I don’t post much on here. Yesterday I had my third and final Provenge infusion. I did really well with the first two infusions except for a racing heart which subsided. Today I woke up and my joints were all aching, I had a headache and REALLY bad chills which have finally morphed into me being extremely cold. I just took my temperature and is 102.6°. I still have my sense of taste (of course I do, I am a gay man!). Does this sound like a reaction to Provenge? I am waiting to hear back from my cancer center. Thanks.
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MJCA
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Provenge is a dendritic cell therapy where they remove the patient's own dendritic cells and incubate them with PAP/GM-CSF to amp them up. I wouldn't expect the same results without it.
I think most probable you have a mild cytokine release syndrome caused by activation of your immune system when injecting new immune cells . Allergic reaction do not usually cause a 102 fever with chills and nausea.
Normally, every medicine comes with a severe warning if you have an allergic reaction you need to go to the ER immediately. Obviously you are still here and joking. I took sulfa years ago, after never having it with other problems. I had bad hives and rash all over and I drove myself to the ER (without waking up my wife who said she would kill me if I ever did that again). The ER put me into a bed immediately and started a drip with an antihistamine. And then they told me that I had done the right thing. I stayed there for about 3 hours while they kept me under observation and then sent me home. Now all my medical charts say I am allergic to sulfa and to never give it to me. I don't know what they give you at the infusion center. If they didn't give you a warning note they should have. That is SO for any med like that.
When I got my first Lupron shot I was amazed they didn't make me stay in the waiting area for 15-30 min after the injection. If you get a Covid or flu shot at a pharmacy they will tell you to wait also. Some people don't get a bad reaction the first or second or even more times before they get a severe one.
I have a similar issue with sulfa. It makes my skin feel like it is burning. Luckily for me I was in the hospital when I had that reaction. I have not had Covid. In these times I am hospital-averse. Last night my fever jumped up again to 102.5°. Took Tylenol and Zyrtec. I woke up at 3:00 a.m. sheets all damp from my body sweating out the fever. Felt like the old days when Lupron gave me the night sweats!
My brother, I finished my Provenge treatment in October. Most of what you experienced are typical reaction to Provenge; in my case I also had constipation in course of the treatment. However, all the side effects went away shortly after the final infusion. I have been on Xtandi since then. Best to you my brother.
Nurses who did the infusions for my husband said flu-like symptoms happen about 50% of the time after Provenge. My husband had the same symptoms as you and Schwah.
It would be really interesting to know whether there is any correlation (positive or negative) between fever and long term effectiveness of Provenge. Since fever/cytokine release often correlates with a strong immune response, it's possible something good is going on. If someone can talk to the prescribers or the company, it might be possible to look at results retrospectively at one or more locations.
I don't have any connection to the Provenge food chain. If you can talk to whomever prescribed it for you, maybe someone can start to take a look.
As I see it, there may be three or more subsets of Provenge patients: 1. Those who had the full series and did not develop a fever. 2. Those who developed a fever, but supressed fever with aspirin/Tylenol, etc. 3. Those who let the fever run its course. If a hundred or so patients can be found, and followed up a year or more after treatment, if there are differences, they may show in the data.
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