Can anyone tell me their experience w... - Advanced Prostate...

Advanced Prostate Cancer

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Can anyone tell me their experience with Provenge? Results, length of time on it, follow up, side effects, etc. Thanks for all your help.

shipoo profile image
36 Replies

Your experience with Provenge.

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shipoo
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36 Replies
Magnus1964 profile image
Magnus1964

I was on the Provenge treatment a few years ago. It takes 6 weeks. You have to go to a medical facility that has a blood centrifuge. There they take out your blood and put it through the centrifuge to collect the white blood cells. The white blood cells are sent to Atlanta and the Provenge is added to them. This mixture is sent back to your local the following week and infused back into you.

This process is done 3 times for a total of six weeks. I didn't have a side effects, I just hated that port sticking out of my chest for the six weeks. I worked well on some nodules in my lungs. I have not had any problems since.

shipoo profile image
shipoo in reply to Magnus1964

Thayfor sharing your experience

ctarleton profile image
ctarleton

You can find several different versions of this question and anecdotal responses by browsing the pages of this Search result from this forum.

healthunlocked.com/search/p...

shipoo profile image
shipoo in reply to ctarleton

Great tip. Thanks

billyboy3 profile image
billyboy3

Too much secrecy from this firm, so beware.

shipoo profile image
shipoo in reply to billyboy3

What do you mean?

strummer profile image
strummer

husband had provenge in the spring. didn't need a port. no issues, just a bit time consuming. takes about 3 hrs each visit, 3x.

he followed it with xofigo and had his last trx last month. had good results on scan. his oncologist feels they compliment each other- a synergy of some sort.

shipoo profile image
shipoo in reply to strummer

Thanks for sharing his and your experience

Keep in mind Provenge doesn't impact PSA. So it is hard to really know how well it works. There are studies that show the sooner you have it in your diagnosis/treatment the more effective it is.

I decided to have it (03/19) in the expectation it will add time, and my insurance did cover it. Otherwise, too costly to consider. No real side effects.

shipoo profile image
shipoo in reply to HopingForTheBest1

Thank you. Was it effective in keeping your PC from spreading?

HopingForTheBest1 profile image
HopingForTheBest1 in reply to shipoo

Have done well so far, but no way of knowing it was specifically due to Provenge. More as a result of combo therapy.

shipoo profile image
shipoo in reply to HopingForTheBest1

Glad to hear that you are doing well. What treatment have you done after the Provenge?

HopingForTheBest1 profile image
HopingForTheBest1 in reply to shipoo

Ongoing ADT-Eligard, Xgeva for bones, and Olaparib-PARP as I am BRCA2+

leo2634 profile image
leo2634

I had it done June 2019 it is a fairly easy procedure just very long process in the first part. Collection of the blood for your white blood cells takes around three hours so make sure you use the bathroom first because they ask you to stay still. I didn't have the port put in they just took it right from my arms like giving blood. The process gave me bad chills after the Provenge was put back in a few days after each infusion. The third one was the worse felt like a bad flu only lasted a day. Good luck. Leo

shipoo profile image
shipoo in reply to leo2634

Sorry for your side effects but thanks for sharing your experience

shipoo profile image
shipoo in reply to leo2634

Did the Provenge stop or slow your PC progression? What treatments have you had since Provenge?

leo2634 profile image
leo2634 in reply to shipoo

Provenge from what I have read doesn't affect the PSA it is an immunotherapy that boost your own immune system to help your body fight Cancer cells. My PSA has been 0.1 for going on three years with Generic Zytiga, Six month Eligard injection, Provenge, and Xgeva for bone mets. I've never had any other treatments. Leo

I had the procedure done in 2014 with no complications. I had a port, so no vein issues. Diagnosed in 2008, age 67, Gleason 8, RALP, IMRT, ADT, 2 biological recurrences. In 2016, I went off all medication and treatment. My PSA has remained at <0.014 and T around 40 for the last four years. Good Luck. Clint

shipoo profile image
shipoo in reply to

So happy to hear a success story. Thank you.

billyboy3 profile image
billyboy3

I go back a long way with this company. I found them particularly money driven rather than what I would call, coming from the heart. It is now impossible to get information directly from them etc. i.e. they have become far to secretive in my view and a complete change from their early days.

I have not reveiwed any data for some time, so have little knowledge of how well, and if the treatments are working and worth the high cost-in all senses.

A MESSAGE TO THE TROOPS:

Does anyone have inside information or otherwise on the firm that holds the patent on provenge? Please advise us asap. -let's see what comes up from others.

In the meantime, good luck and please keep us informed etc. and also let us know if you are able to crack the web around them!!!!!

j-o-h-n profile image
j-o-h-n in reply to billyboy3

When I oogled google this is what I got :

Those kinds of issues finally overwhelmed the company, and in 2014 it declared bankruptcy. Valeant Pharmaceuticals Inc. acquired its assets in 2015, then sold it to a Chinese company, Sanpower Group Co. Ltd., in 2017.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 10/30/2020 5:40 PM DST

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

Ugh...Chinese. I'm trying to buy American.

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

Even the Chinese are trying to buy American....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 10/31/2020 9:37 PM DST - Treat or Trick

Yank66 profile image
Yank66

DH had immunotherapy in May. Dr says it adds about 2 years to survivability. He also advised us not to pay too much attention to the PSA readings. Denny’s PSA went up to 76 (from 14 ) before Xtandi was added about 6 weeks later. It is thought that the PSA increase was due to dead cancer cells releasing PSA into the bloodstream. Thankfully, his PSA has dropped down to 14 after two months on Xtandi. We’re hoping to get a long run from Xtandi.

shipoo profile image
shipoo in reply to Yank66

Love to hear about good results. Wishing also he has a for a long run withXtandi

billyboy3 profile image
billyboy3

thanks John, again, we simply do not have nor can I find detailed information on what is going on etc. In other words, if it is working, surely, they would blast this result from the rafters, instead we find ZERO out there.

AGAIN, ANYONE ON PROVENGE, please get us some information, results on the effectiveness of treatments etc.

ctarleton profile image
ctarleton in reply to billyboy3

These references to studies done more recently than the original approval studies might help somewhat.

targetedonc.com/view/realwo...

businesswire.com/news/home/...

acsjournals.onlinelibrary.w...

shipoo profile image
shipoo in reply to ctarleton

Thanks for the studies you sent. Much appreciated

David20451 profile image
David20451

I had the Provenge treatments a few years ago. Didn't' have a port. It depends on your veins. By the third series I'd had about enough. No serious side effects. As to outcomes, who knows. Tip: Bring a reader with an audio book. It helps to pass the 3-4 hours of each session.

shipoo profile image
shipoo in reply to David20451

Thank you. Good tip to pass the time with an audio book.

billyboy3 profile image
billyboy3

well ok thanks for that update. My concern, among many with this is that the doc came from the U of Washington, which was the home base of Denderon- Provenge at is inception. I cannot find very much in terms of results from other centres, so i.e. if this was such a help, i.e. worked, would we not then expect a great deal more findings etc. being reported???

Or, is this a case of them making money off of our lives????

It is long overdue that ALL firms who are peddling us drug treatments, be held accountable and ALL results from their respective usage, be made public, without our having to dig to hell to get them.

Further, it is also overdue that ALL firms who get government money for research, also be held accountable by a measurable standard.

We are the victims here, we are the ones whose lives are at stake, we are the ones affected by this, so we need to become a stronger voice into getting something done to force ALL medical researchers, who engage in advanced prostate treatments, to come clean with their results etc.

Do I have support on this???? And if so, please send details on what we should do to change the way the game is being played, using us as the chips!!!!!!!!

RayTrevitt profile image
RayTrevitt

I had three sessions in April 2019. My doctor says he doesn't understand what t does but that it extends life. I have had no side effects from Provenge other than being a little tired on the day of the infusion. I had HIFU, three Turps, 9 weeks of radiation, 18 weeks of chemo before Provenge. Effects of each lasted about 6 months. While my PSA was undetectable I had a large outer wall chest tumor that was removed but but came back in 6 months. It went away with 9 months of Xtandi, but tumors and enlarge lymph nodes in groin appeared so we tried Zytega and Prednisone for 6 months to no effect and Apalutimide for a month also to no effect. Starting Keytruda infusions on Monday. Oncologist is very hopeful. So we'll see.

Craigslife profile image
Craigslife in reply to RayTrevitt

Good luck with Keytruda. There are many amazing positive stories from people that have taken it.

shipoo profile image
shipoo in reply to RayTrevitt

Thanks for sharing your experience. Hope the Keytruda works for you.

I just finished provenge a few weeks ago. Like some other replies, I had the blood drawn from my arms...but had the treated cells done through my chemotherapy port...no side effects at all.

shipoo profile image
shipoo in reply to

Happy to hear you suffered no side effects.

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