Never more discouraged than now

[Costarica1961]

I completed my fifth, and now once again my final docetaxal session , it was suppose to end 3 weeks ago and I was scheduled for a phase 1 harpoon clinical trial at OSHU cancer facility with Dr T Beers. Although my PSA went down from 9.3 to 7.1. After session 4, at that point the decision was made to milk this chemo benifit it was showing PSA progress, a downward trend. Well yesterday a increase to the highest psa recorded of 12.4. Ever. I am now scrambling to get a slot back into trials. They sent a chaplain into my chemo room yesterday that was a little odd, and unexpected. I am not depressed just anxious and feel like time was wasted a bit holding on to another unnecessary chemo round. Oh well it is what is. Onward and upward.

[dmt1121]

It sounds like your PSA is bouncing around a bit. My recollection is that it takes a few weeks to determine what it actually is, following chemo. That does not mean you shouldn't be looking at your other options and checking on getting back on the list for that trial.

However, it's always good to take a deep breath and realize how great it is to be here in this moment. None of us know what twists and turns are in our future. All we can do is try to enjoy our time and plan, as best we can, for the future.

You are doing just what you should be and I am sure Dr Beer will work to get you back into the trial, if needed. That same trial is being conducted at other facilities and you can google them. So, if for some reason OHSU is not an option, there are other research hospitals that are conducting the same study within a few hours of OHSU.

I hope all goes well, your PSA comes back down and/or you get another treatment plan that will work for you. Let us know what's going on. We are with you!

[Costarica1961 in reply to dmt1121]

I have read the same thing on other posts about chemo bounce, although historically mets have occurred in me (4) at much lower number that the seemingly dire concern my doc onc has. If I had a calm captain at the helm of my care that changes my perspective. I truly enjoy life and try to make the most out of every single day. I love my wife and animals as well as my time spent with long time buddys golfing fishing etc. Although I am at a critical point in my care, and every. Made or allowed to make for is crucial, therefore all the critical input is helpful. Thankyou and good health to you.

[Hidden in reply to Costarica1961]

“I truly enjoy life and try to make the most out of everyday single day” Bravo Costa !

[Hidden]

Wtf? That’s bullshit amigo . You are one tuff cookie.Next Get out the harpoon . I’m praying for something to “give “in your favor . You’re pc requires that you keep swinging. Rest up from chemo .. Throw the kitchen sink at this bitch . 💪

[Costarica1961 in reply to Hidden]

Sounds like a plan. Thankyou

[Hidden in reply to Costarica1961]

Your faith in God will lead you through . May God bless you 🙏

[Costarica1961 in reply to Hidden]

Thankyou god bless on your journey.

[Hidden in reply to Costarica1961]

Thank you brother🙏

[Chugach]

Hey brother- stay strong, lots of options. The same time thing happened to me when I was on Docetaxel. Consider:

1) genetic testing for immunotherapy

2) if you don’t have the markers for immunotherapy consider this trial: clinicaltrials.gov/ct2/show...

3) get a PSMA pet scan to see if LU-177 might work for you. If it might, go to Australia and it it (cheaper than U.K. or Germany). The Theronastics company is Australia I have heard recommended for setting it up.

4) consider other chemo (via med Onc) consider carboplatin, cisplatin, others.

Stay strong brother -Purda Vida

[Costarica1961 in reply to Chugach]

I like options, I have done genetic testing 7 or 8 months ago which led me to the phase 1 clinical trial, myself and my new oncologist a prostate cancer specific oncologist believes this would be potentially the best treatment at this time, although the lu 177 in Australia was good information to keep In my back pocket. What was so alarming about that day, (last chemo) there was more discussion of hospice and end of life plans questioned by onc RN. Thankyou so much for your help.

[Chugach in reply to Costarica1961]

I’ve been there. Some doctors, although they may be excellent sometimes don’t have much bedside manner. If your doctor is not advocating for you and pushing to figure it out, then find another doctor. I had doctors like that in Alaska, they were kind of checked out, not watching the latest research and in preretirement mode, probably just went to Alaska to do some fishing. Anyway if I had stayed with those guys I’d probably be dead by now. I know it can be expensive to travel to see a doctor, but it can be worth it to find the right one.

Purda Vida

[Hidden]

An option for you is second-line chemoterapy Cabazitaxel. It is approved if Docetaxel is not effective.

From what I've heard, the side effects are better than Docetaxel.

[Costarica1961 in reply to Hidden]

I have brought that up and it was quickly dismissed in lieu of clinical trial. Thankyou so much.

[scarlino]

My Docetaxel only worked for a short time. They moved me to Carboplatin and Taxotere. That worked very short term as well. My point is it is discouraging when things don’t work. I have been in various chemo regimes for the past 18 months with limited success. However, there are more things to come and while my cancer is not eliminated my lymph nodes have remained stable or decreased in size and bone mets have healed. Don’t be discouraged. Hang in the game and something more else will show up. Take victory in small improvements. PSA at metastises is not as important as scans are. Be blessed and keep your chin up!

[scarlino in reply to scarlino]

Mistake: Cabotaxel not Taxotere.

[Costarica1961 in reply to scarlino]

Clinical harpoon trial on deck. Thankyou

[j-o-h-n]

I think the chaplain was looking for a donation.....Next time tell him you donated to Health Unlocked already.....Stay strong and beat those son of bitches to the core..............

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 07/18/2020 1:29 PM DST

[Kaliber in reply to j-o-h-n]

Yayahahahaya

[Costarica1961 in reply to j-o-h-n]

Well she came to the wrong room that day.

[Kaliber]

Half of the time spent with my first oncology doc Visit was with a hospice crew. My circumstances grim enough to have them recommend hospice for me. Well , it’s been the better part of two years later and my 1400 -1600 psa cancer has been in biochemical remission for most of that time and remains so. The heck with negative thoughts , concern about that priest , life can and will go much longer than you might think . My friend Urang on this group , after 20+ years has been out of treatments for several years now ...not hospice in the technical sense because he is up and about and living at home. Now and then they have to tighten up the stainless steel supports on his upper spine or radiate a vertebrae spot that is hammering him .... but he persists years post treatments.

Hang in there , humans are resilient and can persist for far greater periods than someone might ever dream. Btw: Urang’s psa has been between 250 and 500 for several years without treatments.

💪💪💪💪👍👍👍👍

[Costarica1961 in reply to Kaliber]

Thankyou I know you're right!

[Shooter1]

Taxotere and lupron PSA rising after cycle 4. Added Xtandi at cycle 5. Worked for me. Hard battle for 9 cycles and 160 mg Xtandi. Now on 80 mg Xtandi and orchiectomy to get off lupron. Best of luck, hopefully you will find a combination that will work for you.