The following was posted on the Malecare Advanced Prostate Cancer Health Unlocked online support group. I have received permission to reprint it here because it might be helpful to some of you.
FYI- Provenge is a cancer vaccine that helps to mobilize your own immune system to your prostate cancer. It is currently only approved in the United States for men who castrate resistant.
It is administered by first removing a bag of your white blood cells, sending them off to a factory in Seale Beacj Calif. where the white cells (T cells) are altered by having a protein placed on to their surface. These changed (supped up) cells are then re-administered into you by an infusion.
Just finished my Provenge treatment. Here are some tips:
1) Go to the cell collection point before you have the first collection. Make sure that you have good veins in both arms. If not, you’ll need a port. No sense gearing up for the first collection then finding out you need to get a port inserted.
2) My instructions said I would have “limited mobility” of my hands. Should have said “no mobility”! They literally tape your hands down to the arm of the chair. Makes sense; they don’t want the needle popping out and pumping your blood on the floor. However, this means no books, phones, tablets, etc. to keep you entertained.
3) So while you are there (see #1) ask if the have a TV or DVD or something. Also see if the setup allows for someone to sit next to you for some conversation (mine didn’t). I listened to audio books and music on a playlist.
4) You will be strapped in a chair for about 4 hours and can’t get up at all. So plan ahead. If you will need meds to get through this (like a bad back), clear it with the collection folks before first collection.
5) Clear your schedule after collection. Provenge will be flown in on the third day after collection – it must be used within HOURS after arrival.
6) If you can’t make it for the 4 hours, you still may be able to get treatment. The treatment needs at least 100mL of cells, which take about 2 hours to collect. However, like they say, the more the merrier.
I didn’t write this to discourage people, but I felt the information I got “glossed over” some of these details. Forewarned is forearmed. The collection itself is painless (except for the needle stick), but boy, did I have to pee after the first one! Too much coffee.
My only symptoms after the infusion were cold-like and could be controlled with Benedryl.
There isn’t really any way to know if this is working but my oncologist with very bullish about it. I figured what the hell, Medicare was paying so let’s give it a go. Which leads me to my last comment.
This treatment is already controversial due to it’s high cost ($110,000). Looking at the incoming president’s cabinet choices, I wouldn’t be surprised if you will have to pay part or all of the treatment cost in the future. If you’re thinking about doing this, I’d do it now.
There is a lot of additional information about Provenge on this blog (search for Provenge) as well as a podcast that I did a few years ago with Dr. Neal Shores. To listen to this podcast as well as the many others you can download the Malecare App at: https://appsto.re/us/fHFBgb.i Other podcasts include things like Living with A Cancer Diagnosis, Medical Marijuana, Creating A Health Log, etc.
I appreciated readhing this
my husband is at this time done with the first 2 white blood cell taking and next week we finish the 3rd and final
His only possible side effects are fatigue but he is still able to work at his job 3-4 days a week but it is a maintenance job and not too physically demanding. It has not affected his appetite, however at the infusion location there is no food or snacks and it is approximately lunch time ; so I learned it is wise to take sandwiches,fruit snacks,etc. as it is a long time. I might add that his fatigue seems to be less now. We get lab the 28th and after that we should know where he stands.