Last time I updated on my husband he had resumed chemo, was going to try one more round before traveling to St Louis for Provenge at Siteman Center, and then I as hopeful to get into the reformulated Checkmate 650, which was stopped due to unacceptable toxicity levels...I definitely get why now! What actually happened: Joe did not get any more chemo, because he was just too sick. They went ahead and started (and have now completed) Provenge. Didn’t do anything to except give him what I believe was false hope. Keep in mind- during all of this time- from 7/8 months ago until now his cancer is spreading through his vertebrae and pelvis - more every scan. His PSA doubling time is 1 month. The chemo did get that down to 1 or 2 something but he’s at 38.8 as of last week. The reformulated trial reopened and Joe had one treatment two weeks ago. He’s getting both drugs- Ipilimumab and Nivolumab. The schedule is 4 treatments three weeks apart, and then Ipilimumab every 4 weeks for up to two years.
One treatment in and two days later was in the hospital for colitis. Discharged after a day. They called it a grade 2 adverse event so he can continue the trial. Great! 5 days later woke up with excruciating flank pain at 2am. First time ever wanted me to call the doctor, first time I thought I might have to call an ambulance. They did a scan and labs and his blood counts are wonky- rbc’s, hemocrit, hemoglobin trending down every time - this scares the hell out of me because of past bone marrow metastasis and history of disseminated intravascular coagulation (DIC) at diagnosis in August 2017. Low calcium. Very low bun:creatinine ratio. CT didn’t show anything (other than more bone cancer) and he was admitted for pain control and discharged little more than a day later but he’s still having constant pain there- though obviously the intensity is much lower. His skin has broken into a horrific rash with pustules- looks awful and itches him like crazy. But they want to give him another treatment next Wednesday! He looks at the trial physician as his additional oncologist...but it sure seems like a conflict of interest to me. He’s doing everything to keep Joe in a trial that I feel strongly will only shorten his life- and he continues to be positive about it when he talks to my husband! Our oncologist here in Dallas told me privately he agreed this trial wasn’t good for Joe...but he won’t tell Joe that bc he won’t crush his hope. I’m so frustrated I could scream. I do think- for a small subset of mcrpc patients with certain bio markers- this could potentially truly be unbelievably helpful...but they need people without those markets to show that- and I think my husband is being used basically as a control. I am so over here this physician, this trial, the traveling for this trial that takes him away from our kiddos- this is him with out second to youngest who is 8. How can anyone justify not being bluntly honest with someone about the likelihood of results when they are leaving their children for it??? There’s my venting. Lost 2 friends to cancer within the last two weeks as well which hasn’t helped. Just in a really shitty cancer place. Hating this disease and wishing oncologists had much, much more training in how to deal with patients emotionally. If you read all this- thank you for hearing my frustration. Hope all of you are in a more positive place- I usually am. Maybe tomorrow!
