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Advanced Prostate Cancer
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Starting Provenge tomorrow

The central line goes in bright & early, then the collection starts midday.

They say it can provide a good benefit if done when the PSA is low. But we'll see if it can make a dent in my Gleason 10. Little to lose by trying.

I just took my last shower for November.

Nothing else to say about it, really. Just wanted to whine a little where people know what I'm talking about.

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Good luck. I had very few side effects with it.

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my only side effect was exhaustion for a few hours after the blood draw and also after the blood infusion(the kind of exhaustion that for me required passing out in bed for about 5 or 6 hours)....but other than that....it was easy. Hope things go well!

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I don't know what it's going to be like for you but I wish you well. This is a good place to whine. There is nowhere that everybody understands as well as here.

And it's not whining it's airing out ones emotions :)

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Since both arms have IV’s in them you can’t turn the pages of a book or type on your iPhone or laptop. I brought my headphones and binge watched bodyguard on Netflix. It made the time go by quickly. I had not side effects. Wishing the same for you.

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Good luck Rusty. I’m praying that it will work well and go easy. One question tho. I’ve not gotten to Provence (yet) but why no showers ?

Schwah

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No showers because my veins suck. I'm getting a central line. (Hickman catheter)

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I showered,covered over the catheter with cereran rap from the kitchen, be careful have a friend with you,the provenge does not lower the psa.after a little over a year some of my mets are dormant, some new ones, I had it after chemo, start jevtana next week,

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Good luck! We are praying for you! 🍀 🙏

James

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Good luck!

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Is your local treatment center doing the procedure or is one of the major cancer centers doing it? Did you have to "qualify" to be accepted for treatment ??

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I'm doing it at Dana-Farber. It was recommended because my PSA just started to rise. It had to be pre-approved by my insurance.

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Rode zytiga for close to three years. Went to .07 then rode it up to 990 PSA. Stopped when scan showed progression. Wanted xtandi but Medonc said no because of cross resistance. Only 10% chance to work. I convinced her to prescribe xtandi. Brought psa down to 5. Still on it for one and a half years. I feel Provenge made it work. Never had chemo, nearing nineth year from diagnosis. Alkaline phos 44.

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The climb to stop Zytiga how was it? slow, fast thank you

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Six months

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Does anyone know if you can be approved to take Provenge before castrate resistant and before ADT ? with just raising PSA?

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I am NMCRPC. When my MO started me on Erleada I asked about also doing Provenge while PSA was low and no detectable mets.. MO said that Provenge is approved (Medicare) only for MCRPC. That sounds really dumb to me. Why not get started on Provenge early, get the immune system revved up and maybe never get to metastatic prostate cancer

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That would be the dream, yes. Although they are showing very promising results, these immunotherapies are still in the gestational stage, that's why the trials are on patients with late stage disease. You wouldn't want to deprive someone with a possible 5,10,20 years of life left in case something went haywire. I had a conversation on this issue with my brachy guy a few months ago. It looks as though early stage CRPC trials will be starting up before too long. You didn't mention your Gleason, but if you're not even locally advanced, you're in a good position. So hang in there,

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I've been hanging for 22 years now. Original PSA 95 GS 7. Primary treatment was EBRT and Brachytherapy. That was good for about 13 or 14 years then had BCR. Since then had on and off HT. PSA now 0.7. Waiting for new blood test results. Hoping for undetectable PSA.

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if u haven't even treated your psa and go to the PROVENGE thats wrong in my opinion. i started with a biopsy first then went into the lupron shot/eliguard waited after the 6 month waiting ,psa started up didn't like the side effects of surgery then i did 35 days of radiation then for 10years after all the pills including zytiga which brought my psa down to 5.0 and couldn't get zytiga any more then i went to PROVENGE. i had a port put in not in my arm but by the collar bone then i found out later could have had bath, or shower. the biggest problem is when its being taken out 2 1/2 hours being still and when put back in 1/2 put back in till later its just trying to be quiet and that's not me. 6 wks of this. i had no side effects at all. remember it doesn't lower your psa all that much what it does is some lowering but its to build up ones immune system.

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Good luck man. Keep fighting!

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Provenge was a piece of cake, except for the three hours of no arm movement and History channel re-runs. I did feel a little exhausted after the first infusion, but blame that on the Benadyrl I was given. Opted out of the allergy meds the next two times! Zytiga on the other hand kicks my butt some days. Good luck!

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You will be getting fluids going back into your hand to replace what they take out it's no problem just boring. For all 4 hours of the collection you will get aquainted with the technicians. The only problem for me was with no hands free I had to go -my wife had to help me pee. They just pull curtains and give you a bottle.

After the process that day we went out to dinner at DiAmigos. Hope everything goes well for you. So far I've had 2 years of lower psa and still going. I'm g9 with multiple distant mets.

Larry E

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Easy peasy. Get a really good set of headphones a decent music player (I'm an audiophile...) sit back, close your eyes and experience every note. Assistants will help with volume knobs etc if needed. I feel asleep once or twice. Results? 7 years of surviving S4 g10.

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First collection is done.

The Hickman TriFusion catheter placement was easy enough (for me). It's not as gross as I expected. It made the collection nice and easy. It started to ooze blood part way through but the nurses leaped into action and applied pressure and changed the dressing. It's been fine since.

A visiting nurse is coming to the house today to change the dressing and show us how to do the daily flush.

Nothing really hurts. Overall: easier than I feared.

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I had RALP in 2008. Gleason 8. Stage T2a. IMRT in 2009 when PCa recurred. Started ADT in 2011 when PCA recurred. I had Provenge in 2014. Stopped ADT in 2016. PSA now holding at <0.006. I also had a port and had no side effects. Good Luck......

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to RustyDakota.... Remember "Rust never sleeps".....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/03/2018 11:44 AM EDT

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True. But I do.

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Rusty,

Due for my second draw on Monday. Side effects were minimal except for fatigue. Wishing you the best.

Jack

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Best wishes!

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I had six weeks of Provenge, every other week, for nodes in my lungs. The nodes shrank and are now stable. The only thing I didn't like is that tube sticking out of my chest. I was never so happy as when it was removed.

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Very best of luck to you

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Had my first re-infusion yesterday.

Got chills half way through, but kept going. They stopped when the infusion was done. Also got Lupron and Zometa. I was very tired when it was all done. Couldn't wait to get home and crawl into bed.

Felt tired but OK for the rest of the day. Didn't sleep well last night. Mild headache and dry mouth. Felt lousy this morning. Threw up once and immediately started feeling better. I'm pretty much OK now.

When's the next one? Bring it on!

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