I had the third and last re-infusion on Monday. My port is being removed today. I'm part of a clinical trial, and if I'm in the arm that gets a 4th dose (the other arm gets no additional treatments), that will happen in 20 weeks.
The only side effects worth noting happened after my second re-infusion last week. Late that afternoon, I had really bad chills with just a slight fever. I had to put on two sweatshirts, sweatpants, and heavy socks, and shut the air off and get under heavy covers with two extra blankets. I also took two aspirin. After about 2.5 hours, I woke up and immediately knew the worst was over. I soon broke into a sweat, but slept really well overnight. The next day, I had no energy and stayed mostly in bed until mid-afternoon, by which time I was essentially back to normal.
This week, no problems. No chills or fever, and I walked four miles the next morning (yesterday) around 630.
Good to have it done. Now we wait for a while.
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dhccpa
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Fever is often correlated with an immune response. It makes sense to inform the trial doctors about the fever. Looking at fever/no-fever may be useful in analyzing the data.
Yes, I did inform them of everything. It was well within the expected possible side effects, as sometimes/often happens with a COVID vaccine or a Shingles vaccine.
I am sometimes getting fever at about 7pm to midnight after Degarelix injections. Usually getting the injections at 8.20 am. I partially believe that is why Degarelix injections maybe useful but I don't really know.
where did you have this treatment? Was the trial about the dosage? What is the variable that would get you another dose? Good luck, we are all watching for results!!!
I found a local urology clinic that used it. That went against the grain of my thinking, but it was the decision I needed to make.
The trial is solely about getting a 4th dose 20 weeks from now and assessing the effects vs not having. My understanding is that the two arms are randomly selected. I don't yet know which arm I'll be in yet.
As for me being in the trial, I was asked well before treatment began if I would (same clinic). I do not know if anything in my past health history led to me being asked--I didn't think so.
I believe it is nationwide in participating clinics (maybe any clinic that administers Provenge).
To clarify, I was going to do the normal course of treatment already. Only the costs of the 4th dose, and the monitoring of my health related to the trial, before and after, are paid for by the trial sponsors. My three treatments and before-and-after visits to doctor are being covered by Medicare. The two sets of costs are kept separate and, for instance, the trial monitors certain blood tests that are not normally monitored (I've never seen a breakdown).
Thanks for your update! My husband completed his 3 courses back in early June. He goes in for a psma scan on Oct.2. His PSA #s have been rising and the only lasting side affect post treatment have been similar to arthritis ( joint stiffness esp. in the morning). His onc said that this is due to autoimmune system a bit in overdrive.
Don't delay too much the consultation and second opinions with RO s. I have a feeling that Dana Farber radiation oncologist will advise you the best but I don't know for sure.
Could you use the parametric MRI in order to determine the pirads score in your prostate and to correlate the MRI findings with the psma pet scan cancer location? I don't believe that it is urgent but you should urgently contact a radiation oncologist in a cancer centre of excellence.
Check your eosinophil levels (part of CBC blood test)- there is a correlation between elevated level and good response to Provenge (google provenge and eosinophils - there is published paper, but I don't remember the link). Provenge worked quite well for me, over 6 years remission.
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Provenge
Provenge.....no side effects? How is that possible?
Finished Provenge
New treatment
