So the pain continued after the second visit and as per plan I checked myself into emergency. Excellent service in and out in three hours. During that time they ran my bloodwork and a CT scan. The scan showed I had new mets on my pelvis and mets on my liver, I thought they said one met. So some kind of progression.
The MO had me in today and the results are:
1. at least 10 mets on my liver.
2. they strongly suspect I have progressed to small cell carcinoma of the prostate (SCCP).
3. they have already drawn blood for genomic testing, ctDNA etc.
4. I am scheduled to a have a liver biopsy within the week
5. A plan is in place to start aggressive chemo as soon as the biopsy results are in:
a. 3 week cycle - upto 6 cycles, maybe more if I can handle it.
b. days 1-5 cisplatin + etoposide
c. days 6-21 rest
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So my new prognosis as per my MO
1. three months to live if no chemo
2. six - twelve months to live if chemo - 2 years on the outside.
I am beginning to investigate if I have any other options after chemo including seeking treatments available in the US or other jurisdictions that are not available in Canada.
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This is early days and I am just beginning to process my new reality.
Scheduled tear jerker this evening when I update my wife.
Written by
skiingfiend
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Psa remains almost undetectable and T remains castrate level. So progression under these conditions indicates SCCP. We're doing genomic work and a biopsy to rule out other possibilities (secondary cancer, regular PCa progression) and confirm SCCP.
These posts are tough reads for most. You seem to be in a good frame of mind. I think I would do what you have chosen, aggressive chemo while searching for a clinical trial. For SCCP (NEPC), there seems to be several options that can be explored. I wish you the best skiingfiend.
I never thought I was I going to get a long run. The best I can do is play the cards I'm dealt and look to the future to the best of my abilities. There's no point in wallowing in self pity, regret, or rage - that just diminishes what time I have left and wears down my loved ones.
This cancer we have can be aggressive and reacts different for every individual. You need to hit it hard and fast. If chemo is the only option you have then take it as soon as possible. Can you try Lu-177 next. I am currently doing 10 treatments of docetaxel again and then maybe I can try Lu-177 as well. I hope the treatments work for you. It is crazy when the treatments work for some men and not others. They say this cancer is slow growing but it also can be very quick when it gets away. I wish you luck in your treatments.
I'm not sure what comes next after Chemo, SCCP is almost an unknown disease since there are so few cases per year. There is no SOC since there is no history of clinical trials, its the wild west when it comes to treatment. Hopefully the biopsy provides useful biomarkers that can be used to suggest treatment options.
Unfortunatelly SCCP doesn't generate PSMA, so Lu-177 probably wouldn't work . Lu-177 works by seeking PSMA. On the other hand, the platinum chemo, which skiingfiend has started, should be a good move.
In the US, next step is clinical trials. My dad is currently enrolled in one with Duke. He was on same chemo regimen as you when first diagnosed with small cell.
I am also here in Canada and the SOC treatment options do get limited as your disease progresses. Its like you need to start paying out of pocket for treatments that are still in trial phases that could work for some of us.
Yes. I have started that conversation with my MO. I have a budget for augmented treatments that are not covered by the health plan and I want him to factor that into treatment planning.
I'll be looking into follow on options once the chemo starts which is scheduled for 2 weeks from today. I'll be bookmarking whatever you dig up over the next couple of months in this disease space.
Mostly cardio lately, was swimming 1.75k laps 3x week.
Gonna switch to weight lifting and walking while on chemo.
Eat a regular diet, mix of everything. Am currently 155lbs at 5"9' down from normal 165. All my bloodwork looks normal and PCP says if he didn't know I had PCa he would say I was as healthy as a horse.
I've always lived an active lifestyle and never made any adjustments due to PCa.
Three to twelve months doesn't leave a lot of time to work thru issues. I need that time to do so many things, including trying to plot out follow on steps after chemo.
Hi there. My husband now has liver mets. They are Neuroendocrine. He was first diagnosed with prostate cancer in 2018 and underwent a radical prostectomy in June 2019. He has bone mets since 2021 and last May 2023 was diagnosed with liver mets. He did 6 cycles of carboplatin/etoposide. He responded really well to chemo and when completed his liver scans were clear. It is now 19 weeks on and his liver scans are still clear. His MO is very surprised at his response and we are all delighted. It may return to his liver but for now things are good. So far his bone mets remain stable
I can only comment re Cisplatin. I was given 5 sessions of this 1/wk (in parallel to RT) 10 years ago to treat throat cancer. It did the job and I found it tolerable at age 67. Stay positive and good luck.
Like you I was in bad shape at the time, with visibly swollen lymph nodes, so they threw everything at it. The SEs from the RT were awful and continued for 3 months. From the chemo I got neuropathy equally in both feet (did not know about cold socks); and my taste was altered (couldn’t handle anything acidic, esp wine) but that eventually went away. So when I say tolerable, I guess it’s a relative statement.. back then I was happy to survive.
I'm in the process of reviewing past posts on Chemo and plan on building my Chemo survival kit. I will post early next week what I've come up with.
I've already started making changes at home. My wife never wanted a TV and sound system in the bedroom but I've convinced her now that it makes sense, if I'm gonna be tired and rundown I should at least be comfortable and entertained.
Got to be careful playing the sympathy card though and make sure I don't overdo it.
It seems the primary observable benefit in PCa patients is "a reduction in fatigue, weakness, and gastrointestinal side effects while fasting". There is no antitumor effect.
I have 5 days of chemo in a row. I don't see how I am gonna fast for 7-8 days in row every 3 weeks.
Thanks for that. Further on it refers to preventing DNA damage to healthy cells. But regardless this is clearly not for you getting it on several consecutive days. Good luck with it.
Good luck and keep up your fantastic attitude. If you get good response to the chemo, might try provenge if that is an option up there. I had it five years or so ago, and thought it provided much bang for the buck, so to speak.
Courage and strength to you. I suggest consulting with Dr. Gary Onik to see if you fit criteria for his novel immunologic treatment. Accessing one metastasis site via needle/probe and applying cryo (freezing) via a fine probe tip to release protein antigens, then injecting a combination of immune enhancing drugs (already FDA approved) into it. Abscopal (generalized immune response) goes after all tumor sites. Heard him present yesterday. Very impressive results (complete responses) in 40% of patients in a variety of cancers including very advanced PCa.
I feel your pain and sense of urgency and I can relate. I've been working against PCa with neuroendocrine differentiation. Depending on who you talk to, some say small cell and some say not yet.
I did six cycles of docetaxel+carboplatin in 2022 to hopefully attack both arms, then did a clinical trial of PT-112 as a first immunotherapy (it worked, sort of, for a short time, I owe an update to my post on that).
I would not be considering Lu-177 unless your biopsy shows that the liver mets are expressing PSMA. NE variants usually express DLL3, and find out if your cancer expresses it. I was hoping to get into this trial:
But what a surprise, my most recent biopsy shows that my cancer does not express DLL3 and it is partly neuroendocrine. I've also heard that they are seeing responses in patients without DLL3 expression. I'd check it out and also make sure that your upcoming chemo doesn't preclude you.
Finally, I see that you've already lost 10 lbs. Your chemo regimen will be hard on your appetite, so go out and have some hot fudge sundaes or something to get some weight back on, or even back off the workouts a bit so you go into it with a weight reserve. Your activity level is admirable, and I'm still skiing a few runs here and there but my chemo did a number on my strength so a few runs today feels like a day of moguls a couple of years ago. But hang in there, fellow skier!
Fellow skier and tele player, my first guitar was a 1980's MIJ Fender Tele, I still have it plus 10 other guitars now.
Thanks for the info, this is really good stuff and I will think deeply on it. I think the chemo train has left the station, they want me on it ASAP or die within months. I really need the results of the biopsy, hopefully that holds some clues.
I feel great for someone that's supposed to drop dead within months, I'm gonna swim 1-2 km laps tomorrow morning and just booked a golf game game for next week.
You're doing great, keep it up! And you do need to do the chemo ASAP as you need to do something NOW and not shop around for clinical trials. Those are next. And you must be thinking "Telecaster?" Haven't thought of that one. I don't play guitar. I Telemark ski.
Lol. I ski downhill exclusively and play guitar and wouldn't think telemark in a 1,000 years. But if i looked at your profile avatar I should have figured it out, smh.
Your attitude and commitment to make the most out of both the treatments still available and the time you have is really admirable. We should all be as grateful. Thank you.
Such a renaissance man you are! I cannot golf well, and I ski worse. Fortunately I am a pro guitar player, so there’s that. Really pulling for you.
I am very amatuer guitar player but was planning on getting better in retirement. How pro is pro: night club circuit, sideman, studio muscian, or maybe a brand name act?
I too cannot golf well but I enjoy it.
I think I've skied my last run already, I was hoping to get some days this year but the winter has been really mild and the local ski hills haven't been able to open in any meaningful fashion. So I'm a skiingfiend in name only now.
Not brand name, a few of my friends are. I was a multi purpose hired gun type with a versatile singing voice, small success and a lot of teaching in several styles. Nowadays I’m in an oldies rock a R & B band, a fine serious hobby where I don’t have to travel to play anymore.
I’m at the age where I start to wonder what I’ll do when I’m too old to be on stage and no one will want to hear or hire me anymore. Considering your situation (and that of an increasing number of friends and family with similar) I am reminded of both the luxury and absurdity of such musings.
Onward, through the fog! Or something like that. Be as well as you can sir.
You can do what my 93 year old dad does ..he plays in a diner on Sundays. At first it was just him, then one of the kitchen help would come out on breaks and play for a bit. In a few months he would have people show up just to play....he plays most Brazilian music.
Laurindo Almeida, Baden Powell are two of his favorites.
Touché! Perhaps that’s the last stop. I used to play and sing a large repertoire of 1930’s and 40’s Tin Pan Alley songs on the ukulele with some flair, although I say so myself. As with Brazilian music, few can resist it😀
Hey skiing f. Just extending love and best wishes. I have SCCP too, though I was only diagnosed with PCa just before Xmas, and am very much still trying to find my feet.
Very hoping all goes well for you / I’m told the small cell element is highly responsive to chemo. Certainly some folks get amazing results,
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