially to prevent a the effect of a testosterone flare that Lupron always gives. You don't need it anymore. You also don't need to have your T tested with PSA that low.

SooHwa99
SooHwa99 in reply to Tall_Allen

Thank you. I am aware of the protocol for Casodex. I have a very high Decipher and had Gleason 4 Cribrifirm cells.

In addition I was never undectable post op.

Tall_Allen
Tall_Allen in reply to SooHwa99

How high was your PSA at the time of your SRT?

SooHwa99
SooHwa99 in reply to Tall_Allen

<0.03

Tall_Allen
Tall_Allen in reply to SooHwa99

But that's undetectable. You wrote, "I was never undectable post op."

SooHwa99
SooHwa99 in reply to Tall_Allen

I had a RP April 1st 2019. 0.06, 0.08, 0.11, 0.09, 0.13 in October. Started ADT Novener 6th, INRT January 6th.

My peak PSA was 3.86 pre-op.

Tall_Allen
Tall_Allen in reply to SooHwa99

With a PSA of 0.1 at the time of your SRT, you probably didn't need the ADT, but with the cribriform and the high Decipher score, I see why you opted for it.

It’s normal to stop casodex to stop the psa flare from Lupron after a few months although I stayed on it for years as my RO had a different view. I see no need for Zytiga at this juncture but one should always get T tested with psa. Your pathology after RPwill dictate whether or not you have recurrence.

Stopping Casodex at this time will not make any difference.

I stopped casodex before finishing SRT and then stopped Lupron. Did the SRT help?

The plan is to monitor PSA and testosterone on a 3 month schedule. As testosterone goes up, the PSA may increase. When the testosterone levels, the PSA should also. If the PSA continues up, then there is a problem. My testosterone at 3 months is 89 from 3. PSA is level. So far so good.

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