My husband, Jim, has been on Zytiga since May 2019. His PSA started rising in December 2019 (0.6) and continued to double (1.4, 3., 6.2) every few months. We had discussed Provenge, but held off due to COVID-19. However in August, his PSA was up to 12.6, so we opted to begin Provenge. His PSA in September was 18.7.
This is his experience:
CVC-Jim had a Central Venous Catheter placed on 9/11/20. (His left arm veins were damaged from Chemo.) This was probably the hardest part for Jim as he never wanted to have tubes sticking out of him. The first 3 days were difficult and painful. His neck was extremely tender, he couldn’t get comfortable, and had difficulty sleeping. The CVC definitely affects QOL. Thankfully, it’s temporary.
Leukapheresis-He had leukapheresis #1 on 9/15. He had great nurses and they provided everything he needed to make him comfortable-warm blankets, movies, headphones, snacks, water. The few side effects Jim experienced were: 1) about an hour in, he felt cold on the inside. He was given a large heating pad to place on his chest, which helped. 2) about 2 hours in, he said his stomach, intestines, liver, etc. we’re cramping. The nurse said it was probably due to the blood being put back in at room temperature, which the body doesn’t like. I stayed with Jim during the entire process. The infusion process is fascinating to watch. After the infusion, the nurses changed his dressing on the CVC.
FYI: Jim prepared for leukapheresis by drinking at least 64 oz of water for 3 days prior as well as continued taking a calcium supplement. He ate a light breakfast. Prior to leukapheresis, Jim was given 6 chewable Tums. Halfway through, he was given 4 more. Thirty minutes before infusion began, he was given Benadryl and 2 Tylenol.
Jim said he felt a little weird, like his body was trying to fight something, but nothing major.
Provenge-I wasn’t allowed back with Jim. He told me it was uneventful. No side effects or reactions. He was in and out in 1 1/2 hours. He did tell me they gave him Benadryl and 2 Tylenol.
We continued the Benadryl and 1 Tylenol for the next 24 hours.
Other: Since beginning this process, Jim has been extremely fatigued and rests in bed a lot. Today, he mentioned he feels cold on the inside and cannot warm up. It could be the Provenge or the stopping of Zytiga and Prednisone, which his oncologist recommended.
Will keep you posted.
When is Provenge indicated? 
Chemo After Provenge?
Moving forward with treatment: Xtandi and Provenge
