Actually, below is an update I sent close family members. Note that some items are oversimplified, but they are not knowledgeable HW members. But I also know folks on HW have been asking how I'm doing. Well, I think very well on the PC front, but not real well otherwise due to a major spinal chord injury (fell on concrete in early March, 2017).
I am in a wheelchair these days; but I can walk at times, but not well. Anyway...:
As you know, we are back from spending 3 days in beautiful AA.
On Monday, we met with the physical medicine doctor. She was very nice
and very knowledgeable, two qualities that our local doctor lacked.
But while her style was better, it is clear that there is no magic
bullet. My spinal situation has been worsening, leading to a larger
constellation of symptoms. We are going to increase my anti-spasm drugs
and also try an additional drug for related issues. She also suggested
some specific P/T modalities and that will start next year (insurance
can restart the clock if I do that). She also had me do assorted blood
tests and an x-ray on the oft-chance that there could be other causes
for issues. I already saw the blood test results, as they are posted on
the Umich portal. Those results are all perfectly normal, as expected.
I'm sure the x-ray was fine too, since she didn't call me (she said she
would if anything was amiss). Also, after visit summaries are posted on
the portal. Very nice as it allows the patient to read the doctor's
comments/suggestions on-line. They also have that here, but they
never post that information. Incidentally, at Umich you can also email
any doctor you've seen there, via the portal. Very impressive.
On Wednesday (today), I saw the RO, Dr. Spratt He and I were 100% on the
same page. My PSA has been skyrocketing, indicating my PC is back and
very aggressive. The best scan in the world is the Ga68-PSMA Pet/CT
scan. Luckily for me, it is in Clinical Trials at Umich (it is the new
standard of care in Europe). Bulletin: I read there is even a better one
coming out...but I digress. The old best one that I had at Mayo in late
2016 is now in about
5th place! Things are really changing in nuclear
medicine! Anyway, I had the scan on the 17th and the results could not
have been any better. They found it in 2 spots, thus explaining the PSA
rise, and both easy targets for SBRT. This is a newer radiation, like
cyberknife. It was recently developed for oligometastatic PC (ie: PC
that has spread but in less than 5 spots, hopefully in pelvic or
abdominal lymph nodes). That's my situation. It is not in bones or
organs. Dr. King, in Santa Monica, pioneered this. He treated me in
early 2017. That knocked my PSA down to undetectable ...until recently.
The idea is to keep doing this (whack-a-mole). They are trying to turn
my PC into a chronic disease via this modality. So, I will be getting
back on the difficult meds., but only for 3 months instead of the usual
1 year. Meanwhile, we will do the simulation on 12/4. about
thereafter, we will do the 5 SBRT treatments (every other day). I am
thrilled that my thoughts going in were exactly his!
If you have more questions, ask me.
Post Edited (compiler) : 11/2/2018 1:17:32 PM (GMT-6)