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Approved for Provenge

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Prostate Cancer
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Posted 3/25/2017 5:25 PM (GMT 0)
Just a quick update. I was approved for the Provenge therapy which I will start in a couple of weeks. It appears my veins can't support the procedure so they must connect a apheresis catheter in my chest.

When I read about Provenge, you really get a mixed bag of comments. In turn, you begin to question whether this treatment is right for your situation. It reminds me of movie Forrest Gump and his quote of "Mama always said life is like a box of chocolates. You never know what you're gonna get." In my case and others like myself, we have to hope we made the right choice.

After reading Todd Seals blog, "Living with Prostate Cancer", I decided I wanted to use every bullet in my arsenal to defeat this disease that we all hate. If you haven't read his blog, I urge everyone to do so.

Lee
Posted 3/25/2017 6:11 PM (GMT 0)
Tn.Lee
I'd guess that 80-90 % of our brothers on this site do not have mets, so from one advanced PC brother with mets to another-Keep on the Provenge path, you were fortunate that you were approved. I would have given my left nut...oh wait I already did, but I did not get approved or even recommended for Provenge by my Onc, who has to follow strict step by step recommendations. I applaud anyone who thinks outside the box, I wish you the best , keep the faith and don't let naysayers influence you.
Todd is what some consider a rock star in this fight , and I follow him whenever I can. His blog is truly inspirational.
Wings aka Dan in So Cal-80 degrees
Posted 3/26/2017 1:30 PM (GMT 0)
Congrats! That is good news.

As a recurrent PCa Club member but no mets (yet), your info is on my radar.

I imagine that at some point down the road, I'll need to add something to the Firmagon and Xtandi combo that's working now.

Please keep us posted as you begin the Provenge treatments.

Best Wishes.

Tony
Posted 3/26/2017 1:38 PM (GMT 0)
Good on ya Tn.lee, for being aggressive and plowing forward. Good luck with the treatment . May you be yet another success story among us
Posted 3/26/2017 2:26 PM (GMT 0)
My personal "Thanks" to Wings of Eagles, TonyInVirginia Beach and Pratoman and to all those that participate in this meeting place. Your words of encouragement is a powerful therapy for all of us with PC.

Thanks...Lee
Posted 3/26/2017 5:11 PM (GMT 0)
Tn, Lee,
Provenge is not to bad. I had mine last summer. MY veins are good so tuesday at 7:30am was at red cross here in Raleigh (because they had the unit to separate the white cells from my blood) the nurse very nicely inserted an 18 gauge needle in my left forearm to pump out my blood, hurt like heck taped my arm down to the infusion chair so I would not move my arm, then did the same to my right arm to infuse the blood less my white cells back into me. Took 3 hours, I wore a depends of course. She put on a good movies and there I was. Then they fedex the cells to the company in Atlanta they made them I believe T-cells and they came back to my doc office friday am and they infused the slurppy, it was simi frozen into my arm about an hour. Then skip a week for my veins to heal then again then skip a week then a third time. I got sick as a dog after it was all over but only lasted one day. I have no idea if it worked. My psa has doubled since Sept. 2016 and I have blood work this tuesday and see where Iam at. Like you say Tn. Lee use the bullets you got what the heck cant take then with you.
Hey Wings so 80% of the guys here have no mets? wow I did not know that. I would be willing to share some, LOL Na I got what I gotts, its all good. Thanks 80 degrees in Southern Ca. Well we will be there soon in Carolina.
Posted 4/12/2017 12:49 AM (GMT 0)
Tn, Lee,

I'm a bit late with my reply--sorry about that. I'm also in TN. I just had my final Provenge infusion yesterday. My veins were okay to use, so I spent 3-1/2 hours every other Friday afternoon hooked up to a blood-sucking centrifuge. It was uncomfortable--especially in terms of my bladder! But I made it through all three. A few days after the second infusion, I got hit with fatigue, so I'm expecting this third round to be similar or worse. It's a challenge since I'm still having to work full time.

Of course I'll never know if the $100k treatment makes any difference or not. Meanwhile Xtandi has brought my PSA back down, so I'm hoping the my bone mets feel shy for awhile. Last year was diagnosis, ADT and chemo. This year is 2nd round ADT and Provenge. I'm hoping for a reprieve for awhile so I can focus on living.
Posted 4/12/2017 1:27 AM (GMT 0)
Hello WaterUnderTheBridge,

I appreciate you commenting on this for me. My veins weren't able to handle it so they put in a "temporary port". I had my 1st removal of white cells yesterday and get my 1st infusion on Thursday. Thanks for forewarning me about the fatigue.

I hope you do well with your therapies and look forward to seeing you again on healingwell.

Thnaks...Lee
Posted 4/12/2017 3:27 PM (GMT 0)
Tn. Lee:

I recently completed my last round of Provenge. The worst part of the procedure is sitting still for 3.5 hours on "extraction" day. Be prepared for some bathroom issues. I generally felt a little fatigued after extraction, and on "infusion" day I was tired because of the IV Benedry given before infusion. Otherwise it was a non event for me.

We won't know if it works until it works, if that makes sense. It doesn't lower PSA but enhances all treatments.

I recently began Xtandi and hope for a PSA decrease at my next test.

Good luck.
Posted 4/12/2017 6:20 PM (GMT 0)
TN. Lee. Congrats on your approval. May your road be smooth as mine was. I slept 24 hours after my first infusion. I must have been tired. The port will be nice. Keeping your arms still for so long is rough.

Provenge activates the 25% or so of white blood cells that come back to
You to seek out and destroy prostate cancer.

Keep us posted bro!
Posted 4/12/2017 11:04 PM (GMT 0)
Thanks Todd,

I appreciate you taking the time to post. I have read your blog, which I follow, and your google+ pages.

Lots of respect due you for sharing with others and being a spokesman for Provenge. It helped me to decide whether to consider this treatment. I am like you, we both need all the bullets we can get and I hope and pray they come up with more treatments for those of us battling metastatic prostate cancer.

Good luck and God Bless

Lee in Tennessee
Posted 4/13/2017 1:34 AM (GMT 0)
Tn Lee,
Just a thought you might want to wear a depends 3 hours was way to long for me. The infusion day to me was about an hour and a half. That is a piece of cake. Let us know when your done. Tomorrow 1/3 done and let those t-cells work their magic.
Good luck.
Posted 4/13/2017 1:49 AM (GMT 0)
Hi Thomasjohn,

I really appreciate your post. Tomorrow will be my 1st infusion and I can't wait to get it going. Nothing has been done since they discovered the bone mets in early March so of course I am apprehensive. That's also when my PSA starting going crazy as well, so I am ready. smilewinkgrin

Once again thanks, and I will let you know how everything goes for me. Hope that Zytiga keeps whipping butt for you. Got a feeling my Dr. is going to try me on it.

Good Luck
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