Follow up to the Follow up: Auximen Scan showed significant new cancerous growth

[Philly13]

I can’t believe that it has been 11 days since I posted the note in a previous thread. Time flies when you are having fun. It seems like yesterday that I wrote the post.

A lot has happened since then.

The MO from Jefferson called on October 31 to say that there was an opening in a trial for REGN 5678. I reached out on Monday morning to find out how we could get the qualifying process started. I had four exchanges with the office to schedule a conversation. After rejecting a December appointment and then two others late this month, my wife and I had a telemedicine conversation on Thursday of last week. It started with the news that I did not qualify since I have not had chemotherapy. Very disappointing.

I am determined to find an appropriate immunotherapy program that I can get into quickly, and have used every networking resource I have to see what is available. In the meantime, I have been approved for Docetaxel, so I can begin chemotherapy if nothing I am doing works.

I will be speaking to an Oncologist at the National Cancer Institute on Tuesday next week. I found a childhood friend that works at the NIH who facilitated this appointment.

I called an MO at MSKCC, where I have previously consulted. At this time, I have an appointment on December 23. That will be too late. They are trying to find space earlier, and his coordinator is supposed to call me back today.

I learned that someone I went to Israel with on a Young Leadership Mission in 1983 is a large donor to the Prostate Cancer Foundation (Michael Milken’s organization) and serves as the Philadelphia liaison. They have all of my information, and I expect to discuss with Dr. Simons soon.

Today, I received a call from my Oncologist at Jefferson who said there is now an opening in the AMG 509 study for December 4. I should be starting the qualification process soon. He said I meet the broad criteria for this study.

I was upset about him not knowing the criteria before calling me last weekend to tell me there was an opening. I sent him a note, expressing my disappointment. I didn’t burn any bridges but got a few things off my chest that I think needed to be said.

I had blood drawn for the Guardant 360 liquid biopsy. It identified an alteration/biomarker called AR T878A. The Dr. at Penn said that information would not influence treatment decisions. The little bit of research I did on the internet so far this morning seemed to confirm that, but there is something about Abiraterone that I don’t understand.

Tall_Allen provided a link to Prostate Cancer News which listed AMG 509 along with several other trials, including REGN 5678 (the one where I must have chemo first). tango65 suggested I find out about side effects.

I have been pushing hard to increase the chances of finding a good program to increase my probability of living with a decent quality of life for as long as possible.

There are a lot of balls in the air. I hope one lands safely where it can do some good. I know there are risks involved but have decided immunotherapy is my preferred direction. I have moved the deadline for making the chemo decision, but decision time is almost here. I had my annual physical on 11/2, and the labs indicate cancerous growth is accelerating. PSA rose from 17.4 to 22.5 and ALP rose from 115 to 157 in slightly more than 2 weeks.

I have a couple of questions. Maybe more than a couple if I keep thinking about it.

1. How do I find information about the side effects? I haven't had a chance to ask about the AMG 509 since he just told me about it yesterday. Regardless, I feel like it is good to discuss with others besides the Doctors administering tests. Experience says they skip over some minor things that can be scarier than they need to be if not expected. Tango65 recommended that I find out about it in the previous thread on the subject. I can't locate published information.

2. Median survival statistics for me are 2-3 years. I understand the mathematical implications. I took an advanced statistics course in business school. Nevertheless, even though I have ignored statistics, for the most part, it is puzzling because I am a very healthy feeling, and looking, sick guy. It is a very difficult thing to discuss an expiration date with my wife and children. I am a warrior and optimistic by nature, but I like them to be aware of the possibilities and probabilities. That way none of us have to focus on it and we can just enjoy things day-by-day. This is supposed to be a question, so I think I will express myself this way. WTF is up with that? How could someone as healthy as me be so sick?

I will stop there and go back to work for a while.

Philly

[Hidden]

It may be time to seriously consider Docetaxel .

[Philly13 in reply to Hidden]

I am seriously considering Docetaxal. It is staged and ready.

[Tall_Allen]

It's a Phase 1 study so they are trying to learn what the side effects are. With any immunotherapy, the biggest risk is death from autoimmune reactions and a cytokine storm.

You feel fine until you don't.

[Philly13 in reply to Tall_Allen]

I don't know how to react to the comment about a Cytokine Storm. I thank you for the help in formulating another question about the immunotherapies that I am seeking.

The idea that I feel good until I don't is a corollary to the investing and business cliche about a trend in motion stays in motion until stops. I can't remember where I first heard that, but it has meant a lot to me in my life. It has saved me from big mistakes. All of those mistakes were about money. This is different.

The bottom of the line, for me, in this situation is that I don't want to linger in life with others needing to take care of me. I will take some risks to try to maintain a quality of life that I deem to be acceptable.

Thank you,

Philly

[Bodysculpture]

Philly I am a competative bodybuilder and many cant believe it when I tell them I have stage 4 prostrate cancer and I have undergone chemo ,radiation and I am still on hormone suppressant 3 monthly

I still look and feel great however I was told I have an average of 4 to 5 years

This month brings the end to my 1st year

Like you I cant come to grips with this

My sons are in denial

You are gonna beat this Dad !

Even when I provided them with evidence they refuse to accept it

Wonderwoman wont entertain any discussion of me dying she gets upset if its mentioned very upset

So we dont talk about it in her presence

I believe the time is near

They developed a treatment that retards the growth of cancer

That we die with cancer not from it

Philly I dont feel like dying brother not at all

Maybe my wife and sons know something I dont

Stay blessed Philly

[Rbourn in reply to Bodysculpture]

Hello Bodysculpture - when I was diagnosed with stage 4 - Gleason of 9 - my first MO said he would give me 5-7 years. I got a second opinion at UNC Chapel Hill and that MO indicated that they were seeing so many new treatments that they have greatly expanded the range of successful treatments and that prognosis was no longer the case. Please know that there are lot’s of good reasons for hope. I just celebrated my 6th year of treatments and see good options going forward. Hopefully you get connected with a good MO who will provide you with insight into all of options available!

[Hidden in reply to Bodysculpture]

They know you so maybe 🤔 you have to trust in that

[cesces]

Why are you insisting on immunotherapy?

And why an untested one that is still in early trials.

Have you considered bipolar androgen therapy?

[V10fanatic in reply to cesces]

Or Provenge??

[Philly13 in reply to V10fanatic]

I am currently seeing Medical Oncologists at both Jefferson and UPenn. Both ruled out Provenge as an effective treatment for me. I didn't ask them to elaborate, which is not like me.

Thanks

Philly

[Philly13 in reply to cesces]

I have discussed it and went to see Denmeade at Johns Hopkins in 2018. I was talking about a Zytiga vacation in mid-2020 with my MO, when PSA started to increase. I have not revisited the subject since. I guess the answer to why I did not pursue it more aggressively is an unscientific gut feeling that it wouldn't work for me.

Thanks

Philly

[Rbourn]

Have you had genetic testing done to determine if your tumor is BRCA 1 or 2 deficient? I have had many treatments done over the past 6 years and recently found that I’m somatic BRCA-2 loss and my MO is recommending olaparib.....this has been FDA approved so has gone through all the trials and maybe something you could consider before going into a trial. Good luck!