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.
Well I finally got my 15 minutes of f... - Advanced Prostate...
Well I finally got my 15 minutes of fame.
Sheesh. I hope it's true that what doesn't kill you makes you stronger.
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.
Brave or desperate, either way I'm in it too win it.
Hope is that it is deleting the p c?
Sorry about all the problems, hang in there. It sounds like it is getting better and you will get good response to the treatment.
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 😂😂😂😂💪💪💪👍👍👍🌸🦋❤️🌼🌈
I feel like I have been harpooned. But this too shall pass.
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 💪💪💪💪👍👍👍❤️❤️❤️
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. 🤣🤣🤣🤷🏼🥂
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 😂😂😂😂😂❤️❤️❤️
Hahah😂
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 ....
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.
Wretched experience. Positive thoughts going forward.
It’s clear you have a lot of positive thoughts being sent. Best wishes going forward
Costarica1961,
You are one tough lab rat more power to you brother!!
Stay strong and praying things improve!!!
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.
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.
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
By the way, I hope you get 15 more years of fame. Enjoy.
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.
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
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
Rent 525600 minutes that's the way to go!!
With Section 8.....
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 09/18/2020 6:57 PM DST
I figure you qualify for that
BLM-MF
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 09/18/2020 7:07 PM DST
BTW the MF = My Friend....
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 09/18/2020 7:16 PM DST
My Friend =My Brother
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
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
You wouldn't get off that easy..I follow you
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
Not that easy .....Prison Reform....I will be there to greet you
Haahahahahah ugotme.....
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 09/18/2020 8:11 PM DST
I defer to my older brother
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
An ADONIS...Age plays no part
He was you I have no brother
Doggonit, fooled me again........
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 09/18/2020 10:09 PM DST
A rarity
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
I always wanted one...that's why I had for boys
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
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
That's a blessing..........
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 09/18/2020 10:52 PM DST
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
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
Close 14....started business I went to school split sessions than to work to help ...my mom drove me
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
Yes both ...of course grandparents from Italy...immigrated here around 1920
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
That's right thought of it when I wrote it...never checked it out...they didnt talk much about that experience...can you investigate
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
Ruth Bader Ginsburg died (flash)
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 09/18/2020 8:14 PM DST
😫sad day for the court !
I think you mean bocce....
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 09/20/2020 3:18 PM DST
I love bocci
So does the mob.............
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 09/20/2020 5:39 PM DST
So true ...I have a bocci court in my back yard...always a mob there to play.
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
Yes...It was a peaceful Mob
Lou Campi....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 09/21/2020 6:08 PM DST
Dick Weber only he didnt play bocci
And he wore a glove.........
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 09/21/2020 6:43 PM DST
Black glove another Mob reference
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
It is just a friendly group interested protecting and promoting...family....meeting to have big family dinners and playing bocci
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
Wow!
Hey guy! How are you today ? Hang in there .💪