So great news, there are no distant mets, but the L side of Prostate lit up along with the perineum. So, maybe radiation? Messaged my previous MO for his opinion, he's the Medical Director at the Todd Cancer in Long Beach, and he agreed about radiation.
Blood work all looks good to go for #16 Cabazitaxel on Friday
But, I'm still Standing!!! 💙
photos.google.com/share/AF1...
Fight on
Randy
GREAT news. Wish you more great news going forward. Just curious, what happened to the two one cm hot spots in pelvic lymph nodes ? Did they disappear because of the treatments?
"No regional or retroperitoneal tracer avid lymph nodes are seen, the previously noted right internal iliac Axumin avid lymph node is not currently seen."
So, all these dang chemos did resolve something 😂
Mahalo, and Yes hope that there will be great news with a scan post radiation
Fight On
Yea or YEAH! that is good news. Its weird as if your at such a low level of spread its like initial diagnosis (locally aggressive prostate cancer) and now after all your treatment you are a candidate for treatment seen early for that--prostate and bed radiation. The clock has gone back the tide has turned.
Its all really good!
Heck yea💙
Keep standing strong! 🤙🏽💪
How many distant metastases have you had?
Just mets in the L ureter lymph node chain, that got resolved with the early chemos. Then later there were 2 iliac lymph nodes, and that also has been resolved. Nothing too far from the prostate 😀
And you never received whole pelvic radiation? Why not?
No, my 1st MO sent me for a radiation oncologist consult in 01/2016. I declined at the time, as I thought that since the PSA went from 840.2 down to 0.7 in 2015 that the PCa was responding well to the ADT and the 15 Taxotere sessions that it had did the trick. Subsequent MO's never brought up radiation, was just given more chemo. In 2020 another 6 Taxoteres after Abiraterone then Xtandi failed in 2019. And now Cabazitaxel from 11/2021 to now after PSA kept creeping up.
My 1st MO, Dr. Vora said "amazing" when I emailed him the above "Impressions" as he was surprised that there were no distant mets.
Just emailed Dr. Mariscal head of AIS and an RO, and he said that he's been pushing radiation for awhile. I met him at a ZERO Bakersfield 5k, where he spoke and we became acquainted. I'm going to sch a an cons appointment with him, when I'm down in Bakersfield on Friday
Mahalo
Randy
great news! Keep on winning!
wow Randy , how good is that news !!! Time to celebrate , you must feel elated… good for you brother. Good for you.
❤️❤️❤️
Congratulations. Live long and prosper!
Awesome Doc! Love it! Your positive attitude & fighting spirit is inspiring! Keep on keeping on!!
Fantastic news! Time to 💃🕺🥳🎉!
Exciting news Randy!!! Big congratulations. Looks like you get to continue to embrace and dance with life
Great news Randy! Hit that mother-ship with radiation and go for a cure! Brachy or SBRT. I think your running has helped contain the beast by keeping tissues surrounding the tumor oxygenated. It's when a tumor is hypoxic that it metastasizes from what I've read. Cheers-- Tim
Good advice.
I was thinking about the the same. Maybe he could finally be cured.
I am sometimes wonder why so many people with low volume cancer are not more aggressive to try to get cured? Maybe I should start a post with this question.
💪💪really pleased for you 😀
How was the side effects of the treatnents, i am on my 3rd one today, 16 is amazing, i was told i can take this for months and years as long as it knocks down the PSA. Side effects have been minimal for a couple of days, did notice i got more hot flashes after the treatment, how did it affect the PSA ovet the 16 treatnents ? You must have been on it for two years so far, am i correct ?
Hi, have had Cabazitaxel since 11/2021.
Minimized the side effects by fasting two days prior to each. Did that for the 15 Taxoteres in 2015, and also the 6 in 2020
Randy you may have more Chemo experience than anyone here on HU. That makes you an N=1, on the longer term effects both pos and neg on PCa, Bone, Health, Stamina, etc. One thing is certain….a good attitude like yours, will make a Warriors journey more rewarding, and extended. Press on Regardless !
Mike
So does it mean you can have Lu277 to zap the mothership. I have not read Lu177 being used instead of salvage radiation, brachytherapy etc
where are the best places to have RT done favoring sbrt, HDR, or brachytherapy around NYS. All I found was Fox Chase in Penn
HDR brachytherapy at UCLA with Dr. Chang is one of the leading, if not the leading Dr.’s for procedure and results. I had it done there earlier this year with great results so far.
Concur, had HDR-BT with Dr Chang in June 2019. He's one of the best out there.
Happy, happy...
HuzHuzzHuzzaHuzzah.
What great news Randy, we live in amazing times!
Keep Smiling and Running🌹
I believe your running has oxygenated so much of your body and your disturbance, (that is what I call cancer) that it is dying.
Cancer chokes on oxygen. I also like the way you fast. and the anti-cancer foods you eat.
You are a great testimony to all of us...............🌹🌹🌹🌹🌹🌹
TTY soon
Mahalo nui loa (Thank you very much)
My 1st MO and I surmised that my marathon fitness level made all the very fine capillaries in my digits very wide open and oxygenated, thus never had any neuropathy.
I found research by Valter Longo USC School of Gerontology with fasting in 2015, Started IF(Intermittent Fasting) 16 hr per day. Last meal before 9pm, then break fast at 1pm the next day.
I sip homemade veggie, curry, garlic, ginger for the fasting period.
Also did two day fasts prior to all of the chemos. I had #16 Cabazitaxel at 2pm today and a Lupron shot. Last meal was Weds lunch.
FYI
cancercenter.com/community/...
acsjournals.onlinelibrary.w....
healthline.com/health/fasti...
verywellhealth.com/intermit...
pubmed.ncbi.nlm.nih.gov/343...
In case you're interested. My dental office is in Tehachapi
tehachapinews.com/lifestyle...
Fight On
My best to y'all on your PCa journey. Live Long and prosper
Randy
Thank You Randy.
I think you do so many great things for this situation.
The garlic you sip, along with onions, are a huge cancer fighter. Cancer hates both of those foods. We eat huge salads every day and put lots of onions and garlic in them
We live in 'Florida and are still cleaning from Ian but that is something that takes our minds off the disturbance. 🌹
Mahalo, and Yes to the Allium group with onions and garlic. I also add cauliflower from the Cruciferous family. Dried Shiitake mushrooms too
Using adjunctive therapy to hopefully help with the PCa
I hope that Ian didn't impact y'all too much
Hugs From CA
Randy
I see you are so intelligent about Knowing what foods to eat...........awesome🥦
We have damage from Ian, but it can be managed. we have our house and lives so that is important. I believe so firmly about using adjunct therapies.
I'm pretty sure someday, even physicians, who are taught to use drugs as the only way to treat diseases, will learn about foods and their benefits.
My husband, with stage 4 Pc, has been working on our roof, screens, pool etc. to get our home back to some sort of normalcy. I think, although it is very stressful and costly, it is affording him some sort of relief.
Enjoy each day as i know you do...............🌹🦋
After the PCa diagnosis in 2015, I looked up dietary modifications to assist in beating this accursed disease. So, the IF came up, and also that a heart healthy diet was a prostate healthy diet
baystatebanner.com/2021/02/...
So, I do a low fat plant based, whole grain diet with lean protein and a wide variety of colors of fruits/veggies.
So glad that your damage can be managed.
And Yes, having tasks to do distracts you from the PCa as do my lil adventures that I undertake as a QoL enhancement
Fight on and Care dang Diem
Do you sip your homemade veggie during fasting periods, between 9pm and 1pm? Just a broth right? I think I may start this now and see how it goes.
Randy do you fast 7 days a week?
Hi, yes, it's easier to remember than a 5:2 Fast
livescience.com/what-is-the...
So, I stop eating at 9pm and then Break Fast at 1pm after my lunch workout. Which involves squats, crunches, planks (reg and side), Mtn climbers, and legs lifts.
Fight On Brother
Thanks Randy I started Monday and am doing 12pm - 8pm so I get some food before my afternoon ride. I'll stick with 7 days for now but may have to cheat once in awhile.
Awesome, dunno if it's really helping much as an adjunctive therapy, but maybe that's why I'm still standing after 7 1/2 yrs.
"Don't you know that I'm still standing better than I ever did?
Looking like a true survivor, feeling like a little kid" Elton 
medicalnewstoday.com/articl...
Fight on Brother
Randy
I hear you. Its a big picture for me and this is but a brush stroke.
D*mn Straight Brother, a Kaiser MO said to me that she knew that I had to have a "sense of control" when I told her about the IF and other things that I was doing to stay ahead of the #stageivpca. So, dismissive of her :-(. Of Course I wanna try and NOT die. LOL
Fortunately, have moved on from her to an MO at the AIS Cancer Center in Bakersfield, CA
My Best to you Brother
Randy
Great news, Randy. Good for you! Hope it continues.
great new Randy….keep up the fight!
YES it is! Radiation consult on 10/28, and I emailed him about Lu-177 and he said to save that in case of progression.
Prolly will do MRI guided IMRT
pubs.rsna.org/doi/full/10.1...
Mahalo
Fight on
Randy
I also want to add congrats on a great scan that shows salvage radiation is the best way to go. Hope it is curative for you. but I don't 100% trust that there are no residual cancer cells hiding in the pelvic sites even after the chemo. So may I suggest having a serious conversation about also irradiating the pelvic lymph node fields at the same time. If it can be done without undue risk to adjacent organs it may provide margin against later nasty surprises. I had SRT to prostate bed without pelvic LNs some years back and it came back to bite me. Please consider in consultation with your RO. You are well positioned to win this, amigo. Paul
Mahalo nui loa, Thank you very much for that info, I'll ask my RO when I have my consult at the end of the month, I had two R iliac lymph nodes that lit up with an Axumin scan, but wasn't avid with the PSMA. But, I believe that the PCa needs to be around 4mm in size to be detected with the PSMA. So, obviously if that's the case, there could be 1000s of PCa that wasn't detected. :-(.
So, since I'll be getting zapped anyway, let's prophylactically zap the nearby LN's
Fight on
Randy
what is your current therapy?
which therapy will you have before and after your MRI linac radiation and for how long will you be on that therapy? Do you have any plan or advice?
i am planning to start Nubeqa 6 weeks before my MRI Linac radiation and to continue at least 1 year with Nubequa (Darolutamide) after radiation of my prostate and the full pelvic floor.
do you plan to have another scan which would possibly reveal PSMA negative cancer also?
you can't plan to have Lutetium177 PSMA therapy if you don't check for concordance (that the PSMA positive scan overlaps the PSMA negative cancer).
why didn't you already have that scan before your appointment with the RO?
Hi, still on Cabazitaxel and Lupron. I don't know if RO wants another scan, will find out at the initial radiation consult on 10/28.
Just had the PSMA PYL/CT and previous Axumin in 10/2021:
ABDOMEN/PELVIS: Extensive tracer avidity throughout the prostate
gland for example max SUV 87.5 on image 90. Localized extension into
the lateral periprosthetic perineum at the pelvic floor is noted for
example max SUV 55.3 on image 85. This primarily involves the left
side of the gland although at the basal prostate gland probably
crosses the midline. No definite seminal vesicle invasion.
No regional or retroperitoneal tracer avid lymph nodes are seen, the
previously noted right internal iliac Axumin avid lymph node is not
currently seen.
Fight on
Randy
my 68GA PSMA PET/CT results from last week are similar to yours in a way that my prostate gland SUV max is 14. Otherwise I don't have anything PSMA positive outside my prostate.
what is interesting for me from your results is that the SUV max of your prostate is 87.5.
it is interesting because you don't have any PSMA avid lesion outside your prostate.
you really had numerous chemotherapy treatments. Therefore I am just wondering how is it that the PSMA SUV max value of your prostate is so high.
i believe that the higher SUV max value correlates with more aggressive cancer.
what is your opinion why is it so? (Such a high SUV max value?
i am only on ADT alone, had early chemotherapy more than four years ago diagnosed with 15 and more spinal mets.
all my bone mets gone according to the PSMA PET scan and the PSMA positive cancer only remaining in my prostate with the PSMA SUV max value of 14.
are you sure that your scan is correct? Where did you get the scan?
did they recommend to get another non PSMA PET scan in order to check for concordance? (Between PSMA positive and PSMA negative cancer?)
are you concerned that you may still have cancer which is PSMA negative outside your prostate? And do you have intension to check for it?
if you have a cancer outside your prostate than maybe you need an agressive system therapy? What is your PSA now? Would you like to have a guardant360cdx liquid biopsy,?
i am not an oncologist but it is my personal interpretation.
Can SUVmax values of Ga-68-PSMA PET/CT scan predict the clinically significant prostate cancer?:
ncbi.nlm.nih.gov/pmc/articl....
Kern Radiology in Bakersfield, CA did the PSMA, Kaiser Medicare paid for it. My first Mo said it was "amazing" that there were no distant Mets. GL at Dx was mostly 7(4+3) and some GL 8 in all 18 core blind biopsy in 2015.
I'm sure there are PCa cells beyond the prostate, but for now we are gonna treat the Terrorist base Camp.
Current MO wants a biopsy done, I have a phone appt with him on 10/27, the day before the RO cons.
The PCa in prostate has survived 37 chemos and 7 1/2 years of Lupron, Abiraterone, and Xtandi. So, they are really resistant and hard to kill!
I'm so F*cked!! But, gonna Carpe dang Diem as much as I can in the interim 😍
That's great that your bone mets have resolved!!
Fight on Brother
Randy
i also believe that my MO will want to get his hands on my biopsy samples.
What did he say that it would be the purpose of the prostate gland biopsy if you are going to MRI Linac them?
what did they say to you about:
HDR brachytherapy at UCLA with Dr. Chang ?
what do you think about which one is better for you an MRI Linac or a HDR brachytherapy?
i personally believe that the HDR brachytherapy could provide more intense radiation to the prostate.
i didn't reasearch this therefore I am interested in your opinion.
whoud it be possible to do both? Is any advantage in doing bought?
i realized that one member did bought type of brachytherapy. The HDR brachytherapy plus the one with the seeds. Finnish oncologist recommended that to him. What do you think about that combination?
MO wants to see if there are any actionable mutations, but my Color genetic test was negative for all that it tested.
RO said "IMRT w/ IGRT is likely going to be the best option but SBRT could be a consideration (however given the size of the area of disease this is likely not our best first option. We will review all of these options."
I'm still a newb too and still gathering data before we make a decision.
Mahalo
Randy
i am just curious, did you feel out the questionnaire at the RO about your prostate, actually about the urination. I was asked multiple questions, even how many times do I need to go to the toilet during the night etc
they summ up your score. Do you have lot of urinary system symptoms?
are the symptoms getting worse?
i always believed that ones you have a prostate cancer you should have problems with urination.
what do you think what is the best treatment opinion to avoid further problem with urination?
i really don't want to get incontinence etc etc etc
i know that you had problem with your kidneys. So you should be more careful about treatment options.
i am not a doctor just thinking what is the best for me in order to avoid further escalation of my urinary system problems.
In 2015, the urologist asked me about ED and Incontinence. Told her that I had beers with dinner and after and would pee overnight. Never had the feeling of not fully emptying the bladder, or had a small urine stream. ED was never and issue, ask my Lovers
Yea, L kidney is atrophied with parenchymal scarring from the PCa closing the ureter. But Creatinine and GFR are fine.
If PCa of the prostate is causing ED or urinary issues, that should resolve with tumor treatments.
Maybe a TURP? nhsinform.scot/tests-and-tr....
that is why I am asking you this question.
your SUV max is very high. I was just wondering if that SUV max value correlates with the urination problems.
my SUV max value is 14 but I have sometimes the situation that I am not fully emptying my bladder, sometimes morning I have a weak urine stream.
i agree with you that this should resolve with the tumor treatment.
Nope no effect on urine flow, just a nasty *ss aggressive PCa in Prostate and also into the perineum. Such is Life
What Every Man Should Know about Radiation Therapy for Prostate Cancer:
what is your PSA now? What is your PSA doubling time? Is your prostate cancer castrate resistant now?
woud you try Nubeqs? I believe you are eligible for Nubeqa like me. I will ask my MO for Nubeqa.
if your PSA is above 5 or even better 10 would you consider paying for the guardant 360cdx liquid biopsy?
PSA at 5.3, but I missed by a moth a Lupron shot, so will see what the next one is. It took 5 months for the PSA to go from 2.4 to 5.0
My 1st Mo told me about Nubeqa, dunno if that is on the Kaiser Formulary
i can recommend you to do your guardant 360 cdx liquid biopsy now. Invest 5000 dollars.
therapyselect.de/en/guardan...
i don't really want to do a real biopsy of the prostate as I am scared that it could spread the cancer outside from the prostate.
Liquid Biopsy Shows Promise for Guiding Prostate Cancer Treatment
why did you skip the full pelvic radiation?
i believe TA always recommends it?
was not my choice. I had LN recurrence on one side only. I asked for full pelvis RT. It RO said unilateral Lymphatic spread does not cross to other side. He was wrong. So now I strongly emphasize this to others. Include the full pelvis extended field!
thanks
PSMA scan
My PSMA-Pet Results
Results of psma scan at UCLA surgery or radiation? 
Got PSMA SCAN Results-Now What?
PSMA PET CT versus PSMA PET MRI
