Immunotherapy Status Report

[Philly13]

Today is my 3rd infusion of the antibody used in the AMG 509 trial. The injection gadget is hooked up as I write this, and it is entering my bloodstream at the rate of 10 ML per hour.

The first two infusions were uneventful, which is a beautiful thing. I have had no side effects to date.

The last time I reported was just before the first treatment, and I was anxious and emotional. Kaliber responded with words that were beautifully written and helped me to put things in perspective.

An excerpt follows, “In an obtuse kinda way I won’t be disappointed by expectations I don’t have I guess but I still look at what you are doing and what you have (mobility & health) and think how exciting ...even thrilling your circumstances are compared to mine. I envy you.”

Kaliber, your words helped in an immeasurable way. You changed the way I think about this as well as how I talk about it.

Thank you, Thank you, and Thank you---Kaliber, you delivered the right words at the right time to help. It is a challenge to find adequate words to express the gratitude I feel.

I am grateful for the opportunity to try this antibody and as Kaliber correctly pointed out, under the circumstances it is thrilling to be in a position to increase the probability of finding an effective treatment. There is a chance that all this is helping to punch back at the metastatic disease in my system.

I have kept in touch with the Doctors at the National Cancer Institute in Bethesda and spoke to the CEO at Michael Milken’s Prostate Cancer Foundation. The CEO of PCF thinks the AMG 509 trial is the best place for me to be at this time. The Doctors at NCI and PCF are following the progress and will be there with Plan B and/or C, if necessary.

Thanks for the help in talking myself out of the emotional trap of dealing with cancer and going down rabbit holes in my mind. I had a brief moment thinking I feel too good, maybe this is not working, but I talked myself out of that crap quickly this time.

I get the infusion weekly for the foreseeable future. This week and next I stay in the hospital for 24 hours. Subsequent infusions will be as an outpatient, assuming things continue on a glide path.

They will start to check on the effectiveness in 5 more weeks. I am not sure what all the metrics will be to measure the immune system response.

A bonus is that I get a COVID test every Saturday at Jefferson and the results are reported by the end of the day. I am permitted to see my 21 month-old Granddaughter on Sundays, even though I go to the hospital every week. That is excellent medicine.

I will take this opportunity to wish everyone a safe and healthy New Year. I hope you have enjoyed this strange holiday season and I hope we all get the vaccine soon.

Best

Philly

[pleinairpainter]

Great to hear about how you and your treatment are doing Philly13. A Happy New Year to you and the family! Here's to many more years of seeing your granddaughter (and, of course, family and friends).

[Philly13]

My mind went back to a scene and a song from the Monty Python movie called "Life of Brian," as the year 2020 comes to a close.

Some things in life are bad

They can really make you mad

Other things just make you swear and curse

When you're chewing on life's gristle

Don't grumble, give a whistle

And this'll help things turn out for the best

And

Always look on the bright side of life

Always look on the light side of life

If life seems jolly rotten

There's something you've forgotten

And that's to laugh and smile and dance and sing

When you're feeling in the dumps

Don't be silly chumps

Just purse your lips and whistle, that's the thing

And

Always look on the bright side of life

(Come on)

Always look on the right side of life

For life is quite absurd

And death's the final word

You must always face the curtain with a bow

Forget about your sin

Give the audience a grin

Enjoy it, it's your last chance anyhow

So always look on the bright side of death

A just before you draw your terminal breath

Life's a piece of shit

When you look at it

Life's a laugh and death's a joke, it's true

You'll see it's all a show

Keep 'em laughin' as you go

Just remember that the last laugh is on you

And

Always look on the bright side of life

Always look on the right side of life

(C'mon Brian, cheer up)

Always look on the bright side of life

Always look on the bright side of life

Always look on the bright side of life

I mean, what have you got to lose?

You know, you come from nothing

You're going back to nothing

What have you lost? Nothing

Always look on the right side of life

Nothing will come from nothing, ya know what they say

Cheer up ya old bugga c'mon give us a grin (Always look on the right side of life)

There ya are, see

It's the end of the film

Incidentally this record's available in the foyer (Always look on the right side of life)

Some of us got to live as well, you know

(Always look on the right side of life)

Who do you think pays for all this rubbish

(Always look on the right side of life)

They're not gonna make their money back, you know

I told them, I said to him, Bernie, I said they'll never make their money back

(Always look on the right side of life)

Here is a link to a YouTube version. youtube.com/watch?v=kE186w9...(Not working as expected?)

I chose not to link the movie scene featuring Eric Idle getting crucified, for fear it could be too offensive.

Monty Python ain't for everyone, but I think they are funny and often profound.

Philly

[Newyork6264 in reply to Philly13]

Thanks for this. Tough time of year, no kids for holidays and hoping for another non-covid one. This perks me up and makes me laugh. Going to rewatch the movie today. Thanks and hope 2021 is a wonderful one for you.

[Ramp7 in reply to Philly13]

Loved Monty Python in the day.

[Kaliber]

Hey buddy .... it’s good to hear that you can see your glass is more than half full now because it really is .... I appreciate the nice words but this is a community where all of us support each other .. each in his, or hers, own way. Just in what you are doing right now ...what you are expressing... the ability to dump those downer blues and look ahead to positive possibilities, that in of itself encourages others by YOUR example. It’s all of us here together brother ... get help and give help if possible ... that’s what we PCa brothers are all about isn’t it ...... thank you.

💪💪💪👍👍👍❤️❤️❤️❤️

And btw: tho things are a little ( ? ) sideways in my case, Im very much fine with it ... I’m very strong and I can definitely live with it. “ live “ being the key word there .... and boy howdy. I’m absolutely looking forward to the new year , I hope you are too.

I have “ lots “ planned on my QOL bucket list.

[Philly13]

Thanks for sharing what you have. It is interesting that we fight a common enemy but the physical manifestations of the fight are different for everyone. Reading your profile it seems you have been hit with the kitchen sink of symptoms for the disease. I consider myself very strong, and think that discussing my intermittent downtimes is a sign of growing strength. For most of my life, I would not do that under any circumstances.

I have a good friend who has had extraordinarily high PSA for 8 years without evidence of spread. He plays golf 3 times a week, and only started ADT 2 years ago after messing around with crazy diets and the like. His PSA has been as high as 3500 and is now about 1100 and he continues to be asymptomatic, though I think he had systemic problems as his PSA approached 4000.

Anyway, thanks again.

Philly

[Danielgreer]

Hi Philly, I have an interest in this trial. Can you report back in a few weeks about the effectiveness?

[Philly13]

Absolutely. I intend to share everything I can. Aside from being hopeful that there is a decent probability of success, there is satisfaction in participating in a study that can help others whether it works for me or not.

[leo2634]

Best of luck Philly. I hope the trial and the New year brings you success. Leo

[Dett]

Kaliber does have a way with words, doesn’t he. I find his enthusiasm for life despite tremendous obstacles very inspiring. I wish you the best, Philly.

[Kaliber in reply to Dett]

Thank you brother Dett ... hoping for a great New Year’s Eve for you and your loved ones tonight ... hope the new year is bright and happy for you’se guys too.

🥳🥳🥳🥳🥳🍾🍾🍾🍾❤️❤️❤️

[GeorgeGlass]

Good luck and prayers. Is this trial at Jefferson or nci?

[Philly13 in reply to GeorgeGlass]

This trial is at Jefferson.

[HopingForTheBest1]

We are all rooting for you. 🙏 Your success is our success.

[doklam2017]

Great to hear fro you, may god be with you in all your endeavours.😀

[RonnyBaby]

Thanks for sharing - these types of posts really add to the overall aims and objectives of the site.

You've provided significant commentary as well as helping us learn about some new potential therapies.

Wishing you the best on your journey ....

[j-o-h-n]

If only you didn't live in Philly..............."known as a cemetery with lights".....

Give them your best shot.........(below the belt).... Enjoy 2021.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 12/30/2020 6:05 PM EST