Need Help NOW: Hello fellow fighters... - Advanced Prostate...

Advanced Prostate Cancer

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Need Help NOW

Fighting4u profile image
28 Replies

Hello fellow fighters! My husband has recently finished 6 rounds of Pluvicto and his PSMA PET scan has shown considerable spread throughout his bones. His PSA continued to rise during the Pluvicto treatment and the RO convinced us that it was probably just debris field from the dying bone lesions. It was not debris field. Oddly enough, no tissue or lymph tumors, just the bone lesions. He has previously undergone proctectomy, radiation, hormone therapy, and 5 rounds of chemo. He has been fighting hard for 5 years and his MO has now given up and told us last week that he had roughly 6 months left to live and to try and find a trial. His overall health is good and he tolerated most treatments as well as could be expected. We were devastated for a few days, but now we are angry and determined. We sure could use any and all help that the community might be able to provide in terms of Drs., Centers and/or treatments/trials. Thanking you all in advance, stay strong!

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Fighting4u profile image
Fighting4u
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28 Replies
MoonRocket profile image
MoonRocket

First, where do you reside?

Fighting4u profile image
Fighting4u in reply toMoonRocket

We are in Florida, but willing to go wherever we need to.

103532 profile image
103532

I hear your desperation and I know there are so many people on here who can give you some ideas. I am still learning for my husband, but wondering if he re-tried ADT with an AR like Xtandi after chemo ? I heard that sometimes cancer can be resensitized to it. Does he have any germline mutations or somatic mutations? Has Keytruda (immune therapy) been offered? That is what comes to my mind. I will pray for you and your husband.

Fighting4u profile image
Fighting4u in reply to103532

Thank you so much for the prayers, they are gratefully accepted. We have an appointment tomorrow at Mayo Jacksonville and your questions are on our list of ones to ask. My husband's MO told us that immunotherapy could only be successful if he had a particular gene mutation which a previous genetic test did not show. However, we are waiting on the results of a new genetic test in case there have been mutations that have occurred since the last test. Blessings to you.....

sandystarfish profile image
sandystarfish

Is this true? Even i read it & have been wondering about it. So many people are violently opposed to these things but i know the Chinese population in malaysia used it as a preventative during covid

street-air profile image
street-air in reply tosandystarfish

That surgeon is a bit of a quack selling a book that says breast cancer is caused by viruses and is a darling of fringe youtube channels that promote a myth that ivermectin for cancer is somehow being blocked by “big pharma” as a cure, when in fact there is not yet any clinical trial showing it is effective with metastatic cancer so one mayaswell recommend a herbal cure.

Maxone73 profile image
Maxone73 in reply tosandystarfish

It can happen that some drug for disease A has got a side effect that would help with disease B, that's the principle of drugs repurposing. Of course, first you need a serious trial confirming it (but IMO you can still take the risk if it does not compromise the SOC ), but it can happen that a drug like ivermectin (which, as my dogs know well, is designed to fight parasites) has influence over prostate cancer communication axis (or some other useful interaction).

For example, aspirin was not born as blood thinner, that is a side effect that can be leveraged to prevent blood clots.

But thinking that ivermectin works because cancer is due to a virus is simply being ignorant (or pushing some agenda, or trying to sell something). Simply because these things have been proved and proved and proved again hundreds of times by big, small, medium pharma, by biology students, by medicine students, by independent researchers...correlation is not (necessarily) causation.

Like that guy who noticed that home burglaries increased at the same rate as ice cream sales, and blamed the ice cream vendors' mafia. Without realizing that ice cream consumption rises in the summer, just as more people go on vacation (leaving their homes empty) in the summer. 😜😜😜

Some trials will provide more definitive insights into the interaction between prostate cancer and ivermectin, as well as the mechanisms behind this interaction.

sandystarfish profile image
sandystarfish in reply toMaxone73

thanks Maxone73 i was really hoping you would weigh in

Fighting4u profile image
Fighting4u in reply toMaxone73

I too, have read many, many reports about Ivermectin and it is so hard to know what is legitimate or not, especially when your back is against the wall. Do you believe what you are reading and throw a Hail Mary pass and take the "whatever" in hopes that something might stick? Or.... do you accept what you are being told by the medical professionals, who incidentally have been wrong before, and get your affairs in order? It is so hard to determine when a misstep could literally mean the difference between living and dying. Blessings to you....

Maxone73 profile image
Maxone73 in reply toFighting4u

If it does not affect SOC, why not trying? As I said, for reasons completely unrelated to the theory that cancer is caused by viruses, it could even work. There are guys on the site that use it with success in various combos, mostly together with SOC so you do not know which one is doing the job. And honestly, you do not care about which one is doing the job as long as it does the job! Does he have any genetic mutation?

On this website look for arx517, amg 509 (xaluritamig), Cu67, Actinium 225, you will find links to some trials that could be of interest, even if I don't know where you are located, if you can travel and so on...personally I have read that Cu67 can be administered after Pluvicto and it should be much more powerful, the first results confirm this

Fighting4u profile image
Fighting4u in reply toMaxone73

Thank you so much for the info, I will definitely check those out! Take care…

dk73 profile image
dk73

we stopped after 4 due to major spread of bone mets: skull to femurs. PSA went from 27 to 235: alkaline phosphate was over 230. He is now on Jevtana to stop the spread. PSA is 39. Once it plateaus the plan is to either do half dose every 3 weeks or full dose every 6 weeks. We are in our 8th year of treatments: started with surgery/radiation. He is 71

Fighting4u profile image
Fighting4u in reply todk73

Thank you for the info. My husband's RO and MO kept telling us we did not need to do a bone scan or any scan at mid-point even though his PSA was increasing at an incredibly alarming rate and we believed them. In hindsight we should have insisted because we have lost very valuable time. Starting with the 4th injection, we questioned the logic of moving forward with the Pluvicto injection. I am happy to hear that your Drs. were more concerned with your husband's actual survival rather than any statistical information on Pluvicto that they were collecting. Blessings to you...

sandystarfish profile image
sandystarfish

really wonder about Pluvicto - not many success stories are they?

Chewiemo profile image
Chewiemo in reply tosandystarfish

about 2 years ago I was diagnosed as stage 4 Gleason 8 and started Lupron adt in sept 2022. I started zytiga in Jan 2023 and pluvicto at the same time. I had maximum 6 treatments. By April 2023 my psa was undetectable. Today I am still undetectable and my multiple bone Mets are considered dead and a a debris field. I am in complete remission

I do not know which treatment gets credit but my doc is amazed at results. I was 70 at diagnosis and I was able to get pluvicto in clinical trial.

gsun profile image
gsun in reply toChewiemo

That’s exactly what we need. Pluvicto early on , not as a Hail Mary at the end.

Maxone73 profile image
Maxone73 in reply tosandystarfish

It seems that when it works it does magic! But yes, it’s always a Hail Mary, even if now at ESMO 2024 they presented the results of a trial that could make pluvicto first line.

Skifanatic profile image
Skifanatic

I finished six rounds in December and my scans in January showed complete remission. Considering the stories I’ve read about other responses, I feel fortunate and grateful but also realistic that there is likely still cancer and it will, at some point, reemerge on my scans. My PSA has been undetectable for some time. I alternate now between a Choline-11 and PSMA-PET scan, every three months, and I am on Lupron and Nubeqa indefinitely. I’ve read here and in other places that, roughly speaking, Pluvicto works for a third of patients, has no impact on a third, and has a negative effect on a third. I’m not sure how true those numbers are, but just repeating what I’ve read. Good luck to your husband, I hope he finds an effective course of action.🙏

Fighting4u profile image
Fighting4u in reply toSkifanatic

Thank you for your well wishes. I am happy to hear that Pluvicto has worked for you and I do believe that it is a wonderful new therapy for those that it does work for. Wishing you continued success and blessings in your journey.

sandystarfish profile image
sandystarfish in reply toSkifanatic

Wow this us so encouraging

God_Loves_Me profile image
God_Loves_Me

Do you have access to AMG 509 or ARX517 Clinical trials ?

Fighting4u profile image
Fighting4u in reply toGod_Loves_Me

I am not familiar with those, but we have an appointment tomorrow at Mayo Jacksonville and I will certainly add those to our list of questions, thank you! Blessings to you....

Karirudy profile image
Karirudy

My husband finished 6 rounds of Pluvicto in January '24. His scans during treatment remained the same but his PSA did go down. His first scan after the end of treatment showed that the cancer was spreading. We actually skipped his in person oncology and Palliative care visits in July and instead sent labs from here in Mexico. We are heading to San Diego this week. We have had 6 months at home for the first time in 5 years (since diagnosis) and though his PSA had risen in July he is still relatively stable. I guess what I'm saying is - don't believe the worst. Despite the what we originally read about Pluvicto, it has given him well over a year and still counting. We are expecting to have kids and grandkids visiting in October. Other than that, we take it a day at time. The next treatment would be "more chemo" and my husband has decided not to do that. One day at a time. Blessings to you both.

Fighting4u profile image
Fighting4u in reply toKarirudy

Thank you so much for the info and kind words, totally agree one day at a time. It is wonderful to hear of the positive results your husband is experiencing from his Pluvicto treatment. Wishing him continued success on your journey. Blessings to you both as well.

j-o-h-n profile image
j-o-h-n

Greetings Fighting4u,

Would you please be kind enough to tell us your dear Husband's age. Thank you and God Bless.

Good Luck, Good Health and Good Humor.

j-o-h-n

Fighting4u profile image
Fighting4u

He just turned 68, diagnosed a few months before his 63rd birthday. Blessings to you….

Tall_Allen profile image
Tall_Allen

If his bloodwork is still OK, he can have a combo therapy with Xofigo:

prostatecancer.news/2021/02...

Fighting4u profile image
Fighting4u in reply toTall_Allen

Thank you for the info, I will check them out! Blessings to you…..

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