BACKGROUND: Have metastatic castrate-resistant prostate cancer. All cancer resides in bones. still have prostate, diagnosed seven years ago PSA diagnosed at 1,666, went as low as undetectable, now up to 2,000.
CHEMO: Chemo scheduled to start Friday, 30JUN23.
PLEASE FEEDBACK: Any +/- experience on chemo or alternative treatments.
Frank.
Hello Frank,
You might want to consider Lutetium 177. It is marketed in the USA as Pluvicto. It doesn’t work for everybody but for some it has spectacular results. If it is too expensive or not covered there are several clinical trials you might want to look into. Good luck!
RyderLake1-
Thanks for your response. I'm right with you on Pluvicto, but FDA approval was predicated on having chemo first. I've read very encouraging things about it, and they have used it in Germany, Isreal and Australia for a few years with success.
Frank.
Hello Frank,
If you are well enough to handle an overseas flight then I suggest you strongly consider flying to Germany (or England, or Australia, or India or wherever). My recommendation is to first have a PET/CT scan to see if you are PSMA (prostate specific membrane antigen) positive. If you are, then consider a medical trip. The place I chose four years ago was the Universitats Klinikum des Saarlandes or UKS (Saarland University Medical Center) in Homburg, Germany. The reason? Homburg is a much smaller city than Frankfurt, Berlin, Heidelburg, and others. It is connected by high speed rail to Frankfurt. A small city with a big regional hospital. The lead Doctor is Samer Ezziddin. If interested and for more info try "uks.eu/nuklearmedizin". All the UKS doctors and most of the nurses speak English. It is, however, probably a good idea to load Google Translate onto your phone or laptop. Lots of other overseas options as well. You have a big decision ahead of you! Good luck!
Hi Frank, Welcome to the club no one ants to be in...
You may ant to look closer at Pluvicto - I as told something similar by the VA but as it turns out my Veterans Onc in Palo Alto said 'or refused chemo'.
Hi Frank, first I’d like to say I’m sorry to hear about this development in your cancer. I hope you can get a handle on it soon.
I was pretty much the exact same PSA as you when DXed. I’m currently undetectable on Lupron Xtandi. 55 month , so far. My question is what , if any, I’ll effects of this recurrent level of PSA are you experiencing any bone pain or other obvious physical discomforts ? Are you using any opiate pain management ? Thanks in advance, frank, I appreciate your input.
❤️❤️❤️
Kaliber-
Thank you for your response and support.
Oddly enough, it's been 7 years since my DX and I have had no pain, except in my left hip, which external radiation made short work of. Do have numbness in fingers, toes and lower legs.
Bone mets throughout body, in ALL bones, including spine and skull. Xofigo (RA-223) eliminated the little pain I had. Will continue with chemo, then add Plavicto (Lu-177) when it is available again.
BTW, I am 76 YO.
Thanks again for your response.
Thanks sievert …. Thanks for the nice reply. Seems like most guys do pretty well in general. Little pain , maintain mobility etc. . I guess I’m taking a beating by comparison, but I’m managing anyway …. “ alive is the prize “ is what I want. The rest is just fluff yayahahahaya yayahahahaya
❤️❤️❤️
Be careful Kaliber, we may start calling you 'Fluffy'
that’d be ok , like that product on TV ( I forget what it was.) “ fluffy not stuffy “ … if you saw me , it be more like androgen less “ puffy “ . Yayahahaha yayahahaha.
In a couple of hot sheet hotels in New Orleans the woman have a nickname for you. It's "Putty" and your wife's nickname is "Glazing"......
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 06/26/2023 6:31 PM DST
Hi, Frank! My mCRPC husband is on chemo now. (See bio) Most of his SE’s occur on the first 5 days or so after infusion. (Fatigue, slight nausea, body aches, loss of taste for a few days, etc…) Then he gets better each week, until the next infusion. He’s at the grocery store now, walks daily (even if it’s short walks) and lives his life. So far, he says it’s not too bad. 4th infusion scheduled for Thurs. I remember being terrified about chemo. My hubs, on the other hand, was excited to start chemo to kill those cancer cells (weirdo) His MO told me that MY fear of chemo was worse than his SE’s. lol 
So true! Everyone responds differently, but many men tolerate it fairly well. We just got the approval for his PSMA, so we’ll know if it’s working shortly. Fingers crossed 🤞 But, prior to chemo, he had massive mid-back pain, near his spine. That pain is now gone. Phew! Just make sure you stay hydrated and move your body a little. Otherwise, based on your high PSA, it’s sounds like you’re the perfect candidate for chemo. Go for it. You got this. Wishing you the best.
K-xo-
Thanks for a very reassuring report on chemo.
Will continue with Xofigo (RA-223) during chemo, then add Plavicto (Lu-177) to the mix.
Frank.
my husband starts chemo on Thursday. Your reply here is very encouraging. I, too, am the more terrified one.
Any specific recommendations for managing SEs? Have had some good advice about what to have on hand at the chemo suite but the more input, the better.
Im certainly no pro at SE’s, but the best advice I have is to breath lol. Should he take a long nap one day, he’s most likely not dying, he’s just tired. (Yes, us ladies go there) My hubs likes Claritin (antihistamine) for body aches. In the event he gets nauseous, Zofran and/or Ginger tea. The most important thing he can do is hydrate hydrate hydrate! Keep his blood flowing by going on walks. For me, the worst part at this stage of the game, is the anxiety of the next blood draw (every 3 weeks, ugh) Wishing you two an easy chemo. Good lucK!
I am in similar shape as you. I start chemo tomorrow with an eye on future Pluvicto. Last summer I did Xofigo (Radium 223) with good results and no side effects. That might be a good option if you have to wait for Pluvicto.
That's a big PSA number Frank. I'm sitting at 740 at the moment so I feel better now - sorry.I'm in Sydney, Australia and I've just finished two cycles of Lutetium -177 (Pluvicto) and it didn't work for me. My PSA went up and the scans showed most of my Mets growing slightly. So Lutetium definitely does not work for everyone. I'm not sure where I'm going next but probably back onto Cabazetaxel chemo.
Treating hospital want me to try Actinium next but we're not sure about going there.
Good luck with your treatments.
Paul
If you have access to Actinium225 it could be well worth a "shot" to try a round. Often combined with Lu177. Most experience with this is probably in Germany, but the "recipes" are no secret among theranostics/radioligand docs. Another Paul
Actinium works better than Lu. Watch out for the side effect of trouble with the salivary glands. It will be the future when they figure that one out.
I'm in the San Diego area, and lead the prostate cancer support group here. Our members are getting Pluvicto without prior chemo, and insurance is paying for it. Perhaps your doctor is not up to date on possibilities. My urologist, Dr. Paul Dato, handles everything except chemo, and his number is 858-430-1101. Our support group is ipcsg.org, and you can contact me through that. I'm also more than 7 years metastatic to the bone, and am about to start bipolar androgen therapy. However, my last PSA was "only" 17. In our July meeting, we will be getting an update on TLX591, which I consider to be a much better version of Lutetium 177. The video will be posted on YouTube by about July 22nd. -- Bill
That is great deepsci. Indeedd there is NO reason to think that prior chemo has anything to do with the efficacy of Lu radioligands or others. TLX591 is the new "brand name" for J591. Exact same thing. Much superior ligand for effective Lu177-PSMA delivery. I had it in Perth 13 months ago as detailed in my previous posts. Took me to undetectable for the first time. Scott Tagawa's group at Weil-Cornell is using Ac225-J591 (aka TLX591) in a clinical trial for mCRPC). That would be my next choice if I have recurence. Please post link to your July YouTube. Good luck with the BAT. I am also using that (modified BAT). Paul
hi sci, how do I get info about your pca group, thanks
We are Informed Prostate Cancer Support Group, at ipcsg.org. On YouTube, we are YouTube.com/@prostatecancersupport. On Instagram, we have some posts and videos at Instagram.com/ipcsg3. On the website, you can sign up for our newsletters, where I give a summary of the previous month's talk, and we have articles about new developments. We have hotlines, and love to help.
This clinical trial doesn't require chemo. I'm not sure if the would apply to your situation or not. classic.clinicaltrials.gov/...
My guess is that chemo is your best bet. However, you might try lots of lycopenes along the route, (V8 juice), if you're gamey. I think they get into the bloodstream and help the immune system kill PC cells. CR is tough. 2000 is big.
Don't forget - lycopenes need oil to be absorbed. I am taking olive oil.
Yes, I use potato chips or corn chips. Any oil will do. I fry with soybean oil.
Another idea that crossed my mind was Vitamin D3.
From Bing AI:
"Vitamin D3 is an essential vitamin that your skin produces in response to sunlight exposure. It can also be consumed through a variety of animal and plant-sourced foods. Vitamin D3 is known to support bone health, but it also supports the immune system to protect you from environmental and seasonal threats.
According to Mayo Clinic, 5000 mg of vitamin D3 per day is a high dosage that may cause toxicity in some individuals. Vitamin D toxicity can result from excessive intake of vitamin D supplements, not from diet or sun exposure. The safe upper level of daily vitamin D intake is 4000 IU, according to the Institute of Medicine. It is advisable to have a blood test to determine the vitamin D level before taking such a high dosage
According to Healthline, research shows that vitamin D deficiency may be linked to prostate cancer. Vitamin D is an essential vitamin best known for keeping bones healthy. Human prostate cells contain receptors for 1alpha,25-dihydroxyvitamin D, the active form of vitamin D. Prostate cancer cells respond to vitamin D with increases in differentiation and apoptosis, and decreases in proliferation, invasiveness and metastasis."
I am taking 5000 units Vit D3 per day, no se's. I am also taking Lupron quarterly and Prolia semiannually to control osteoporosis. Recently I backed down to ostopenia, due to the Prolia and Vit D3 intake. I am fighting a rib lesion and spine met T9. I have had PC for 15 years and APC 10 years. I'm 77 now.
For what it’s worth, triplet therapy, with docetaxal Chemo, post Dx has been very effective for me. Latest scan ordered by orthopedic doc regarding some recent hip pain show a “marked decrease” in sclerotic lesions with no evidence of new metastatic disease. This is 18 mos. post chemo, while continuing Zytiga+Prednisone & Eligard for ADT.
Best of luck to you in whatever you choose to do!
hi Frank, idk if this will help but I’ve been having pretty good results w ivermectin solely at 15 mg/ day 4-5 days a week with a loading dose of 40 mg for three days. It also can b used in conjunction w adt especially w castrate resistant pca to make it hormone sensitive again. Here’s the pub med article on repurposing the drug…
Similar to me. I was diagnosed stage 4 8 years ago. Had first line chemo, responded well: all bone mets stable since then. BUT while I continued hormone suppression treatment, I ran out of complimentary meds to keep PSA down (Bicalutamide, Zytiga, Enzalutamide [I even failed on a study drug]).
All my bone mets are still stable, but after I ran out of meds, PSA rose until a new tumor formed in my prostate. At that point, rather than chemo or radiation, I decided to have prostate artery embolization ( procedure to block blood flow to prostate). It's an off label use, as this procedure is only used to soften and shrink enlarged prostate; but it not only shrunk prostate but also starved tumor, PSA dropped to 0. But as I still had no complimentary meds, PSA rose again, and new tumor grew; so I had a couple more embolization procedures. That was six weeks ago. Result: mild decrease in size, minor improvement. If it gets worse, I'll probably have second line chemo soon; unless doctors think another embolization might help.
Hello Frank, good luck with the chemo, please let us know how you do. My dad is also castrate resistant and doesn’t want to do chemo so any success stories with mild symptoms is what I try to find on here. How long/ how many years have you been castrate resistant?
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