My husband was diagnosed in 2011 at age 52, gleason 8, 11 of 12 cores positive. We went for many many 2nd opinions, surgery or radiation? finally chose radiation as all doctors said it had spread already and would need radiation anyway after surgery. Treated with Snuffy Myers in Virginia until his retirement. He was great. Husband on lupron since beginning. One break of 9 months after about 4 years, then psa jumped again. He has been on doxetaxol, 2 times, zytiga, one clinical trial with keytruda, no result other than psa rising. Now on another clinical trial regeneron, now psa 571, scans were stable but now due again next week. On top of this, due to Xegeva, he has developed jaw necrosis. Had one surgery with tooth extraction, now pain again and due for another surgery and more jaw removal. This is nightmare we both feel the ride is about over. Next step pluvicto, if it works. He has mets in clavicle, ribs, back, thank God no pain. Also numerous nodes. I read the comments here but have been silent until now. Anyone have pluvicto with good results? thanks all..judym
Feeling very hopeless at this point. - Advanced Prostate...
Feeling very hopeless at this point.
Myers tell him to take supplements?
yes but didn't do any good
Do u remember which ones?
Why?
R u a physician? I am 10 years out with a Gleason 9 , psa 31 at diagnosis, stage M1 , doubling time 5 months, stage 4. Basically I’ve taken lupron and Xtandi .; On and off on zometa. I took a crapload of supplements however, and my psa has remained undetectable for years. Right now I’m taking 4 mu, zyflamend for prostate, motherwort. I may be wasting my money. I do , however, wonder if they have made a difference. Looking at your articles you seem well informed on the allopathic end. Many patients who went to Dr Snuffy Meyers took supplements. I wonder why some men are having such trouble. I haven’t had it easy either but better than a lot, this is what happens when you step outside science. You don’t know what is helping, or is it a synergistic effect or what. They gave me 3 years, but here I am 10 years later.
Hi, I too believe that herbal supplements are of benefit. My husband is 5.5 years into stage 4 gleason 9 and has remained in good health on the usual prescribed treatments but also a raft of supplements. Mostly recommended by Jim Gordon on Facebook. You make a good point.
No im not a physician, but the poor lady was asking about Pluvicto experience for her husbands who is in dire straits with mets to ribs, clavicle and spine.
So although I believe in supplements it’s not what the caregiver is asking.
You’re right it was a mistake to focus on supplements when her husband essentially was running out of options. There’s a certain point when supplements will not hold back excessively mutated prostate cells.
Where do you get your 4 mu? I was getting it from Mon Coin Sante, but customs intercepted the last two shipments. Thanks.
The anti-aging.store ; have you used it in the past? Did it have an effect? I wouldn’t want you to waste your money.
Thank you. Yes, I have been using cantabiline for many years. Who knows if it helps? I am 11 years from BCR and undetectable, maybe because of the many supplements I take, maybe good luck, maybe something else.
Worked fine, first shipment received, thank you.
Sorry for the nightmare. Stable scans seems positive. I hope someone here can give you some good advice.
DH had a positive result from Pluvicto. PSA drop from 194 to 14.3 as of last lab work two weeks ago. MO was pleased with progress and said we "kicked the can farther down the road". Fatigue is still a problem, but he tolerated the treatments well and is starting to get his energy returning. Scans upcoming in November will tell the rest of the story. Our best to you both. This disease takes a toll on both of you.
Twenty-two years w/PCa & 10 with mCRPC. Been thru all but RP and finished 3 of 6 infusions of Lu-177 (Pluvicto), 5 months ago. MO said pause given success-- PSA dropped 98% and still dropping. Few side effects other than ongoing intestinal distress. Everyone amazed. So go for the treatment and wish you well! Keep us posted on your journey!
10 years with MCRPC??? I’m intrigued! My dad became castrate resistant 1 year ago. I checked out your bio for your treatment history but I didn’t see any, what’s been your journey so far once castrate resistant? What have you tried? I am always looking for members here who have been resistant long term— 10 years is amazing. Would love to know what you’ve done so far. God bless your success
I have different cancer but was researching ip6 gold (capsules or powder) and an Amazon reviewer with prostate cancer used it for ten years at stage four (I looked up his obit - he wrote a glowing review of it)
I’m so sorry for the pain your husband is experiencing. I just completed my fourth Pluvicto treatment at Mayo. After two treatments, the PSMA scans showed that my metastases had either decreased substantially or disappeared — there were still a few traces I could see. It was dramatic. I will have two more treatments, then a follow-up Choline scan in January to see if any non-PSMA cancer has emerged. No one really knows the “durability” of this treatment when it works, but I am grateful for the additional time it is giving me. I wish you and your husband all the best, and hope for some relief from the pain and success with Pluvicto.
I am a candidate for Pluvicto, 10 days ago I began ValAsta doage as recommended by their nurse, I felt more energy day one. Maybe some hope??
Thank you all for your thoughts. Hoping Pluvicto will work. He took some supplements in past, still taking d-3. He is still alive, although depressed, jaw surgery now in next 2 weeks. It has been over 12 years fighting this beast My best to all of you.. judy
Your husband’s history and mine are somewhat similar. I was dx in 2014, Gleason 9, stage 4. I was 55 years old. Mets throughout my skeleton and several nodes. I had radiation to my prostate, and several nodes.
I was also a patient of Snuffy and I’ve had many of the same treatments that your husband had and probably a couple more. I’m currently a patient of Dr. Sartor, he became my PCa specialist after Snuffy. He is excellent, and Snuffy held him in high regard when I asked his opinion of him, to quote Snuffy “you couldn’t be in better hands”. Sartor was at Tulane but now he is at Mayo in MN.
I became castrate resistant about a year and a half ago after several years on being undetectable. I’ve been spot treating with SBRT and the plan is to continue doing that as long as it continues to be effective and is an option based on number of mets and their location. After that I’m planning on using BAT therapy, something that Sartor is very experienced at and he says I am a candidate for. After that I’ll probably give Pluvicto a try, again Sartor is well versed in it and was one of the lead authors of the trial that got it FDA approved. His take on it is that a third of the guys treated get excellent results, a third get some response and a third get no response. It’s not without SE’s so I’m trying to keep that bullet in the holster for now. You may want to consult with Sartor, he’s extremely knowledgeable about all the current forms of treatment and trials, genetics etc. And a really down to earth, brilliant guy. Good luck, keep fighting and don’t ever doubt the power of prayer, God works miracles.
Ed
Wow. Except for the high Gleason score, I've been on the same trek. Starting in 2011 surgery, EBRT, ADT, without and with Zytiga, chemo, SBRT, and finally Pluvicto. I had a great response to Pluvicto! In fact, 5 months after may last dose my PSA has continued to fall.
Best wishes!
Hi Judymin. Don’t know if my experience will be of help as few of us seem to have the exact PCa situation. I’m 75, was diagnosed 10 years ago, Gleason 4+4 8, metastases in my lungs. I had my first Pluvicto infusion just two days ago. Absolutely no I’ll effects whatsoever and I was going to post about it on this site. Might still do so. But based on my experience I have to say I’m thrilled to have gotten it. Too soon to know what it will accomplish for me but I’m looking forward to receiving the next five and I encourage your hubby to get it if he can. God bless!
to AWGAS (Anyone Who Gives A Shit)........ you're right, my wife says "I'm so crude"....
As you all know........ I AM NOT a physician or even an adequate patient..... but I can read and so I posted here recently that, based upon my feeble research of members posts/remarks here on H.U.. that Pluvicto should be renamed Upyourvicto.... Sorry, but it's my research.... (and as a wonderful member who passed our way, he used to end his posts 'But what do I know')
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 10/01/2023 4:44 PM DST
I was two years older than your hubby when I was diagnosed but our stories are very similar with a few exceptions. I was StageIV Gleason 9 when I found out I had prostate cancer. I had a RALRP in October of 2015. I turned refractory in two years and used Radium dichloride to de-bulk my cancer. I've done Lupron, Abiraterone, Docetaxel, and Radiation. I have a somatic gene mutation which took PARP inhibitors and any form of Immunotherapy off the table. I was hoping to take Pluvicto but we discovered my cancer does not express PSMA. Lupron now has no effect on me, so we've discontinued treatment. My PSA is doubling every two months yet I'm at peace with all that has transpired and want to offer you hope. I'm eight years in and still enjoying my granddaughters. I take OxyContin, Oxycodone, Meloxicam, and Gabapentin to take the edge off my pain everyday. I don't know if you've talked to God about all this, but I know that He rewards those who truly seek Him. There is still so much hope! God bless you all during this difficult time!
I’m in the same boat, but diagnosed in 2010.
Just finished Pluvicto. PSA was over 1000 when we started. Pluvicto cut it in half and held it there for 8 months. I also got a 76% reduction in my alk phos.
Thank the Lord for Pluvicto.
God bless, and good luck with whatever you decide. Sheilafx
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