Thoughts on Provenge

[dhccpa]

I had Provenge back in September (2024), and I've detailed that in earlier posts.

On March 17, 2025, I was to get a 4th dose as part of a clinical trial. The goal of the trial is to evaluate the extra dose-very simple.

I was a little more than halfway through the procedure when I had a mysterious bad reaction: sharp pain in my head followed by bad pain from the top of my kidneys to the bottom of my heart, that whole midsection, and more sharp pain racing up my spine. Then I began to feel surges through my body. Very alarming (I usually tolerate pain well, but this was different). I alerted the nurse, and when it seemed to continue and possibly worsen, I told her we had to do something. The doctor was contacted via phone and the procedure was soon halted. My blood pressure and pulse had jumped very high, but not my temperature. I had a feeling that if I was able to stand, things might improve, and sure enough, it worked that way. I was able to walk to my car and ride home with no issues. But I had bad chills for a few hours, then broke into a sweat as if breaking a fever. The next day, low energy, followed by next two days of minor fading side effects, such as mild cough, mild chest congestion, and a runny nose.

That ends my Provenge experiment for now. I'm glad I did both the regular treatment last year, and I really wanted the 4th dose, but with the bad reaction I was glad to get half of it. As usual with Provenge, no results to report. Hopefully it will do me more than minor good going forward.

I have puzzled over the events of the 4th dose, but have come to no firm conclusion. I had radiation to the prostate and pelvis (40 doses in all) between having the normal 3 doses of Provenge back in September and the 4th dose on March 17. Lymphocytes crashed during and after radiation, and white and red blood cells had also dropped significantly. Hard to say, but definitely similar to getting, say a bad reaction to the Shingles or COVID vaccines (not that I've ever had such an extreme reaction to either).

I have some other thoughts about Provenge usage in general, but I'll put them in a separate post.

[MarylandGuy]

I had three doses of Provenge. Each dose I would be fine for 20 minutes then get severe chills, shaking, lightheadedness, body pains. The procedure was stopped and medications to address the symptoms were administered. When they restart, I complete with no issues.

The first time I was premedicated but maybe only with 1 drug. The second time they used multiple drugs. Same reaction. Even maybe worse on the second round. But I wanted to go on, and they did. Not sure if I would try another round or not.

[dhccpa in reply to MarylandGuy]

I didn't get chills until later at home. Mainly pain as described plus the surging nature. Nothing like it during the three doses last fall.

Could it have been remedied with a different crew? Possibly, but not sure at all.

Last fall I had chills at home after the second of the three regular doses. Much like what happened here, but with none of the pain or painful surges that happened with the additional dose last week

[Tall_Allen]

Did they give you an antihistamine?

[dhccpa in reply to Tall_Allen]

If it can be administered intravenously, it's possible they did that as well. The actual Provenge infusion began about thirty minutes after infusion began. However, no one mentioned that

[dhccpa]

Yes, famotidine, although their instructions are to take it the night before. 40 mg. This was the same as during regular Provenge treatment last fall.

[Tall_Allen in reply to dhccpa]

Maybe a vagal nerve reaction?

[dhccpa in reply to Tall_Allen]

I honestly don't know. Very surprising given last fall's relatively smooth process. But also very alarming (I normally tough things out pretty well), so given that no one in the room seemed to know what was causing it, and it was worsening, not improving, I was glad the decision was made to stop it. But I wish it hadn't happened; I had a lot of time invested in that final dose.

[dhccpa in reply to Tall_Allen]

Let me take another stab. The phrase "vagal nerve reaction" brought back the phrase "vasovagal reaction."

Back in 2008, I was doing some detailed day-in, day-out research at the National Archives. I had an episode while sitting one day (something I had done many times for much longer). I felt weird, and when I stood up to return a cart of materials to the counter, a dark veil passed over my eyes and I fainted dead away. I was rushed to a stroke hospital, where I spent 24 hours getting my first-ever MRI, CT scan, etc. Blood pressure, glucose, heart rate, etc., were monitored over that 24 hours. Nothing developed, but the doctor told me "these vasovagal reactions" happen with no warning and no cause determined. We discussed sitting, need for a bowel movement, and other things, butu he said it could be a combination of many factors. This Provenge episode reminded me a lot of that episode, except I did not have the intense pain that I did this time. Nor, in the 2008 episode, did I have chills or virus-like after-effects. So some major differences. But I did recall that earlier episode while trying to analyze what happened.

[Tall_Allen in reply to dhccpa]

Maybe mention it to your doctor.

[dhccpa in reply to Tall_Allen]

Yes. I've already gone into this with the nurses who are part of the clinical trial process.

[NecessarilySo]

From the Provenge site:

PROVENGE infusion can cause serious reactions. Tell your doctor right away if you:

Have signs of a heart attack or lung problems, such as trouble breathing, chest pains, racing or irregular heartbeats, high or low blood pressure, dizziness, fainting, nausea, or vomiting

Have signs of a stroke, such as numbness or weakness on one side of the body, decreased vision in one eye, or difficulty speaking

Develop symptoms of thrombosis which may include: pain and/or swelling of an arm or leg with warmth over the affected area, discoloration of an arm or leg, shortness of breath, chest pain that worsens or deep breathing

Have signs of infection such as a fever over 100°F, redness or pain at the infusion or collection sites

Tell your doctor about any side effect(s) that concerns you or does not go away. For more information, talk with your doctor.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit fda.gov/medwatch or call 1-800-FDA-1088.

[dhccpa in reply to NecessarilySo]

Good response thanks

[Lavender22]

Thanks for posting the details of your experience with 4 sessions of Provenge.

My husband had 3 sessions early summer last year. He experienced a drop in bp during the initial transfusion ( where they filter out part of the blood to be used for the immunotherapy and return the rest) and then as you also indicated, he too experienced severe chills when they were pumping the new infusion (Provenge) into him . This infusion was given a few days late at the Monter Center in Nassau co., NY. The treatment was new to the facility, but they were ready to quickly warm him up during the next 2 sessions. He had just the 3 sessions and then a few months when his PSA #s began to really jump and a scan showed increased activity he then went onto Xtandi ( which proved to fail after trying it for about 3-4 months of treatment).

I am curious, what follow-up did your onc request after the medical events you experienced? What was his/her explanation? Did they do blood work to indicate enzymes that would indicate a heart attach or similar? It sounds like it was pretty extraordinary and they would want to further evaluate?

Since then, what have you tried ?

My husband learned that he had developed a debilitating tumor in the lower spine and was directed to have 3 sessions of radiation treatment specifically to the area. He is also now doing carbataxol chemo. The two treatments have brought his psma # s down considerably ( they had reached to over 400). And he is doing quite well. Once he completes the chemo I believe he will go to Xofigo- radium 223 .

Thankfully, Scott has reached the 5 year survival mark—and we continue to stay positive. And we’re keeping an eye on the developments at Weil Cornel’s clinical trials on Lu-J591. If anyone has any updates on this, please let us know!

Wishing you the very best—Elisa