8 years since dx, doing well ...

[traveller64]

Hi, I'm new here, brief history of my prostate cancer is below. My cancer has been kept under control with very low dose casodex since psa recurrence, so I'm grateful for that. Casodex monotherapy for high risk pca patients is not the standard treatment, however it's working for me, at least until now.. I'm eager to learn others' experiences with long term casodex monotherapy.

Age 64 (56 when dx), surgery by Dr. A. Tewari in Jan 11, path report: t3b, GS 8 with tertiary 5, SVI, negative margins.

PSA 3 months post op 0.03. Started Adjuvant ADT May 11 and IMRT by Dr. M. Zelefsky in Jan 12. Last Lupron shot June 12.

PSA 0.003 May 11 - April 13

PSA recurrence 0.8 Nov 14

Casodex monotherapy since Dec 2014 with 50 mg daily, current dosage three 50 mg tabs per week. PSA stable around 0.20 -0.25

[Fairwind]

You are very lucky...So much about cancer remains unknown...With some men, minimal treatment works fine...With others, nothing works...The docs have no explanation..

[Tall_Allen]

Are you still taking raloxifene with it to prevent gynecomastia?

[traveller64 in reply to Tall_Allen]

Hi Allen, yes I'm taking raloxifene daily. My current T level is around 220, I switch to tamoxifen if T level approaches to 350 - 400. I had to increase the dose from 2 tabs a week to 3 tabs a week recently, PSA is at 0.20 -0.25

[Tall_Allen in reply to traveller64]

I often tell patients about you, especially about how you discovered that tamoxifen lowered T levels, while raloxifene did not, but that both block the estrogen receptors in breast tissue. I hope someone will do a clinical trial.

[RICH22]

no, traveller had surgery jan '11.

[RICH22]

i was dx last year, went on 50mg/day casodex, dropped my PSA from 15 to <0.1 instantly, where it remains so far. i use a shitload of herbs, including OTC Zyflamend, which contains 10 herbs, mostly chinese. my Testosterone = 400+, maybe due to Flomax and Proscar, to keep the gland nice and small, so i can pee easier. ED is diminishing little by little, so that's a big plus.

[traveller64 in reply to RICH22]

Do you have breast tenderness, swelling? Is your PSA still undetectable?

[RICH22 in reply to traveller64]

never said undetectable. <0.1 could be that but i've seen much lower numbers in other posts, so i dunno.

but yes, have tenderness and some swelling, but really a slacker with the exercise to build healthy manly muscley pecs. pretty sure the swelling would shrink as muscles build. i'm just glad not to see 14+ PSA anymore. i just read a load of posts here about keeping Testosterone also very low, like <1.0 but if chemo prevents PCa cells from using the stuff, i'd rather have enuff of it in my body to derive the other metabolic benefits. 400 is still at the low end of normal (280 - 1100). the older we get, the less we have... supposedly.

[traveller64]

I had surgery, 8 years ago, then adjuvant ADT and IMRT to prostate bed and lymph nodes. I started with casodex 50 mg daily, then reduced the dose to 2 tabs a week and now it is 3 tabs a week. I've been on casodex for 4 years

[Hidden]

So nice to hear from you. It seems like some few of us are taking casodex only. I have now been on it for 4 years and take a 50 mg tablet daily. Ipsa is now right around 1.5. unfortunately my oncologist retired. Who do you go to? Let's be sure to stay in touch. I am very curious about your doctor since he seems to think out of the box like my like my oncologist used to.

Thanks Tom

[traveller64 in reply to Hidden]

Hi Tom, my MO was Dr. Howard Scher at MSK in NYC until early this year when he stepped back from clinical practice. He definitely thinks out of the box, doesn't care much about the standard of care.

Now, I'm seeing a young MO (Dr. Scher's fellow) at the same hospital.

What was your PSA trend over the past 4 years? Were you on different meds or just Casodex?

[Hidden in reply to traveller64]

Perfect - What is your new oncologists name? My Radiation Oncologist just completed his Fellowship at MSK. I am curious if there are any new suggestions other than Lupron.

Thanks Traveler

[traveller64 in reply to Hidden]

My new MO is Dr Deaglan McHugh at MSK

[Hidden in reply to traveller64]

Thanks so much traveler for your MO. As you know, I take 50 mg of Cassodex daily. How did you come up with your 49 month Cassodex regime? I have my psa taken monthly - a test today. In my last test my psa was 1.5. My T level is 520 - is that too high? For the next 30 days, I may try 50mg one day and 100 mg on the next day. Please keep the info coming.

We are quite similar.

[traveller64 in reply to Hidden]

I also have my PSA and T taken monthly. Why would you increase the Casodex dose? I think T level at 500 is ok. The important thing is that as T level increases PSA follows the same trend. Your PSA is not high and I assume it has been in that range for a long time. Are your scans clear?

[Hidden in reply to traveller64]

No - scans are not clear. 4 bone mets only - found 4 years ago. . Not growing. Less intense on the scans.

I too have my psa and t done monthly. I just don't know when to pull the trigger on Lupron. The MO Chairman at Phoenix Mayo Clinic says - do it now - but retired MO in Denver said wait until around psa of 4.

I may fly up to see your Dr. McHugh.

What does Raloxifene do for you?

Who prescribed it?

Merry Christmas.

[traveller64 in reply to Hidden]

Tom, my MO in MSK was Howard Scher but this year he stepped down from clinical practice, he devotes his time to research now. This September, I met with the new MO, Dr. McHugh, a young doctor, bright but does not have the same experience as Dr. Scher. So I think it is not necessary for you to fly to NY to meet him.

I use tamoxifen and raloxifene to prevent gynecomastia. Tamoxifen also decreases testosterone so I use raloxifene (which does not have any effect on T level) daily and if T level rises (which causes PSA to rise) then I use tamoxifen for 1-2 months and then continue with raloxifene.

Using raloxifene was my idea and Dr Scher approved it

[Hidden in reply to traveller64]

Thanks Traveller:

I decided to take 2 - 50 mg every other day, instead of one a day, until my next psa test in January. Sounds like you and I are fortunate that Cassodex seems to work for us.

I am still undecided when to start Lupron.

Thanks for the input on your new MO.

Really would like a second opinion from another "think out of the box" MO here in the west.

Have a great Day.

[StayingOptimistic in reply to traveller64]

Traveller,

I am glad I found this thread. I am also been treated at MSK by different MO than yours. Does Dr. Howard is the one prescribing casodex to you? would most MO at MSK would agree on this approach instead of the normal lubrron?

Thank you

[traveller64 in reply to StayingOptimistic]

Yes, Dr H. Scher treated me for more than 3 years. He started with casodex 50 mg/day then reduced the dose to one tablet a week, then 2 tablets a week.. No idea if other MO's at MSK would prescribe casodex or not. Who is your MO?

[GP24]

Hi Traveller,

Allan mentioned you so often that I plan to use Bicalutamide monotherapy as well.

Do you take 60 mg Raloxifene daily instead of 10 mg Tamoxifen daily? Or do you take 20 mg Tamoxifen daily?

Why did you increase Casodex from two tablets a week to three tablets?

[traveller64 in reply to GP24]

Hi GP24,

I assume you have a MO, you should talk to him/her before starting any medication.

I started with Tamoxifen 10 mg daily 4 years ago, but we realised that Tamoxifen caused my testosterone decrease sharply. We wanted the T level in the 300 - 400 range. So I tried Raloxifene and saw that it helped with the breast tenderness while having no effect on testosterone. So I take raloxifene 60 mg daily (I guess this is the only dosage available) and if my T level increases too much, I switch to tamoxifen for a couple of months to bring the T level down.

It has been 49 months since PSA recurrence. Below is the Casodex dosage during this 49 months:

1 month 150 mg daily

12 months 50 mg daily

4 months drug vacation

3 months one 50 mg weekly

25 months two 50 mg weekly

4 months three 50 mg weekly

The average daily Casodex taken during 49 months is 0.25 mg (current dose 0,215 mg). During the first year of the "two 50 mg tablets a week" regimen PSA was stable at 0.08. Then during the second year it gradually increased to 0.27.

These PSA numbers are quite low but our aim is to have a stable PSA rather than an increasing trend. So currently I am taking 3 tablets a week, recent PSA is at 0.21

[Hidden in reply to traveller64]

Hi Traveller:

Are your scans clean - any mets in sight?

Merry Christmas

[traveller64 in reply to Hidden]

Fortunately, no mets found in scans. Latest one was a PSMA PET/CT in early 2018.

[GP24]

Thank you very much traveller! I have been taking 150 mg Bicalutamide daily for four weeks and reduced that to 50 mg daily a few days ago. My PSA value was reduced by 75% after two weeks of Bicalutamide.

I want to keep my PSA value low without many of the side effects of Lupron and plan to get radiation treatment beginning of next year. This would be adjuvant ADT then, similar to the RTOG 9601 trial.

[Hidden]

Hi Nalakrats:

How are you coming on your Cassodex survey?

Cassodex has worked - 50 mg for 6 years.

Curious if larger dose would be helpful.

Thanks for your insight.

[GP24]

Hi Traveller,

you wrote: „I'm eager to learn others' experiences with long term casodex monotherapy.“

I did no long term casodex monotherapy but a neo/adjuvant antiandrogene therapy. This was my personal decision and not a recommendation by the RO. Started with my Bicalutamide monotherapy at a PSA value of 4 ng/ml and about 7 lymph node mets detected with a PSMA PET/CT. One of these outside the pelvis.

First I used 150 mg Bicalutamide for four weeks. Two weeks of these reduced the PSA value to 1.29 ng/ml and then four weeks later I had 0.96 ng/ml. This was my neoadjuvant therapy part.

Then I had my PSMA therapy with Lu177 beginning of 2019. I am still hormone-sensitive. One cycle of the PSMA therapy caused a complete remission of my lymph node mets on the PSMA PET/CT. Four weeks later my PSA value was down to 0.2 and stayed there. Since April I used 50 mg Bicalutamide every other day which resulted in a PSA value of 0.1 end of April. I now continue with Bicalutamide as an adjuvant ADT for the PSMA therapy until the end of May. Then I will observe and see when the next mets will show up on a PSMA PET/CT. I plan to have a second cycle of Lu177 when new mets are detected with a PSMA PET/CT.

My normal testosteron level seems to be 5,93 ng/ml. The Bicalutamide/Tamoxifen treatment increased that above 10 ng/ml.

I chose Bicalutamide because it has fewer side effects compared to Lupron and because it seems to increase the PSMA expression and therefore several researchers suspect it could make a Lu177 treatment more effective. The doctor who did the Lu177 therapy said I would be an „exceptional responder“ so Bicalutamide may have helped.

GP24

[traveller64 in reply to GP24]

Hi GP24,

Yours seems to be a very interesting and successful treatment plan. I think it's unusual to have the Lu177 for only lymph node mets. Did you have any side effects from Lu177 therapy? I see that you live in Germany, where did you have the therapy? I've been to Heidelberg hospital and I know they have great experience in this therapy Do you have a MO specialized in prostate cancer? I could not find such an MO though searching the internet. Finally, with such a high T level, do you experience breast swelling/tenderness?

[GP24]

Hi Traveller,

yes, it is unusual but the mets could not be radiated with CyberKnife, at least the RO refused to do it. The single met outside the pelvis could not be removed together with the lymph nodes in the pelvis with surgery i.e. lymph node dissection. So the only local therapy left was radiation with Lu177. I went to Bad Berka since I had seen a video of a presentation in which Prof. Baum mentioned that he treated 17 hormone-sensitive patients already. It was still a fight to get him to treat me. Heidelberg will only treat castration-resistant patients as far as I know. I had fatigue and a slightly dry mouth after the therapy, but this is all gone now.

I have no oncologist. In Germany the urologist sends you to an oncologist when he wants you to have a chemo. The prescriptions I need I get from my GP or my urologist, depending on what I ask for. In all, I prefer local therapies and avoid palliative systemic therapies if I can. However, I believe in adjuvant ADT with radiation, but not for 36 months.

In 2016 I had nine months of ADT with Degarelix and got my breasts radiated before that. They grew a bit in size anyway. So I now take Tamoxifen 10 mg together with the bicalutamide and I have no problems with gynecomastia. It is the bicalutamide that increases the testosterone and I hope that the level will go down when I end my adjuvant hormonal treatment this month. I could not find a study about side effects caused by a testosterone level being too high.

I had described my PSMA therapy in this post:

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