with MCRPC. I was on Lupron + Zytiga for almost 4 years. During the last 2 hrs my PSA was undetectable. Then a few months ago my PSA began a steady climb up to about 0.1 when I began Provenge. I had no side effects from the first infusion. However, when I got the 2nd infusion it was a very different experience. During the infusion I began to feel very bad, but I was alone in a room with a closed door. When the symptoms became intolerable, I shouted for help. They came in and said the infusion was completed. I was vomiting, had severe intestinal pain, and diarrhea. I went home & slept for 10 hours. I felt much better when I got up, but my wife noticed that I was having trouble with some words. So I was sent to the nearest hospital. An MRI confirmed that I had a mild stroke. Blood work showed cardiac enzymes that. I also had a mild heart attack. I was not at risk for either a stroke or heart attack. So these were a direct result of Provenge. I’m afraid that the 3rd infusion could have even worse side effects, and so of course I have not done it. I also discovered a paper on the FDA website describing a patient experience very similar to mine: no problem with the first infusion, but a stroke a short time after his second infusion.
To those considering Provenge, I want you to be aware of the possibility of what appears to be a rare side effect. Also, you should insist on continuous monitoring during the approximate 1 hr infusion. I was never informed of even a slight possibility of stroke or severe side effects.
Any thoughts about whether my 2 infusions have had any positive effect?
VPC
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Cvit
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Cvit, I am SO sorry to hear what occurred. I was just approved to begin Provenge. What you wrote is VERY scary. I wish you all the best. What did your MO say?
I hope you'll recover fast! How many vaccins against Covid-19 have you got? Maybe it could be also a later side effect from the vaccin combined with provenge infusion?
Provenge has some serious side effects including turning the entire immune systembupon the patient resulting in the extreme (death). Was this not discussed with you? Did you not sign an acknowledgement prior to the administration of the drug? Also, the closed room scenario... Would you share "where" youre teceiving your therapy? And after you had this reaction, were you not in touch with and consulting with your team? Why would there even be a consideration for your 3rd infusion based upon reaction from your 2nd? Didn't you team provide any advice as to fither risk?
I had my infusion in the infusion room at the hospital along with all the chemo patients, I was continuously checked on, no real SE’s until after the 3rd infusion. I had flu like symptoms similar to a flu or Covid vax, symptoms lasted a couple days.
As we said on many topics we are all different no two the same. I had Provenge in 2018 and had hardly no side effect other than the chills and tired which only lasted a half a day on third infusion. Im very sorry to hear about your experience but anyone considering Provenge should consult with their Doctor and let them know of what happened to you . I wish you the best. Never give up Never surrender. Leo
The Provenge website seems to vaguely warn about this. All this due to a PSA 0.1? Recurrence is considered 0.2 or more, twice. As for benefits, did your PSA go down since?
Provenge rarely makes your PSA go down however when treatment occurs with a PSA of <5.0 trials have shown it has a survival benefit of 14 months. I had treatment soon after my PSA became detectable on an ultra sensitive PSA test so my PSA was less than 0.1 at the time of treatment.
Sorry to hear of your horrible experience. Perhaps there's a better way.
I posted several months ago about being lab rats....I got a lot of negative feedback. The meds that are keeping my metastatic cancer subdued, will also be the meds that ultimately kill me. Obesity, Heart Disease, Insomnia.......all attributed to the hormone therapy, and when I ask about a Vacation from it all, I'm looked at as though I have 3 eyeballs.
VCP (aka Cvit), is Lupron + Zytiga the only treatments you had? Your bio seems rather empty of treatment history. Have you had surgery? Radiation? Something else? It's difficult to know what the 0.1 PSA means without knowing that info.
You said "I was not at risk for either a stroke or heart attack. So these were a direct result of Provenge. "
I believe anyone (especially at 79 years of age) on long-term ADT has some risk of cardio complications. This might be triggered by the stress of the Provenge treatment, but it certainly is a known side effect of the ADT treatments, particularly Lupron (dunno if Zytiga alone has the same risk factors, or if it's even been studied.)
I absolutely agree - a closed room is not right. Was there perhaps a video feed from that room to a nursing station where they were controlling the infusion?
Sorry to hear of the problems you've had, but immediately blaming it on the Provenge might be a tad premature.. there can be complicating factors (which perhaps you also should have been pre-warned about.)
Thanks for your reply. I will try to respond to your email in great detail & hopefully that will answer questions others have had. First, I don’t have a family history of strokes or heart problems. My father lived to age 95 and my mother lived to 100. I was first diagnosed with PC in Nov 2018 at age 76 with Gleason 8 & a PSA of 90. My urologist ordered traditional scans (CAT & bone scans) & these showed no metastases. By this time I had no trust in my urologist, who had not done a PSA test for 3 years (went from 1 to 90) & who said that at my age I should not expect to live much longer.
I went to a urologist at UCLA who measured my PSA again. Based on the sequence of several measurements and suspected doubling time, I predicted my new PSA would be 135. It was 135.5. The urologist said that with a PSA as high as mine, he thought it very likely that it had metastasized & he encouraged me to get a PSMA PET scan. I did & it showed “low burden” metastases, about a dozen lymph nodes and 2 bone mets. The urologist referred me to Dr. Amar Kishan, a young UCLA radiation oncologist. He went beyond SOC and provided several days of radiation to my prostate and two bone metastases. I also began receiving monthly Lupron injections ( which I still get) and daily 1,000 mg of Zytiga & 5 mg of prednisone. Over about the next year my PSA gradually dropped to undetectable and stayed there for about 2 years, until last April when it began a steady climb: 0.02, 0.03, 0.05, 0.09, and recently 0.13.
For the 3.5 years my cancer was under control, I read whatever papers I could find about what do when it became castrate resistant. The Provenge treatment looked promising, especially if I could get it while my PSA was still very low. For those patients who began it when their PSA was below 5, Provenge provided on average an extra 13 months of survival. So I worked on getting it approved by my insurance co (Anthem Blue Cross). They did eventually approve it at a cost of $150,000, but first they insisted that I discontinue prednisone for 30 days. I did so & began treatment. Taking Zytiga without prednisone can cause problems by greatly depleting potassium, which in turn causes fatigue when your potassium drops below the minimum. But I continued to not take prednisone until a week after the second infusion.
I should also mention that I have been on an extreme keto diet from the beginning of my diagnosis. I made that decision based on mouse studies. I know I am not a mouse, but my decision was later supported by a couple of studies, one for breast cancer, and another showing an increase in doubling time for prostate cancer. I offered to conduct a small clinical trial with my MO on the efficacy of keto. (I am a research scientist, though not a biologist). She was open to this at first, but later found that she could not, due to the pandemic. While there is not much scientific evidence to support keto, it has had advantages for me. I lost 30 pounds and I did not experience the cardio side effects often caused by Lupron.
I did have a couple of conversations with the urologist who conducted the two infusions. He apologized for not monitoring me during the infusions & no I was not being watched on video. He told me he would change his protocol with future patients. My doctor’s lack of worry about my wellbeing during infusion comes from his many years of experience with Provenge, never having a case anything like mine. We agreed it would be too risky for me to get the third infusion. I asked if he thought the 2 infusions I received would have any positive effect for me. He offered his opinion that he thought it would, but had no data to support this belief.
So now I am left with decisions about possible new treatments— chemo, enzalutamide, BAT? I have an appointment in about a month with another UCLA doctor who does BAT.
In summary, I had the stroke during the infusion, so I know that the immediate cause was the infusion. I could only speculate on other factors that made me susceptible. Maybe it was the lack of prednisone or potassium. It has even occurred to me that maybe Dendreon screwed up when they treated my blood. I plan to contact Dendreon to see if they have data on incomplete infusions.
My intent in writing these messages is not to discourage others from getting Provenge. My experience appears to be rare. But please make sure that you are continually monitored.
So sorry you had to go through this. I’m not on this site much anymore . My husband is end stage and im his caregiver and work full time from home mostly, so very little time. But your post lost caught my eye. This is unrelated to pc but 28 years ago my mother was diagnosed with amyloidosis. A very rare disease back then and still rare but with more info. Her oncologist said would have less than a year and the only treatment they had was a chemo, I don’t remember the name, but it was given because that’s all they had. Not that it kept people alive or disease at bay, but he felt it was worth trying. After the first treatment she was fine. She went home alone. The next morning I called her and she could barely speak. Rushed back to hospital Columbia Presbyterian. She had a stroke. They hospitalized her and the doctor said some people can have strokes after chemo. Of course they stopped treatment. I’ve never heard of this but it stayed with me. I don’t know if this is helpful, but perhaps research chemo and strokes and pc treatments and strokes. This may be something the doctors are aware of but don’t announce because it is unusual but can happen. And this was almost 30’years ago. Wishing you the best in whatever treatment choices you make. My husband was 48 on diagnose with a psa of 69 and Gleason 9/10. He has fought a long hard battle for 16 years, but although he is fighting, his journey is coming to an end. He has stopped all treatment and is on home Hospice. Prayers for all and all the battles you fight everyday.
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