Well I finally got my 15 minutes of f... - Advanced Prostate...

Advanced Prostate Cancer

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Well I finally got my 15 minutes of fame.

Costarica1961 profile image
87 Replies

Good day gentlemen. As some of you may know I am involved in a phase 1 clinical trial. Harpoon at OHSU. I finished my 3rd infusion and was anxiously awaiting going home after 9 hours at a outpatient facility. Unfortunately I had a 103 fever and a very low pressure. So I waited and waited, finally they admitted me into the E.r dept for observation. A blood lab was done and my liver enzymes ast was 2152 my all phos was through the roof, well this gunea pig data went nationwide in the medical circles according to Dr B they have never seen number so high with at least this study. Luckily they have slowly gone down . Had to miss a week of infusion and my dose will be reduced going forward. I am having radiation to both humerouses tommorro , I have tremendous met pain. I have seen my bone scan from Aug 10 and I have joined the paved club. Hoping immuotherapy will help, trying to stay positive and keeping my eyes on the possible end results.

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Costarica1961
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87 Replies
Tall_Allen profile image
Tall_Allen

Sheesh. I hope it's true that what doesn't kill you makes you stronger.

Costarica1961 profile image
Costarica1961 in reply toTall_Allen

I am one tough lab Rat.

in reply toCostarica1961

They don’t know who they are f n with !💪

tango65 profile image
tango65

Sorry to hear you had such a reaction to the treatment.

You are really brave to go into this type of trial, thanks.

Best of luck on your journey.

Costarica1961 profile image
Costarica1961 in reply totango65

Brave or desperate, either way I'm in it too win it.

in reply toCostarica1961

Hope is that it is deleting the p c?

George71 profile image
George71

Sorry about all the problems, hang in there. It sounds like it is getting better and you will get good response to the treatment.

Costarica1961 profile image
Costarica1961 in reply toGeorge71

I hope so, cause this is no picnic.

timotur profile image
timotur

You’re a true warrior, stay strong! Best wishes for your treatment. 🤞

Costarica1961 profile image
Costarica1961 in reply totimotur

Thankyou. You as well

Kaliber profile image
Kaliber

Wow those are jaw dropping numbers ... herze hoping that met pain is gone pronto ... I smell some rads and Fentanyl in the wind. Keeping my good thoughts for you brother.

I was in a clinical trial once ( not ) ... instead of Harpoon , it was called “ Lampoon ( was gonna say tampon but changed my mind ) “ .... in my trial, everyone was given the placebo.

Just say’in 😂😂😂😂💪💪💪👍👍👍🌸🦋❤️🌼🌈

Costarica1961 profile image
Costarica1961 in reply toKaliber

I feel like I have been harpooned. But this too shall pass.

Kaliber profile image
Kaliber in reply toCostarica1961

Boy howdy it sounds like it . I have a bit of met pain myself buddy, my heart really goes out to you. I’m rooting for effective pain management ASAP for you. We all have too much on our plate already, we absolutely deserve , at the least, pain free palliative and hospice eras of our lives. Let’s get those docs crank’in. and do their jobs and get that fixed .... it’s very doable . Quicker is better.

Best wishes brother 💪💪💪💪👍👍👍❤️❤️❤️

MateoBeach profile image
MateoBeach in reply toKaliber

Anyone know how I can get a good placebo outside of a clinical trial? Seem to be as food as many other treatments with lower side effects. 🤣🤣🤣🤷🏼🥂

Kaliber profile image
Kaliber in reply toMateoBeach

Yayahahahaya yayahahahaya yayahahahaya .... you’re right , a really good placebo , with absolutely nothing at all in it , is really hard to find. I hear there’s a place down in the the SOMA in S.F. , that in early evening when the streets are packed, where you can buy “ pure “ placebos. You can do half a hit of one of those and get the same results as three regular placebos.

Just say’in 😂😂😂😂😂❤️❤️❤️

in reply toMateoBeach

Hahah😂

dmt1121 profile image
dmt1121

You have gotten everyone's attention. That's not easy! Please stop spiking your infusion IV. It could be dangerous!

Kidding aside, you are doing all you can. I knew someone I worked with a few years back on an immuno-therapy treatment for melanoma that had invaded every part of his body, including brain and liver. The therapy literally almost killed him. He had to be brought back from his treatments in Portland to Medford (5+ hour drive) in an RV to allow him to lie down the whole way. He could barely walk when he came back to the office. Everyone thought he was done. He fully recovered with recurrences that were treatable when they occurred. He had a 15% chance!

So, stay the course. We are with you and DO stay as positive as you can because the mind is an important part of the equation for anyone trying to get well.

Please let us know how you are doing when you have time and feel up to it. Take care.

Please, Let’s not do that again? Does anyone know why? Just an adverse reaction? I m pulling for you to stay away from the hospital ....

Patrick-Turner profile image
Patrick-Turner

15 minutes of fame is better than I have ever managed, 15 seconds maybe, at age 23, when some dude on a building site said "Maate, youse is de man hoo they can't root, shoot, or electrocute.."

I have the dubious honour of being a "pinnup boi" because someone said I was healthiest stage 4 cancer patient at the Canberra Hospital.

From what you say, you seem fairly OK with the idea that "life wasn't meant to be easy."

There was a Prime Minister here in Australia in 1983 who was infamous for saying this before and election, and he lost. Voters don't like being told some things.

I wish you The Best Of Luck,

Patrick Turner.

dadzone43 profile image
dadzone43

Wretched experience. Positive thoughts going forward.

Faith1111 profile image
Faith1111

It’s clear you have a lot of positive thoughts being sent. Best wishes going forward

Jackpine profile image
Jackpine

Costarica1961,

You are one tough lab rat more power to you brother!!

Stay strong and praying things improve!!!

Stevana profile image
Stevana

I too am in an immunotherapy clinic trial. It’s in phase 2 using docetaxel and nivolumab for mHSPC patients. It’s kind of kicking my butt, but nothing like you’ve experienced. I just had the 2nd cycle of six infusions every three weeks. I hope I’m not in for the rougher ride you've just experienced. I have to say I’m pretty weak right now but staying the course. My worse SE is thrush which I’ve been taking nystatin for in an attempt to get it under control. Not much of an appetite when your mouth is raw and you can’t taste anything. I’ve dropped about 10 pounds so far. One bit of advise (not that any of you would be so stupid) don’t have your uvula removed during chemotherapy. Mine had been giving me problems, becoming elongated and causing me to choke when I slept, so I went to an ENT guy and he clipped it out on my initial visit. He also told me it would heal in about three days. I’m now finding out it could take up to three weeks. Not something you want to deal with during chemo and with thrush at the same time. I hope to be out of the woods by the time my next chemotherapy session comes around.

I wish you all the best going forward and that the worst is past you. Stay strong. That's what I’m planning to do, but sometimes easier said than done.

monte1111 profile image
monte1111

If I have a uvula, I certainly ain't getting it clipped. Sorry you are going through such crap. Great post. I hope it doesn't hurt when you laugh.

j-o-h-n profile image
j-o-h-n in reply tomonte1111

I DIDN'T WANT YOU TO MISS THIS:

What is the purpose of a uvula piercing?

The jewelry will also pull the uvula down during sleep, reducing the diameter of the nasal airway and increasing the chance of sleep-related breathing disorders such as snoring. Uvula piercings may migrate leading to bisection of the uvula, which is harmless.

I'm Good........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 7:05 PM DST

monte1111 profile image
monte1111

By the way, I hope you get 15 more years of fame. Enjoy.

Stevana profile image
Stevana in reply tomonte1111

Everybody has one. It’s the little punching bag that hangs from the roof of your mouth. It’s really useless anatomy that was interfering with my sleep. My regret is the doc told me it would heal in three days so I said why not? Turns out it’s going to be a much longer healing time and is quite painful to swallow. I’ll get thru it, but I didn’t need the extra misery I brought upon myself. Thanks for the condolences. Hoping you get 15 more years of fame yourself.

j-o-h-n profile image
j-o-h-n in reply toStevana

What is the purpose of a uvula piercing?

The jewelry will also pull the uvula down during sleep, reducing the diameter of the nasal airway and increasing the chance of sleep-related breathing disorders such as snoring. Uvula piercings may migrate leading to bisection of the uvula, which is harmless.

I'm Good........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 7:02 PM DST

j-o-h-n profile image
j-o-h-n

900 seconds of fame, 86,400 seconds of pain...congratulations?

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 6:43 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

Rent 525600 minutes that's the way to go!!

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

With Section 8.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 6:57 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

I figure you qualify for that

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

BLM-MF

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 7:07 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

I thought it meant Message Forthcoming...which it did come!

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

That's what I like about you, you're so Mighty Fine.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 7:26 PM DST

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

BTW the MF = My Friend....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 7:16 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

My Friend =My Brother

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

You know if you were my next door neighbor...............I would definately move.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 7:31 PM DST

j-o-h-n profile image
j-o-h-n in reply toj-o-h-n

We would be up all night breaking each others balls.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 7:32 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

For sure I cant sleep anyway

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

You wouldn't get off that easy..I follow you

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

I would commit murder just to get away and into the joint.....(Pelican Bay no visitors)...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 7:50 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

Not that easy .....Prison Reform....I will be there to greet you

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

Haahahahahah ugotme.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 8:11 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

I defer to my older brother

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

How old and is he good looking?

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 8:20 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

An ADONIS...Age plays no part

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

A VENUS...Size matters

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 9:41 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

He was you I have no brother

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

Doggonit, fooled me again........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 10:09 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

A rarity

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

I have a brother...... haven't spoken to him in years....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 10:20 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

I always wanted one...that's why I had for boys

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

That's a gift from God..... you're lucky... do they get along with each other?

The tennis pros probably are competitive.

The one in college is away.

And the fourth one sells drugs LOL

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 10:26 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

All pretty tight...college one home remote online farmingdale...2nd one just get married lives close by and works with college guy part time they do power washing....oldest runs tennis club and other 2 help out on occassion..before covid we all meet for dinner guys night out on fridays ...special times

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

That's a blessing..........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 10:52 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

It truly is....and my father lived across the street..he enjoyed them so much they were there almost everyday just pass away last year...I see him everyday too worked together 40 years

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

Last year.....so fresh in your mind..... Both your boys and your father were lucky. You working together for 40 years. When did you start at the age of 3?

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 11:08 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

Close 14....started business I went to school split sessions than to work to help ...my mom drove me

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

Nice hard working kid..... good foundation.....

Were you parents born here in the US (I know originally from Crooklyn)?...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 11:20 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

Yes both ...of course grandparents from Italy...immigrated here around 1920

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

Did you ever find your grandparents coming over here? remember I'm the ellis island expert.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 11:28 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

That's right thought of it when I wrote it...never checked it out...they didnt talk much about that experience...can you investigate

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

Sure.... it would be a pleasure.... since I enjoy it.... like detective work. So in a private message send me their surnames, first names and any info you can furnish me with. If you know their age or year when they arrived and etc. sometimes that's helpful. If they have common surnames it becomes more difficult. If it works out I can do the same for your wife's family if she wishes... I need some time to do the research and I may have to get back to you for more info. Anyway, I'll give it a shot.........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 11:42 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

Will do...I work on getting info and message you....good night long lost brother

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

ciao

Good Luck. Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 11:52 PM DST

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

Time for mangiare..... take care......

Bread and water....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 8:21 PM DST

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

Ruth Bader Ginsburg died (flash)

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/18/2020 8:14 PM DST

in reply toj-o-h-n

😫sad day for the court !

j-o-h-n profile image
j-o-h-n in reply to

I think you mean bocce....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/20/2020 3:18 PM DST

in reply toj-o-h-n

I love bocci

j-o-h-n profile image
j-o-h-n in reply to

So does the mob.............

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/20/2020 5:39 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

So true ...I have a bocci court in my back yard...always a mob there to play.

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

There's a big difference between A mob and The mob.....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/21/2020 5:42 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

Yes...It was a peaceful Mob

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

Lou Campi....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/21/2020 6:08 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

Dick Weber only he didnt play bocci

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

And he wore a glove.........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/21/2020 6:43 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

Black glove another Mob reference

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

Black hand...... M others A nd F athers I talian A ssociation...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/21/2020 7:02 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

It is just a friendly group interested protecting and promoting...family....meeting to have big family dinners and playing bocci

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

I agree.....but never let one of the guys in the family kiss you on the lips and call you Fredo......

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/21/2020 7:28 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

Yea I stay away from Andrew Cuomo

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

His Brother Chris.........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 09/21/2020 7:40 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

You right...I stay away from him too...one in the same

RalphieJr64 profile image
RalphieJr64

Wow!

Hey guy! How are you today ? Hang in there .💪

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