What's my next line of defense?

[MJStar]

MY ADVANCED PROSTATE CANCER JOURNEY UPDATED 7/20/2018

I was diagnosed with Stage IV Metastatic Prostate Cancer in July 2014; at the time, I was a very active and healthy 51-year-old male with no notable medical conditions. A biopsy and numerous scans confirmed prostate cancer was active in all my major bones from head to toe and I had spots in my liver, pelvis and spinal cord.

July 2014 - Stage IV Metastatic Prostate Cancer

PSA = 89.7 Alk Phosphatase = 1493

Upon my diagnoses, I immediately started a combined treatment of Leuprolide (Eligard, Lupron) hormone injection every 90-days, Bicalutamide (Casodex) 50mg tablet daily and chemotherapy Taxotere 6-rounds. To help my bone health I started a twice daily high dose of CITRACAL "CALCIUM+D and an infusion of Zometa every 90-days.

The treatment had an immediate effect on my cancer. My PSA lowered to under 1.0 and my Alk Phosphatase went down to less than 50.

September 2016 - Stage IV Castrate Resistant Metastatic Prostate Cancer (CRMPC)

PSA = 1.53 – 3.64

In early September of 2016 my PSA began to rise at this time I was informed I became immune to the hormone treatment. In other words; my cancer evolved to Castrate Resistant Metastatic Prostate Cancer. At this point my next line of defense was to start a daily dose of Xtandi (Enzalutamide). Xtandi is a hormone therapy classified as an "anti-androgen” Along with Xtandi, I also continued with my combined treatment of hormone Lupron injection every 90-days, Bicalutamide (Casodex) 50mg tablet, twice daily high dose of CITRACAL "CALCIUM+D and an infusion of Zometa every 90-days.

August 2017 - Stage IV CRMPC (Foundation ONE Genomic Biopsy)

PSA = 11.80

With my CRMPC advancing I elected to hold off on my next form of treatment to basically clear out my system and then get a biopsy sent to Foundation ONE for Genomic testing to see if my cancer altered into another form. Unfortunately, this test turned out to be a total failure because the team at AURORA MEDICAL CENTER GRAFTON did not expedite the biopsy in a timely manner (they lost the biopsy internally) nor did the pathologist prepare the biopsy per Foundation ONE’s instructions.

September 2017 - Stage IV CRMPC (Foundation ACT Genomic Blood Test)

PSA = 13.80

With the progression of my cancer I could not afford to wait and schedule another surgery to obtain a second biopsy nor could I wait for the standard two week turnaround for Foundation ONE testing so I elected to go with the quicker less informative test “Foundation ACT” blood test. This test was prepared and properly sent to Foundation Medicine, but unfortunately the test did not show any signs of genomic alterations. Results as follows….

TUMOR TYPE: PROSTATE ACINAR ADENOCARCINOMA

(0) genomic alterations Genomic Alterations Identified†

No Reportable genomic alterations were detected

No Clinical or Therapeutic Trials available

October 2017 - Stage IV CRMPC (PSA on the Rise Again)

PSA = 15.90

In May 2017 we saw my PSA on the rise again. By October 2017 my PSA was up to 15.90 so my oncologist recommended injections of Radium 223 (Dichloride, Xofigo) Between October 2017 and March 2018 I had (6) injections (1) every four weeks. I continued my daily dose of Xtandi (Enzalutamide) and my daily hormone medication Biclutamide (Casodex).

 

March 2018 - Stage IV CRMPC (PSA still on the Rise)

PSA = 38.90

The Radium slowed my PSA increase but did not do enough to slow my disease. By March 2018 my PSA was up to 38.90 and rising. I was told to continue with my daily dose of Xtandi (Enzalutamide) along with the hormone treatment, Lupron injection every 90-days and a twice daily high dose of CITRACAL "CALCIUM+D and an infusion of Zometa every 90-days. At this time I was told to stop taking the daily hormone medication Biclutamide (Casodex). Per my oncologist, the Biclutamide (Casodex) should have been eliminated/stopped in September 2016 when I started Xtandi (Enzalutamide). This was over-looked.

May 2018 - Stage IV CRMPC (PSA Rising Faster)

PSA = 52.90

With my PSA still on the rise 52.90, we elected to begin chemotherapy again. This time we selected Cabazitaxel (Jevtana) along with prednisone; I would get 6 to 10 infusions, one infusion every three weeks. I continued with the hormone treatment, Lupron injection every 90-days and am still taking a twice daily high dose of CITRACAL "CALCIUM+D and an infusion of Zometa every 90-days. At this time, I was told to stop taking the daily dose of Xtandi (Enzalutamide).

May 2018 - Stage IV CRMPC (Chemo Not Working)

PSA = 89.70

By June 2018 I had three infusions under my belt yet my PSA continued a steady rise and was up to 89.7. With that being said, my oncologist informed me the chemotherapy treatments of Cabazitaxel (Jevtana) are not working and we will need to start investigating precision medicine or clinical trials.

[JamesAtlanta]

That’s quite a journey. A couple of thoughts:

1) have you and your doctor discussed taking Zytiga? My PSA was rising (I was becoming castrate resistant) and adding Zytiga plus Prednisone to Lupron brought my PSA back to undetectable.

2) are you being treated at a Prostate Cancer enter of excellence? And is your oncologist a specialist in PCa? You seem to have had some challenges (being on a drug longer than necessary, lost tests, etc...) ... I am a big believer in second opinions and making sure I’m treated by someone expert in their field. And being an aggressive advocate for my own healthcare.

I’m sure you will get lots of posts with great advice. Hope this helps. Best of luck as you continue to fight! We all pulling for you!

James

[MJStar in reply to JamesAtlanta]

Hi James!

Yes this has been quite a journey....

Zytiga was mentioned but my doctor thought Xtandi would be a better choice. I will definitely follow-up with my oncologist and revisit Zytiga plus Prednisone & Lupron.

I am not at a Prostate Cancer Center of excellence but am willing to travel to such a facility. Where are you being treated? Do you have any facilities you can recommend?

[Dalph87]

Yes. Definitely ask your MO to let you try Zytiga, although similar to Xtandi, it works differently and might give you a good response. My father just started taking it a bit more than one month ago and so far he's doing very well.

The combo Zytiga + Prednisone + Lupron might be a good choice for you.

Best of luck with your journey, hang in there.

[MJStar in reply to Dalph87]

Thanks for the positive thoughts...

Good luck to your father

Stay strong!!

[Hidden in reply to MJStar]

Michael Jackson , Michael Jordan , you’re in good company there Star in those initials ..

[whatsinaname in reply to Dalph87]

What was the dosage of each of the three ? Also, the frequency of dosage ? Thank you.

[Tall_Allen]

After Xtandi fails, Zytiga doesn't usually last for very long. No harm in trying it, I guess.

It sounds like you've tried all the big guns except Provenge. Also, sometimes when all other hormone therapies fail, estrogen patches may work.

Other than that, that are many clinical trials for experimental drugs and combinations, especially immunotherapies.

[cesanon in reply to Tall_Allen]

What about the psma based treatments available in Germany and Australia?

No one seems to have mentioned them.

Any reason not to consider them?

[snoraste]

I second everyone’s opinion here, and like to add BAT as an option. You can search BAT on this blog.

[Kevinski65]

Check out what's up for clinical trials at NIH. After your initial trip to Maryland, if they can fit u up to a clinic trial they'll fly you back and forth, pay for some of the living expenses and coordinate with your doctor.

[Hidden]

What the hell is wrong with that damn PSA ? A wild ride that we are all on . Hold your head above water brother.. I am pulling for you . What’s good for you is good for all of us here .I began this bon voyage 3-2015, one year behind you .. My hope for us all is to not get mad or go mad but find solace beyond the pain and suffering and peace with self and your personal beliefs. We all must accept the brevity of our very existence once acknowledging our brief role on this planet .Then only ,can we really appreciate what we love and what is important to us.. we’re all going to go off of the falls in the end, luckily for you and I , with gods will , that’s my belief , today is not that day. Sorry for what all you must be suffering right now . I’ve had a glimpse of this myself. Take note you are far from being alone on the quest for survival. Good luck in this next month, hope thing can turn around for you.. take care .

[KingRasP in reply to Hidden]

Such words of wisdom and hope Lulo700... blessings of peace, courage and hope to you and all of your loved ones.

[Hidden in reply to KingRasP]

Much love to you and Peter everyday .

[Hidden]

That darn desert.