Introduction:
After a continuously rising psa and corresponding tumor growth, my MO took me off Nubequa and offered me this BiTe trial. I’ve never seen him so jazzed about the prospect of a study before and signed with very little hesitation. I was aware that this was an immuno therapy and typically what that meant for side effects. I completed the Provenge treatment 6mo back and remember the rigors it caused me, but it was well within my tolerance.
Time required:
CLEAR your calendar for atleast 5 weeks.
This is an all in study and Not built on convenience.
many many, many hours/days/weeks of commitment.
Pre-testing:
This study required about 2 weeks of safety tests, imaging, echo/muga, ecg’s, urine, blood, pet scan. Cycle 1 infusion p1,p2&p3 involves a bunch of pre-meds to help lessen any dose reactions. I.E. Tocilizumab.
My experience:
Day1, cycle 1, part 1. PSA 348
I had what they called a “robust” immune response.
24 hours after treatment I landed in the ICU with grade 3 Cytokine syndrome. My bp bottomed out, my liver and kidneys stopped receiving adequate oxygen. It was a real scare that at the moment I wasn’t sure I was coming back from. Luckily, the team got me stabilized and instead of the planned 48hours inpatient monitoring, I didn’t get discharged until 2 days later. Once home, I suffered horribly from what I’d call severe joint pain. I was essentially disabled from limb to limb without the use of heavy pain killers. NSAIDs and acetaminophen were mostly taken off the table because of organ concerns and opioids (even at 25mg Oxy) had little to no effect. At this juncture, I wasn’t sure I’d be returning in two days to do it all over again.
Day 5, cycle 1, part1 PSA 232
PSA result came in that showed a 116 pt drop in 5 days. 😳what!!!!!
Day 9, cycle 1, part 2. PSA 145
Return day. I’ve just started to feel like a human again. Walking on my own, showering, using the bathroom without struggle. Mentally, I’m still trying to digest the torture I put myself through and if it was worth it. I asked my 13yo son straight up…”do you think I should continue?” He said, “well it’s killing your cancer right?” I said, “ it’s looking that way. “ he said, well then yes, ofcourse.”
It was that black and white to him and in turn made it a simple choice for me. “I have to stay the course.” Although It couldn’t quit helped me cross the clinic threshold for a second time without a surprising emotional response. I broke down in the lab chair and cried like a baby. It was like a PTSD trigger engaged when the first catheter needle went into my arm. All I thought was, I must be out of my mind to be doing this again
Day 10, cycle 1, part 2: PSA 115
Thankfully, I didn’t land me in ICU this time, but it did check every side effect listed on the white paper. Vomiting, diarrhea and presumed TLS being the worst. I again ended up staying two extra days inpatient.
Day 15, cycle 1, part 3: PSA 59.4
Infusion 3 : max dose. Vomiting, diarrhea, TLS, rash, dry mouth. Pain pain pain. But..,, I did get discharged after 48 hours and this is the first time I’ve been able to be home and recover for more than 2 days.
Day 20: (cycle 1, p3 PSA 36
Swelling and edema starting to dissipate. Pain still hitting 8/9 in joints. Basic motor functions difficult but starting to become more self sufficient. Still on high dose pain management (800mg Motrin, 500tylenol, 100mg tramadol every 6-8hrs) Cuts pain to a tolerable 5. Introduced diuretic 1 to 2 times a day if bp over 100/70
Introduce stool softener to mitigate constipation due to pain management.
Taste still escapes me, but the feeling of razors on my tongue is starting to dissipate.
I return on Monday for the start of cycle 2. I’m hoping, praying that my body has acclimated to the point where it’s just a struggle not a crisis. I’ll return to post psa in a couple days.
This is by far the most difficult thing I’ve ever endured in my life and if I’m being honest, I would have almost certainly declined this study if I knew what I was going to go through.
With that said, my MO’s expect some of the most impressive results because of my response. No pain no gain in its rawest form. Now that I think I might be through the worst of it, I’m feeling pretty damn optimistic on what this will ultimately mean for me.
Either way, I’m fortunate again to be able to push the needle for us. If not me, then maybe my sacrifice saves someone down the road.
Revisiting Intermittent Therapy in Metastatic Prostate Cancer
PSA dropping but pain
BAT trial
Trial or not
