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Beginning Provenge 5/15/20

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Posted 5/12/2020 11:42 AM (GMT -5)
DH will have his first leukapheresis for Provenge on Friday with Provenge infusion on Monday, May 18. His central line was put in last week, and he has increased his calcium intake in preparation for the procedure. Unfortunately, his PSA rose quickly since January when it was 5.6. It was 14.6 in April and 19.4 two weeks later. We know he has two spinal mets at L2 and T3. After a 6 year run on Lupron, it's time for something else. We feel fortunate to get immunotherapy scheduled during the Covid19 mess. Interestingly enough, this will take place at the Red Cross headquarters in Richmond, VA. (about an hour from our home.) Not sure if this is typical--nothing seems typical right now. Any advice for either of us?
Beth
Posted 5/12/2020 12:52 PM (GMT -5)
Todd1963, and a few others on the forum are the resident experts having used Provenge. I just read that Dendreon has treated more than 30,000 in the 10 years since FDA approval. Hopefully some will step up and provide some advice as to what to expect. It is good you could get it scheduled and it makes perfect sense to me that the Red Cross would be doing this rather than a hospital or chemotherapy infusion clinic, given their current limitations. Good the Red Cross could be set up for this purpose. As I understand, his blood will be sent to the processing center south of Atlanta. Hope it works and is well tolerated.
Posted 5/12/2020 8:28 PM (GMT -5)

Hello, DYANK --

I'm thankful your PROVENGE treatments are within a relatively easy driving range. That will make treatment days easier.

Our long-time member, Todd1963, led the charge here, when PROVENGE treatments were fairly new.

Best of all, you can click on his health signature, and access his written blog. His first entries will document his PROVENGE treatments.

As well, go up to the SEARCH icon at the top of your screen. It likely looks like a magnifying glass.

Conduct a search for the term "PROVENGE" --- and you can easily go back into the archives, and read a vast array of first-hand accounts.

Heading into a new treatment, that's what is so helpful ---- reading a range of first-hand experiences.

There's always something NEW and HELPFUL to be found in those first-hand experiences.

Hoping your PROVENGE treatments go well! Keep us posted, DYank!

Here's to the good fight, and here's to fighting!
Cyclone - # Iowa State University
Posted 5/15/2020 9:40 PM (GMT -5)
Beth, how did the 1st leukapheresis procedure go? Did he experience any symptoms of "citrate toxicity" during the approx. 3 hour procedure while his blood cells were collected by the machine?

The citrate is used inside the machine to keep its centrifuge flowing freely during the cells separation and collection procedure. When the blood returns to the body, sometimes the body cannot keep-up with the chelation of the calcium that happens when the blood from the machine goes back into circulation. Mild symptoms can include some tingling sensations around the mouth or face. The technicians usually check on you and make log notes every 15 minutes, and may have you start eating Tums tablets to help get you closer to a good calcium balance relatively sooner. When I had mine done several years ago, I did not have a port, and my arm veins got pretty beat up with the large gauge needles in there for 3 hours at a time. My symptoms also progressed to a bit more citrate toxicity. After about an hour I seemed to feel the couch beneath me vibrating, when in fact it was not. Toward the end of the 3rd hour I felt like a whole body "buzzing" was going-on. At the same time, other men sitting right next to me and doing the same thing had virtually no symptoms at all. Anyway, I was glad to have someone with me to drive home afterwards.

As for the infusion of the Provenge itself, I did not have any undue reactions in the infusion center while it was being administered. I was happy to have someone drive me there and back, though. I did feel Very weak and tired for a few days after each infusion. It felt to me like something was definitely happening with my Immune system. Not long afterwards, I added Xtandi, and am still on it after another 3 1/2 years.

Keep us posted.
Charles

Post Edited (CuriousCharles) : 5/15/2020 8:43:18 PM (GMT-6)

Posted 5/16/2020 3:48 PM (GMT -5)
Charles,
Things went well yesterday for the leukapheresis. Denny did have some tingling in the lips and started chewing Tums right away. He had been adding calcium rich foods and Tums to his diet all week, so maybe that helped prevent any worse symptoms. He was the only patient in the pheresis facility, so I could stay with him. He had the undivided attention of two young nurses. They mentioned that more patients are having central lines put in to save their veins from the large needles. He was so happy to have the use of his arms. You may know the "gotta pee" symptom many guys have. Oh, and having Netflix and Prime video helped to pass the time. Today, you'd never know he had anything done. Hope Monday goes as well.

We appreciate the encouragement of all you guys. Glad to hear the Xtandi has worked so long. It's what's likely to be next at this point.
Beth
Posted 5/18/2020 1:38 PM (GMT -5)
Hi Beth, my husband just finished Provenge during COVID 19. In take was at the Local Red Cross. We thought this was odd as well. The only issue was having to stay still for hours without moving his hands and of course the amount that the hospital billed our insurance. Our insurance paid $126,734.92 per Provenge visit. Just unreal.
Posted 5/18/2020 7:47 PM (GMT -5)
Compliments of the Benadryl beforehand. Denny slept through most of the infusion today. He's been fine today, and I am hoping he will feel okay tomorrow. I had to wait in the car, for the 2 3/4 hours it took. It was cool and drizzling, which helped. Because of Covid19 closures, there's nowhere else to hang out.

Mrs. BD: Glad Denny had the central line and had use of his hands. We have good insurance and were never told the total cost of Provenge. I had read it was about $120,000--but I thought that was the total, not each session. Unreal is right!
Beth
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