Oh man what a terrible 10 days it has been. I wrote a couple weeks ago how my dad didn't seem to be responding to his Docetaxel re-challenge.
"Before his first round of chemo Dec 20- PSA: 182 ALP:518 LDH:357
After his first round of chemo Jan 9- PSA: 281 ALP: 916 LDH:759
After his second round of chemo Jan 30- PSA: 504 ALP:769 LDH: 561
10 days after his 3rd dose he fainted and was hospitalised and diagnoses with A-fib. He was put on a beta-blocker and he has to give himself a blood thinner (injection) each day for 30 days."
After third round of chemo Feb 21- PSA: 670 ALP: 898 LDH: 848"
He had scans done the day before his 4th round of docetaxel and was told to go ahead as his Hb was at 80 and we were meant to discuss next steps 5 days later.
The night after his 4th dose, my dad had gross hematuria. We brought him to ER and his Hb was 50 and his blood pressure was really low. They gave him 3 units of blood but due to the anti-coagulants he had been on for the a-fib and a tumor invading his bladder the bleeding didn't stop. He was transferred to Calgary and they did an emergency TURP to resect the invading bladder tumour and stop the bleeding. He was given a total of 10 units of blood over the last week. He also a second surgery (bilateral nephrostomy tubes) as his kidneys were injured during this process. He is finally stable and his kindey function is normalised now which was key for continuing with any treatment. He was having decreased kidney function since Dec so the kidneys are now working very well. As well as most of the tumor invading his bladder was removed.
During this time in hospital, he had a follow-up with his oncologist. The scans show his cancer has metastasised to his liver (10-15 tumors) and diffusely through his skeleton as well. She said he has a bad cancer and she's worried about how aggressive it is. She didn't say she has no hope but she said she needed to tell my dad his cancer is bad and she's worried. She mentioned sometimes Docetaxel takes a while to kick start but he is resistant to it and she's worried about his bone marrow reserve. She wants the tissue removed from his recent surgery to be analysed to see if he has a neuroendocrine mutation. The plan going forward is to see if he can start cabazitaxel in 3 weeks, if the neuroendocrine variation isn't present. Since we live in Canada we are not able to get lutetitum 177 treatment. She recommended we travel to Burnaby to get a PSMA-PET scan (they are booking into April and seem to be the only place in Canada to get one) and then travel to Germany or the US for lutetium treatment. I feel like we have kind of been left to fend for ourselves now that there isn't much left in Canada.
I asked her about adding carboplatin to his chemo- she said no.
I asked her about provenge or immunotherapy- she said that's not for this stage
I asked her about PARP-inhibitors- she said his genetic testing is negative.
We are all heartbroken as it feels like we are in a very bad situation. I'm trying to hold onto any hope. If anyone has any suggestions or has been in this situation I would love to hear from you!
I also wanted to ask if the biopsy does come back being +'ve for the neuroendocrine variation, what then? Does Lutetium DOTATATE help?
Has anyone used booking health to go to Germany? We like the look of it because it includes insurance for if complications arrive.
Please keep us in our thoughts and prayers. My dad is my world and I want to do anything I can to help him get through this. He has told me every day he wants to fight!
Picture: My dad and I in Africa on Nov 15, 2022. Hard to believe things have got so bad since then. I pray we can have days this like this again. We went there to celebrate his 70th birthday. One asshole doctor told me once, "your dad will likely not make it to 70" when he was diagnosed at age 65, we were all so happy he made it. I hope we can have more time!
I'm sorry to hear about his recent setbacks. Sometimes at this stage, the cancer no longer expresses PSMA, so Pluvicto can do more harm than good. It is doubtful that he has neuroendocrine PCa with PSAs that high. I'm hoping the Jevtana will give him some relief. Maybe email this about adding carboplatin to Jevtana, although his kidney function, liver toxicity, or bloodwork status may preclude it:
Thank you Allen. What’s the ideal time for PSMA expression. What’s the rational with expression stopping?
This is all I know:
You are right, the biopsy came back negative for neuroendocrine differentiation.