Provenge

[Peterd110]

Thursday I will be getting my venous access so I can start Provenge. Have been on Zytiga and a clinical trial with Xtandi. PSA is up to 18

Does anyone have any details of their experience with Provenge to share with me? I’m nervous

[Tall_Allen]

I've sat with a patient during. It's just boring. The leukapheresis takes about 3 hours. He received benadryl when the amped-up cells were re-infused. He felt a little achy afterwards for a few days after the 3rd infusion.

[Kaliber]

Don’t be nervous... what could be worse than your genitals shriveling up and giant man boobs ? Not to mention the hot flashes, weakness , muscle pains and etc. .... you’ve already experienced with Xtandi .... you are already a seasoned tough guy .... you got this.

The other guys here can be more specific but I’d guess you’ll be just fine.

💪💪💪💪💪 🌼🌸🌸🌻🌈🌵

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

And finally don't forget when someone points out that your posts are getting weirder and

weirder...

💪💪💪💪💪 🌼🌸🌸🌻🌈🌵

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/16/2020 12:30 PM DST

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

Coming from the Master I consider that a profound compliment.... thank you buddy yayahahaha. ❤️❤️❤️

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

Actually I was posting about myself..... Thank you too....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/16/2020 1:46 PM DST

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

About everyone on here would agree that “ you da man “ buddy ... you do it all , all the time. Acutely funny to uplifting and all in between. You got the “ stuff “ ( I’ve got different “ stuff “, I wish I could get rid of mine tho yayahahaha).

I said that !!! 👍👍👍

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

What do mean "About everyone on here"??? Geezamacripe you know how to hurt a guy....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/16/2020 6:13 PM DST

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

Yayahahahaya yayahahahaya .. that’s what I’m talk’ in about yayahahahaya.😂😂😂😂😂

[VictoryPC in reply to Kaliber]

You tell it like it is...

[Kaliber in reply to VictoryPC]

🙂🙂🙂🙂

[Hidden]

I have no experience (yet) but I have been approved for Provenge and go to my Doc tomorrow to discuss and schedule. I guess we’re going to go through it at the same time.

[Hidden in reply to Hidden]

I went through the process for the first time last Friday then Monday. It was a really boring process. A big bore needle in both arms for the white blood cells...a 3-1/2 hour process (4 hours total). Hooked up to the machine, there’s nothing you can do but watch tv or listen to a book. I basically couldn’t move my arms to do anything else.

Then Monday they put the super WBCs back in...took about 2 hours total...I slept for about 1-1/2 hours of it.

It was uneventful and no bad side effects...I felt a little cold...that’s about it

Hope it does something positive...I’d like to put the beast back into remission

[RayTrevitt]

I went through Provenge treatment in April 2019. It was very boring but it took long enough for me to watch two full movies. I had no real side effects other than needing a nap when I was done. My oncologist says that no one really knows how it works but I am still alive and strong so I seems to be working for me.

[Peterd110 in reply to RayTrevitt]

Thank you!

[ctarleton]

Just relax into it. If you have some "tunes" with you, it could help the time go by. If you may have had a Port or a PICC line installed, you will have "hands free". Otherwise, there will be a withdrawal vein in one arm, and a return vein in the other arm, with the blood circulating through the leukapheresis machine. You may have to stay a bit still to keep the machine happy and free from beeping at you. Maybe squeeze a little rubber object, too, to help circulation. As T_A mentioned, boring. The blood cools down a little outside the body, so feel free to ask for a nice warm blanket. Otherwise, it's a lot like being on a nice couch with your feet up out on the cruise deck. Allow the technicians to pamper you.

A relatively rare side effect of leukapheresis involves a citrate anticoagulant used to keep the centrifuge/parts in the machine working well. The "return" blood can sometimes lower the calcium level in the blood a bit faster than one's body can adjust for it. If you feel any initial symptoms during the 3 hour period involving a little bit of tingling sensation around the lips or nose, or a "buzzing" kind of phantom sensation, that's probably what it is. Just tell a technician. They may give you a few Tums to eat, as they routinely check your status every 15 minutes or so.

I had Provenge about 4 years ago. I felt tired and a bit weak for 2-3 days after each of the re-infusions. Enough for me to subjectively imagine that my body's immune responses had been "amped-up" to some degree.

[Peterd110 in reply to ctarleton]

Thanks for all your information. I really appreciate you.

[Newyork6264]

Good luck with the treatment Peter.

[Peterd110 in reply to Newyork6264]

Thank you !

[GrizzlyMama]

My husband is about a week ahead of you. He had a Central Venous Catheter placed last Friday and had leukapheresis today. He’ll have his first Provenge treatment on Friday.

The leukapheresis wasn’t too bad. They gave him 6 Tums prior to and 4 during. My husband said he feels a little weird, like his body is trying to fight something, but nothing major.

[Peterd110 in reply to GrizzlyMama]

That’s good to hear. I’ll follow you if you don’t mind.

[Nicnatno]

My 3rd and final treatment of Provenge was January 2020. It rakes 3 hours for the Leukopherasis. When it was done I was dehydrated. I brought Gatorade for each one. No side effects occurred.

Nick

[Peterd110 in reply to Nicnatno]

Thanks for the info!

[harryb48]

Piece of cake, just make sure you go to the bathroom and blow your nose before you start. I watched about three hours of the History channel each time and only required a tums on one occasion. Good luck!

[Peterd110 in reply to harryb48]

Ok, will do. But Why blow my nose?

[harryb48 in reply to Peterd110]

Because if you get the sniffles during that three hours you can't move your arms, someone else has to help you.

[Yank66]

My husband completed the Provenge regimen in July. Leukopherasis was done at the Red Cross Center where he was treated royally. Take the Tums so calcium remains adequate. He had a slight fever and fatigue on the 2-3 day after the infusion.

He did have some bleeding around the central line which we blamed on overactivity (lifting, cutting wood). They told him “ no restrictions”, but maybe they weren’t used to such an active guy. His home health nurse had to come out several extra times to redress the central line. We were advised to ignore PSA readings (which rose from 10 to 76). Both of us were very careful about possible exposure to others. We felt fortunate to have immunotherapy done during a pandemic.

[GrizzlyMama in reply to Yank66]

The “no restrictions” is not realistic. We ended up at ER on a Friday evening because my husband got too sweaty working in the yard and his dressing came undone, exposing the catheter. Thankfully, they made him a priority and we were in and out in less than an hour!

[leo2634]

Make sure you pee before the first part of the treatment. Once you're hooked up to the machine it feels like forever to get done. The infusions are about an hour a few days later. My first one had no side effects, second one was chills and shaking, third was all out flu symptoms. The good part is I went home got covered with four blankets and woke up in a few hours back to normal. Dont worry its not that bad at all. Leo

[Peterd110 in reply to leo2634]

Thank you!

[Magnus1964]

I went through the Provenge protocol. It's boring. Takes a long time to separate the white blood cells. Take your cell phone for music or email, or read. I thought the worst was that tube sticking out of my chest. I was never so happy as when that tube was removed. Provenge worked well on nodules in my lungs.

[MateoBeach]

I’m in the lineup for Provenge this month also like some others here. This is my 2nd time. Had it in 2012 and am doing so well decided a booster series would be a good idea. Piece of cake. Take a good book or download some movies to watch. Go little ninja PCA fighting T cells!

[Peterd110 in reply to MateoBeach]

I have been wondering if you could get additional treatments later on

[Blueslover]

It's really a breeze once the central tube had been placed, which is easy too. MUCH easier with the central access. Had a few chills with 2 of the 3 infusions, but no biggie.

Hugh

[Shepard]

The leukapheresis was the most challenging for me. I ate at least half a bottle of tums to counter the numbness of the lips and near fainting. In my opinion, the process was rushed the first and third time. I had a different "tech" for the second who slowed the flow when I showed side effects and it went much better. I suggest you wear a pad. I really soaked it the first time. For the remaining two I wore an external catheter which removed that worry. The infusion process was a breeze with no side effects. You should get along fine.

[Peterd110 in reply to Shepard]

Thanks for the advise

[VictoryPC]

You guys are the toughest....

[V10fanatic]

I experienced pretty bad "buzzing" and required a calcium drip all 3 times. I'd suggest you don't let the feeling get too pronounced before you speak up. No other side effects besides slight flu like symptoms a few days after the 3rd re-infusion.

[Peterd110 in reply to V10fanatic]

Should I take some extra tums and fluids a few days prior to?

[V10fanatic in reply to Peterd110]

It might or might not help enough. I took Tums and binged on yogurt leading up to it. Too much fluid and you'll have urination issues without a catheter or pads.

[Peterd110 in reply to V10fanatic]

Gotcha

[j-o-h-n in reply to Peterd110]

And don't forget the pornos (don't leave home without them)....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/16/2020 6:16 PM DST

[leo2634 in reply to Peterd110]

They have the Tums on hand. I suggest you ask for the Calcium drip as soon as the tingling starts to get pronounced it works much faster than Tums i got it all three times works great. Leo

[tallguy2]

I did the three Provenge infusions two years ago. It is as others have stated. No side effects that I was aware of. The doctors will inform you that PSA will no longer matter. Not in my case. (Scans showed a reoccurrence in lymph nodes and one bone met.) a rapidly rising PSA will demand action.

Best wishes!