Participating in clinical trial for Stage 4 bone mets

[HopingForTheBest1]

Have been on hormone therapy since June 25, starting with 30 day Firmagon, then on to 90 day Eligard with daily Zytiga/Prednisone as of July 25. PSA has dropped from 20 on June 4 (just before MRI fusion guided biopsy and before any treatments) to 1.3 as of Aug 6. Alkaline Phosphatase has also dropped from 248 to 163 from July 23 (when I started Zytiga) to Aug 8. Trial includes this ADT standard of care along with robotic/laproscopic surgery, which I just found out is now scheduled for Nov 14. Trial is determining effectiveness of extending life with performing surgery on PCa with mets. Hoping for the best.

[Brbnbrn]

Look forward to following your progress. Best to you and God bless you. Battle on...!

[HopingForTheBest1 in reply to Brbnbrn]

Thanks so much! We are all in this together, and we are helping each other along the way. That's why we participate in this great forum. It is so comforting to know I am not alone.

[Brbnbrn in reply to HopingForTheBest1]

Absolutely!

[Nachas613]

We have wondered about this also. Where is the trial you are participating in? Best of luck. See link below. The whole horse is already out of the barn theory may not be!!

health.harvard.edu/blog/com...

[HopingForTheBest1 in reply to Nachas613]

CINJ-Cancer Institute of NJ in New Brunswick.

cinj.org/clinical-trials/in...

[PLASTICMAN]

The surgery I assume is on the prostate....but does it make sense if you already have metastasis?.

I'm on Eligard....have been for about a year, and then on Xtandi which worked for about 5 months, then chemo for 4 months which didn't do any good. Now am going to try some radiation on lumbar mets to help with pain and Zytiga with Prednisone. See how that works, if at all! Am 78 going on 79!

[HopingForTheBest1 in reply to PLASTICMAN]

The trial is for recently diagnosed to determine the effectiveness of combining standard of care hormone treatment and subsequent robotic prostatectomy.

[j-o-h-n]

Before you know it Nov 14th will be around the corner.... Take care, follow instructions and make sure your Oncologist is competent. Also always take someone with you when you're seeing your Oncologist. A scribe who can also ask the appropriate questions. Enjoy the rest of this summer and the beginning of Autumn.

Good Luck and Good Health.

j-o-h-n Saturday 08/11/2018 9:42 PM EDT

[ctarleton]

We need Clinical Trials like this to help guide future clinical practice for prostate cancer. In other cancer types, e.g. ovarian cancer, the primary site is almost always routinely removed, even when there may be extensive metastatic disease.

Still, I am curious as to how much of your Clinical Trial sign-up conversations addressed the possibility for Urinary Incontinence following the RP procedure. Of course, any one person is a statistic of one, and, hopefully, you will be in a majority of men who may not have any lasting significant Urinary Incontinence issues.

On the other hand, I have met men who were glad they availed themselves of some pelvic floor physical therapy and training both before and after their procedures.

This link commenting on the results of the ProtecT trial also mentions things like approximately 26% - 17% of men experiencing Urinary Incontinence after RP, to the extent of still using one or more pads per day for 1-5 years after the surgery. (Thanks to Tall Allen.)

pcnrv.blogspot.com/2016/09/...

Regardless, Thank You for your participation in the Clinical Trial.

These are such individualistic decisions.

I was very metastatic to very many bones and lymph nodes at first diagnosis, with a PSA in the 5,000 range. Although one of my first impulses was to hope to cut, cook, or poison as much cancer as possible, ... with time I came to reconcile myself to the idea that systemic treatments were the best for me, without the added potential traumas & side effects of a prostate surgery or radiation. For myself, the advanced PCa treatments have worked well to keep me alive, so far, but have also had their own sets of side effects. I definitely would not have wanted to have been incontinent for each and every day of my remaining life with advanced PCa, too.

On the other hand, if I had had much less extensive metastatic disease, I might have enrolled in such a trial, myself, in hopes of better overall disease control and survival, etc.

Again, Thank You for your participation in this Clinical Trial.

The very best of luck and care for you!

Charles

[HopingForTheBest1 in reply to ctarleton]

Thank you. I surely hope that I will be in the majority with minimal side effects, which results from an experienced surgeon using the latest robotic laparoscopic procedure. My surgeon has performed over 2000, as has told me that the side effect rate is around 30%.

[teamkv]

Bernard Shaw said, “All progress requires change,” he wrote, “those who cannot change their minds cannot change anything.”

[TNCanuck]

Great results. Prayers that they continue for a looonnnnngggg time!