New Member with Common Concerns

[DrWrite]

New here, so hi to everyone. I'm about to start Provenge and a little nervous about the process itself (getting poked in the veins, lying there for 4 hours, and possible side-effects) and worried about the future, i.e. survival time. Any comments or feedback are most welcome.

[JamesAtlanta]

Glad you joined our group. Lots of help, support and insight here.

Would you please post information on your situation so we have a complete picture? Things like: PSA at diagnosis and currently, extent of mets (if any), your age now and at diagnosis, Gleason score, previous treatments, etc...

That will help our friends here offer you the best insight.

Good luck with your upcoming treatment. We are pulling for you!😊

James

[DrWrite in reply to JamesAtlanta]

Thanks, James. I'm dealing with mCRPC [metatsticized Castrate Resistant Prostate Cancer. My psa number is hanging at 20 and I have been through radiation which brought the number down for about a year, then when it went back up I was put on Eligard, which again brought it down for a while, but now it's up again and I'm about to start a round of Provenge.

[dlestercarlson]

I had the Provenge treatment about 2 years ago. It is pretty simple. Make sure you eat before you start and take something to read or watch while they are extracting your blood. When I had it done there were no side effects at all.

Good Luck

Dennis

[ewhite999]

I had the Provenge treatment about a year ago. Have no fear. The biggest issue for me was boredom. Both arms have IV’s in them so you can’t move them. I couldn’t use my laptop to do my work like I did during chemo. Listening to music on my iPhone with headphones worked best for me. Make sure you dress warm. No side effects afterwards.

[Schwah]

Any idea why they haven’t tried Zytega first? It was my understanding that there are drugs mine Zytega that generally are tried before Provenge.

Schwah

[RJ-MN]

DrWrite, I did the Provenge series in 2013, and like the others have said, there were few, in any, side effects. Something that made it more complicated for me, however, was "unsatisfactory" arm veins, which means they installed a double-barrelled Palindrome catheter into a neck vein and then tunneled it under a chest muscle to emerge above my right nipple. Inserting it and then taking it out when the series was completed were both "minor, outpatient" procedures which did require sedation. The daily cleaning of the emergence site, however, was a constant over the 2 months with continuous trips to the clinic. The up side was that my hands and arms were totally free during the leukapheresis and the reinfusion. Finally, something that happened to me that does not regularly happen is that the Dendreon return shipment for my 3rd reinfusion was overlooked at LAX and arrived at Mayo 15 minutes past its expiration time ... so I needed to do a 4th leukapheresis.

The series paused a PSA rise for a couple months but then it began rising again and I joined a clinical trial at the NIH that gave me enzalutamide (not yet FDA-approved) plus Prostvac Tricom. Even though PSA continued to rise, which is expected with Provenge, there is evidence that antigen cascade not only occurred but is still occurring. Hopefully all there intervening days have been helped to some degree by this training of my immune system.

[Magnus1964]

I went through the Provenge treatment 2 years ago. No side affects but I hated the tube sticking out of my chest. So happy when it was removed. The treatment worked for me. I had nodes in my lung. Don't sweat the small stuff.

[RustyDakota]

I can't offer any advice, but I just signed the papers today so we'll be going through his together.

The nurses didn't like the looks of my veins, so I'll be getting a central line. Hopefully that will probably be better than a lot of jabbing.

Good luck!

[DrWrite in reply to RustyDakota]

Thanks. I'm waiting to hear about insurance coverage. (I'm on Medicare and a supplement.)

Not sure what the 'central line' is. How is it 'better than a lot of jabbing?'

And good luck to you, too.

[charlesmeyers1964]

first of all i'm just ending my PROVENGE tx next friday and monday. if your veins are large enough to handle it sure but me i wouldn't take it in the arm. i had a port put in for the duration of tx and was fine. now as the 4 hrs i was at our blood bank for 2 1/2 get a tv makes it go faster. as for putting it in the first time 2 after that it was about an hour then there is flushing the veins etc so it was 1 1/2. i had no side effects at all from it but when i took lupron/eliguard i had only a couple of times with hot flashes so not much bother from any of this stuff so far.

[charlesmeyers1964]

iv

[DrWrite in reply to charlesmeyers1964]

My main [problem right now has to do with cost. I'd like to hear what the experience of others has been. Here's my story.

I went to the doc for my Xgeva shot today and was told I had to pay $399.12. That's going to be my monthly cost--it's 20% of the actual price [$1,995.60].

I then was told that the Provenge would cost $8,000 per treatment for each of the three sessions. [Actual price of the Provenge is $120,000.]

On the plus side, I will have hit my insurance's current out-of-pocket limit of $5,322.00 so the Provenge will cost me $4,264.56.00.

[charlesmeyers1964]

i told u its not 4 hrs mine was a port put in and 2 1/2 hrs and put it in 1hr 1/2,74,000 and i owe 0 so check with your docs pt advocate and see whats out there to help pay for your tx.

[DrWrite]

I don't wish to be rude, so please understand I'm only seeking clarification. I could not follow our reply due to the overabundance of abbreviations and absence of punctuation. Would you be so kind as to resend it.

[Kaliber]

hi brother, looks like you have come to the right place for information and camaraderie from guys just like you. Welcome to the group brother.

We often talk in abbreviations, you can usually find those listed in the upper right part of this page . Many if not most of us have developed cognitive issues / decline due to exposure to powerful drugs , + old age / a little senility and other reasons. All kinds of people enduring all kinds of things aPCa. ( advanced prostate cancer. ) there are large numbers here where English isn’t their first language as well.

The point being most of us are trying anyway, despite our circumstances and difficulties . You did just the right thing by asking for clarification. It all comes pretty easy pretty quickly, it’s all good.

Again welcome brother … this is the best group, filled with the most compassionate and understanding croakers ( people in their death spiral ) on the web.

❤️❤️❤️

[Derf4223]

You really ought to put some of your case trajectory, staging, initial PSA, Gleeson scores, genetic testing results, yadda yadda in your bio.

[Derf4223]

In the end, that fate comes to all. Thanks.