I mentioned back in May that I would consult with a research oncologist at UCSF regarding immunotherapy. I did so and I've since had a repeat PSA and MRI. I'll try to summarize each and describe where that leaves me.
PSA: substantial rise from 5.2 in March to 7.6 last month. When I was diagnosed and had mets in my lungs, I was a 5. Now for most men that's not a big jump or high number. But for a man with my history and severe grade of mutation, it's an alarming jump.
Imaging: In May, lymph nodes in the pelvis were quite enlarged. They no longer are. That's really good news. Not so good is the increase in size of the gland. From a 3.7 x 3.9 x 5.5 cm with a volume of 40 ccs, to 5.4 x 5.4 x 5.3 cm with a volume of 67cc. A glitch in software didn't transmit dimension of the tumor, but I should have by tomorrow. But the measurements all seem on an upward trend. Seminal vesicle involvement is still indicated on the right side. The best news out of this is that so far, because of the directional growth of the tumor, it's not messing with my bodily functions. I really enjoy peeing and my morning "constitutional" is one of the highlights of my day! ;) I'd be really upset if I couldn't do those things.
As mentioned, there still appears to be right side seminal vesicle involvement and the area surrounding it, evidence of further growth.
Symptoms: I began to notice an increase in fatigue in late July. I'd done so well in terms of energy and stamina since the end of last year, I'd almost begun to take it for granted. But it became clear that even with 7-10 hours sound sleep, I still wasn't waking fully rested. I often need to lay down mid day for a bit. I've also noticed an uptick in pain in my arms/legs and body overall. Pain different from the neuropathy. Kind of flashing, low aches in my arms and legs, hips and torso. I also have a dull, nagging ache in right upper, upper part of the scrotum. Not really pain per se, just an annoying, dull discomfort. Oncologist says based on MRIs and anatomy, that makes sense.
I also want to say to anyone that has never had chemo. Try as hard as you can to understand what it does to your loved one's body. Aside from it's shear chemical brutality during the process, the person's body is never the same. And the effect called Chemo Brain means cognitive function mau never be the same. You think it bothers you because I don't recall I told you something yesterday? Imagine how it feels for me who used to remember everything and be able to multitask like crazy.
It hurts.
Next Steps: The Onc would like a chest/abdomen/pelvis CT scan to see if there is any visible evidence of metastasis again. Then, based on that trove of data, we can make a decision as to whether or not it makes sense to to beg Merck for a "compassionate" use of their immunotherapy drug Keytruda.
Having ruled out hormone deprivation and chemo for the future unless needed to control unpleasant or painful symptoms, I have been limited in Western Medicine to try and treat my "incurable" Stage IV, metasticized Gleason 8 (out of 10) mutant PC. I have used extremely toxic chemo, suffered through 8 moths with no testosterone and lots of estrogen.
But immunotherapy and Keytruda caught me eye. In a nutshell (no pun intended....well maybe), this immunotherapy attempts to turn on the immune system to kill cancer cells without making the immune system attack good cells/organs too. It is more effective with the particular gene mutation I mentioned in a previous post, the exact one I have. So we're looking very carefully at this.
There's very little downside; 2/3 of patients seem to tolerate it well. In the 1/3 that don't, side effects are rather easily reversed. Of the 2/3s that can, about 15-20% of men saw the tumor stop growing or actually shrink. That's the good news. And less that 1% die of the treatment.
The bad news is it's off label for PC right now; only approved (and therefore PAID FOR by insurance or Medicare) for lung cancer I believe. So we'd have to plead "Compassionate Use" with Merck and they'd have to decide if I was worth $250,000/year as a case study outside of protocol. Then they'd have to keep doing so. One takes this every 3 weeks via IV.........forever.
So we'll do the CT scan and see what's up and if Dr. Lo and I agree it's time, we'll pursue this.
In the mean time, I continue to use high CBD cannabis in both smokable as well as suppository forms. Several physicians have commented that it may very well have been what kept my disease relatively inactive for so long. I try to eat a healthy diet and keep stress low I sleep A LOT. Pain has seen an uptick but is generally manageable with a recent, slight adjustment to dosages of RXs
I also deeply appreciate my Palliative Care Physician. He replaced pain management, urology to a degree, works in concert with oncology and PCP doc and can also deal with everything from pain to energy (or lack thereof), intestinal issues, has a social worker on staff, knows about California's Compassionate Death Act (and has participated) and is just an all around sweet, devout, funny, compassionate Jewish guy with an impish grin.
So that's where we're at right now. CT prolly next week and decision roughly a week later.
But I'm at a good place whichever way thing go. I love and am loved.
What else can one ask for?
