Keytruda was a lifesaver for me. I would have died theee years ago without it. But now I’m getting a slow but steady PSA increase (currently only 0.95). But I’ve been here before, many times, watching it grow from super low to massive numbers. I did a PSMA scan and pretty much pinpointed the location but the docs won’t operate or do radiation to kill it, recommending instead to watch it grow until I hit ~ 10, then pivot to Lutetium.
I know the deal by now, it’s all ‘palliative’ at S4. So operating and radiation are not palliative Rx - But it still seems like the the more aggressive play for the long game. What do you guys think.?
If I have another round of fighting the dragon, … I just don’t know how many more wins I can hope for? Hoping for 9-Lives….
I’m only 52 - almost 7 years at stage 4 now. I’m thankful for that time, but I’m still working FT still supporting my family, kids in high school still. I’ve got 30 years in, but I can’t retire until I’m 57, unless I try for disability retirement- that seems like it is designed as a retracted fight to keep people away (and I’m doing good work and don’t need an accommodation- just don’t want to work until I get too sick to work, then die.) I’d to think I’ll make it to 57 and then can retire and have some time to enjoy before this disease finally gets the upper hand. But it seems like I’ve been too lucky for too long. This next round has me wondering again how I want to be need to spend my time…
One day at a time…
Chugach
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Chugach
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Is there some danger with overlapping radiation fields? Is it in a spot that is risky to radiate? Psma pets are “new” and it seems the SOC guidelines and individual opinions from each RO are in flux.
If you are still in Denver there are other RO’s you can talk to.
If you have to travel maybe some members here can help you find a more aggressive RO.
Whatever they found they likely would not have seen that spot for a while without a psma pet.
Your situation/history seems unique, and you are young. It seems so much of the treatment rules are oriented towards guys 15-20 years older.
thanks - good advice; there was concern expressed about too much radiation. I don’t really understand the risk - but seems like no radiation treatment is a also not a good option. Yeah the whole PC SOC seems designed for older men.
You say the PSMA scan pinpoints the location(s) of the cancer. Where and how many sites and what SUVmax values? If there are 5 or less lesions then you are still oligometastatic and SBRT can be beneficial and is a relatively easy treatment. Furthermore, there is no reason to wait to a PSA of 10 to do Lu-PSMA treatments it appears to work better when the cancer is less advanced, and better in lymph node lesions than in bone.
I would seek out a different RT for 2nd opinion. BAT is another option as it can restore responsiveness to advanced androgen receptor meds. (Per the RESTORE trial, and also see the ex-BAT trial alternating one month of BAT with one month of darolutamide.) Don’t roll-over, Chugach.
Hello - my husband just did 10 daily palliative treatments to the whole lumbar and thoracic region because his spinal cord was compromised. Spend your time with the ones you love - and keep your mind, body and soul active! 💙
It sounds like you have mixed acinar and neuroendocrine. If so, PSA and the PSMA PET scans are not giving you a full picture. An FDG PET scan may show a lot more. If possible, a biopsy (Histology + IHC) may reveal a direction for clinical trials. Here are some clinical trials:
I would consult with Dr. Beltran at the Dana Farber Cancer Center and with Dr. Dorff at City of Hope in Duarte about clinical trials for your situation.
You're a peer hero to me, Chugach. Keep, chugging along (yah, dad joke, maybe used in response to you before?...dunno)! Anyway, here is my experience regarding medical retirement:
In 2021 (then 5 years in at 53) I was working full time in a chief position without accommodation and was intending to "ride it out" (dunno what that means with S4 APCa, but that was my mindset) and, as you say, "work until I get too sick to work, then die." But since 2021 corresponded to my youngest graduating high school, my wife used this as the limit of "supporting my stubbornness" (her words) regarding medical retirement. So, pouting more than little, I started the process.
Like you, I expected a frustrating fight. This didn't materialize. My former employer uses Unum, and I worked through an Unum case manager and it was easy to get approval for medical retirement. In fact, it was so easy that it was a bit of a disappointment. Approval of my disability meant that I'm sick, regardless of whether I can work or not. I mean, I knew it, but some part of me expected (hoped for?) at least a fight from some insurance doctor. But there was nothing.
The whole process took a little over 2 months. My wife was able to transfer her job, so we sold our house in the Denver area and moved to Ohio to be nearer our oldest child and have a higher density of APCa treatment and study options for me.
I will admit that, after 19 months of retirement, I am only now coming to grips with not working. My current life duties are, in order: Family, cancer, and finding meaning in life. Since the first two often kinda do their own thing, that last duty can be a gnawing grind.
I know it was the right choice, because my family now has access to me on their own time, not mine. It's a bit strange, but I've come to realize that having opportunistic mundane interactions with our loved ones is just as important as the "bucket list" experiences.
It doesn't always feel like I'm doing the best thing with my time. I could be working and bringing in more money, and that would make me feel useful. But when someone in my family feels comfortable enough to discuss what's going on in their life without a hint of my cancer lurking in the background, that time is perfection.
I really appreciate you sharing. My wife is also wanting me to wait until our son is out of high school, that’s still 3 years and im 4 yrs, 1mo and 3 d from my MRA of 57 ( not that I’m counting). I think the last couple years of peace from PC has her thinking it’s behind me. I hope she’s right but now or 4 years from now, my heart is not in my work anymore.
I understand completely. It's all about your incredibly on-point comment: "...it seems I've been too lucky for too long." (Man, that hit really close to home...)
Your case (and mine) are implausible. We need to assume our cancer is never behind us, and that the enemy is always at the gates. It's draining at best, maddening at worst.
With my hindsight talking, can I make a suggestion? Even though you are planning to work, definitely speak with HR and see what all the terms mean and what is available when. For example, my employer was able to formally provide short-term disability ("STD"...a bad shared acronym...) so that I could simply take an entire day when I had an appointment (lord, I remember idiot me going back to work the very same day they put me on ADT...why did I do that???).
I should have done it sooner, because it's not just "sick time." I got some extra time to myself and was then in the official world of health disability that helped smooth my transition into full medical retirement.
In your case, however, having STD right now at your disposal may also allow you to participate in studies (of which Colorado has a dearth). - Joe M.
You are still young. You have great reasons to keep doing everything you can to fight that dragon. It seems you are on the right track to keep your PC under control and new trials and treatments are always possible. Your age and stamina will help in this battle. My husband is 76, diabetic, heart condition, kidney disease and now has Parkinsons. He had everything but the Parkinson's when first diagnosed. So age and health are on your side! After 8 years, he is running out of strength to fight this beast. Best of luck!
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Hoping for a cure --Oligometastic disease, third time
Searching oligometastatic options
Hoping for Urologist Recommendations/Referrals in the LA/OC CA area.
Completed 2 rounds of chemo 8 to go. I can do this
