What is immunotherapy treatment like?

What was your immunotherapy treatment like? How were the side effects and how long did they last? What advice would you give to others?

Community Answers
  • Sam Collins
    3 weeks ago

    When I started Provenge treatment they would send me to the blood bank in this city. They had two of the machines that could take out my blood of one arm, spin my blood to remove my white blood cells and put my whole blood back in the other arm minus millions of white blood cells. They used large needles and I asked them why. They told me that if they used smaller needles that it would crush the cells at the speed they were coming out of me and being put back in me. The whole procedure took two hours and you could not move your arms. It would cause a tingling around your mouth and they would give me a couple of Tums and the tingling would stop for a bit. By the time the two hours was over I had eaten a lot of Tums. I would go have that done on a Monday and I would go to a cancer clinic on Friday to have the white blood cells put back in one of my arms. They would send the white blood cells to a lab somewhere and had to be at the cancer clinic when they got there. One day I had to wait 5 hours before they came in by plane. Then they would give me some prednisone before putting the white blood cells back in me. The first time they gave me too much prednisone and I couldn’t keep my legs still because of the tingling in them. Then they would inject the white blood cells back in me by I.V.. I was told that at the lab they would inject something into the bag of white blood cells that would train them to recognize cancer cells in me and kill them, but it wasn’t a cure. The first session I started freezing on the way home. I had a coat on and was shaking. I finely warmed up and then started feeling really bad so I went to bed when I got home. I can’t remember how long but a few weeks later we did it all over and one other time after that. The side effects weren’t as bad the next two times. They told me there was no sure way of telling wether it worked or not, but I was willing to fight and take the side effects. You never know if you don’t try.

  • ninaw moderator
    3 weeks ago

    Thanks for commenting, @sam-collins, it’s important to have this firsthand info. It sounds like a really different experience than many of the other treatments. And some trial and error to find what worked for you and adjust to the treatments. I’m curious what they mean by not being able to tell if it worked. Did your results not improve after the three times, and they stopped trying it? Doug has talked about being more open to new treatments now that his prostate cancer has become castrate resistant, perhaps it will be relevant to you too: https://prostatecancer.net/living/participating-clinical-trial/. – Nina, ProstateCancer.net Team

  • ninaw moderator
    1 month ago

    We’re looking forward to hearing folks’ responses about how they reacted to immunotherapy and whether it was effective for them. As a relatively new therapy, and one only used for more advanced stages, it can be hard to hear from others. This article talks about the basics of immunotherapy and some possible side effects: https://prostatecancer.net/treatment/bgc-reviews-how-well-works-side-effects/. – Nina, ProstateCancer.net Team

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