My prostate cancer has returned and now metastasis to right rib and T 10 spine and L1 spine. My urologist and oncologist have me on Lupron every 3 months injections-&- XTANDI daily The PSA has been under control = 0.0064. The FATIGUE - MUSCLE WEAKNESS is significant. BUT -- IF THE MEDICATIONS ARE DOING THEIR JOB - them MY JOB IS TO TOLERATE THE SIDE EFFECTS. but is sucks - quality of life is diminished and it does require greater soul searching/ introspection to fight these side effects
We need you and these exellent analyses. Thank you. You don't get this from most of the specialists and it seems a common tale. What is lacking is a project manager, someone with an overview who can support you through this confronting reality. This person should be assigned soon as you have the urologists' diagnosis. At 73 I'm still lucid enough to manage but there will be others, who are less able to cope with the lack of wholistic empathy for the patient. "You're not alone" should be on the door of every specialists' office.
At the CROSS CASTRATION INSTITUTE in Alberta, you get treated like a concentration camp inmate, no say in how you will be treated or what toxic shit will be injected into you, and you will be coerced, deceived, and extorted into ADT CASTRATION without your FREE AND FULLY INFORMED CONSENT. Then, you get kicked to the curb with no followup or side effect attention. You are damned well alone, treated like just another lamb to the slaughter
Agreed. You really need someone like a patient's advocate. I was just diagnosed and have Kaiser so they have PCa "team" but the team so far is really the radiation oncologist and the urologist, making their pitches for each one's specialty, radiation therapy or prostatectomy. Then the decision is left up to the patient. I'm grateful for the guidance I'm getting but there is such a welter of info out there, that leaving it up to you to make one of the most important decisions in your life is maybe not the best solution. PCRI does help fulfill some of that patient advocate's role.
Firmagon monthly for a year was a nightmare for me , a massive rash and a lump at the injection site , switched to Decapeptyl (which you didn't mention ), every six months and really works well, btw i put on 10 kg but now lost 8kg thanks to your advice on diet and sports
Interesting that they kept going back to it time after time as some doctors consider it to be a 30 day trial medicine or a gateway to longer last ADT meds. I will add that my experience with Firmagon was brutal and I am glad it's worn off but I am also now on Lupron and Zytiga fore the foreseeable future.
@@papastove1395 thanks for the info -) I have stopped now Zytiga after two years , 3 months ago , it sure if I have less side effects , still get serious hot flashes etc , not sure how long I will continue Decapeptyl , will know in September-) I’m full remission so hopefully-?
@@donaldpiper9763 I'm curious to know how your body has deteriorated. I'm on Orgovyx, and though the side effects can be harsh, I'm working out hard to keep my body strong (relatively speaking).
My PSA was 5000 when I was told I had advanced prostate cancer. In most of my lymph nodes. With Lupron shots my PDA when last tested was 0.45. But then my testicles almost vanished so not surprised,! Yes I have little energy but that started from a bad heart with failed quad bypass and niw in a pacemaker. The worst is day long sweats that I need my head wrapped in a towel. Soaked Tee shirts every few hours. Make like miserable. At 76 should I just stop the shots and hope the sweats go away. Already on pain med every four hours. Never get a comment😢
Yes Ozempic could help one on ADT to control weight, which is why I specifically asked my VA Endocrinologist for it. I was told I was not "fat enough" for it. I had gained about 30 pounds over my normal 145 pound weight on Lupron, which was hellaciously fat "for me". I asked for it to be given only while I was on ADT, not permanently. I consider this Endocrinologist to be incompetent, ignorant, or both. It doesn't do much good when we DO the research, find out what is possible by listening to experts like Dr Scholz, but then the ignorance of certain medical hacks, who control these drugs thanks to the FDA, refuse to follow the expert's advice, EVEN WHEN WE HAND IT TO THEM ON A SILVER PLATTER.
My radiation oncologist said nothing about what I have learned the hard way. Guess what? I never dreamed that as a male all of my head hair would fall out when taking Lupron. It has. It is not supposed to affect head hair, right? Wrong. It did for me. I'm on this drug for one month now, and although I have male pattern baldness anyway within just this one month my testosterone level increased so much that all of my head hair fell out and I am bald.
Orgovyx seems to be the new go-to for short course ADT associated with intermediate risk Gleason and initial radiation therapy. Apparently the side effects are less (given the quick cessation after the last dose) and the cardiac events are less and patients prefer daily pills... but the advantage of hormone suppression during radiation treatment is still there. I’m wondering if this relatively new drug now means more docs prescribe ADT with Gleason 3-4 (given the cost-benefit versus Lupron, for example).
I'm on Orgovyx and Nubeqa. For me, the most significant side effects are psychological (amplification of anxiety). I do experience hot flashes, but only a few times a week. I also take Flomax (Tamsulosin), which eases urination when the prostate is enlarged, and find its side effects worse. Flomax, for me, causes dizziness and fatigue. Thankfully, I'm off it in a few weeks as my PSA is now down to 2.3 after its initial high in March this year of 425(!)
I was on Eligard for four months while undergoing my radiation treatments. My testocerone never came back...even after three years, I am not even in the Low range. My PSA has been undetectable for three years now and my Doc is thinking about prescribing me testocerone. I am 71 and have no energy at all. All kinds of problems three years after...had a stricture removed by a erethotomy and now must self-cath every fifth day to keep the scar tissue from returning. I am also seeing a Pelvic Floor therapis because I now have perineum pain and urgency to pee...every single hour. I just get very little sleep and am in constant pain. The life I knew is over.
Did fine on Trelstar. He is 100 percent correct about fitness. I am 6 months in. I lost 14 pounds packed on some muscle. I do 25 minutes of resistance training 5 days a week that is all. I do mostly compound movements as i can hit a lot of muscle groups at the same time. That 25 minutes is working out until my muscles are very tired and sore. It does not matter what shape you are in to start as everyone has the ability to do something.. only annoying symptoms are the darn hot flashes but i am saving on the heating bill lol i am Canadian and it is getting chilly at night. If you start your day with a cup of organic steel cut oats protein powder mixed in 2 tablespoons of flaxseed or hemp hearts cup of bluberries all mixed in your blood sugar will be steady as a rock and you will be golden. I promise but you really have to be committed. Protein levels high no processed
How's your libido, or should I ask where did your libido go??? ...Hope you do better than most men on these toxins because your side effects will get much worse the longer you are on them. Watch out for brain fog, drug induced dementia, Bone loss, permanent penile atrophy unless you take extraordinary steps to get oxygenated blood into penile tissue, severe mood swings, depression, lack of ejaculation and orgasms, fatigue..and the most frightening of all, permanent CASTRATION as up to twenty percent of older men NEVER RECOVER ABOVE CASTRATE LEVEL and suffer the rest of their miserable lives as ZOMBIE EUNUCHS. .... Good luck and best wishes for a complete cure and good quality of life
Are you a salesman for the drug companies?? Do you enjoy surviving as a ZOMBIE EUNUCH on ADT?? ..Most men find the horrific side effects of ADT CASTRATION to be insufferable. ....I will never allowed that toxic shit to ever be injected into me again. It not only destroys quality of life, but it reduces overall survival by two years.
Great video, thanks for putting it out. An idea for another one is "advancements and use of the PSMA PET scan". As this is relatively new technology it would be very helpful to hear more about its use as a diagnostic tool and how that is affecting treatment plans across the spectrum. How is Dr. Sholz using it in his practice?
My husband is being treated at the Mayo Clinic and had the PSMA Pet scan (he's been part of a study) when he was first diagnosed. It has helped guide his treatment, because it is more accurate in finding metastatic prostate cancer than traditional scans, such as CAT, bone or MRI's. It was determined that he had low-volume metastatic prostate cancer, so he initially had 26 rounds of radiation and has been on ADT (Lupron/Abiraterone) for over two years. His PSA dropped like a rock from 24 within two months and has remained negligible( < 0.02) since then. Should his PSA start to rise, they will do another PSMA Pet scan to see where the cancer may be showing up again. Once that is determined, he can move forward with a new treatment plan, which would likely include chemotherapy. PCR has previous videos that address the PSMA Pet scan.
Please discuss Casodex. aka Bicaludamide monotherapy as an alternative to LUPRON ELIGARD type ADT CASTRATION... MEN need to have some agency over their own bodies and not continue to be coerced and deceived into the cruel and barbaric chemical castration effects
Your service for patients is invaluable (and honorable). Thank You! Does an orchiectomy (if a patient is projected to be on lifelong ADT) an option that could allieviate some of the side effects/cumulative damage done from long term (Lupron Depot) in my case?
I m 68 yrs old,dx 2017,Had RP,positive margins,extracapsular,Gleason 3+4. First Psa 0.34. Did imrt 2019,followed by Firmagon 2022 for 5 months,switch Elegard 3x3 months. Stopped 10 months until Psa 0.29,now on Zoladex. I wanted to know should take Enzalutamie as in Embark trail with Zoladex as a combo. When do I stop Zoladex due side-effects
Hello my father (67yrs) was diagnosed with PC, a low grade adenocarcinoma gleason score 3+3, his psa was 14 what is best choice, will radical prostectomy completely cure him?
His PSA is quite high. But it may be if his prostate is large. You should know the volume of your father's prostate. Look up PSA density on the web. Don't know his biopsy results,.., the information provided is too brief, but GS6(3+3) cannot metastasize, so it means that the cancer should be localised only in prostate. You should definitely buy and read the book by Mark Scholz MD: The Key to Prostate Cancer from 2018. Not only for your father but also for you. Prostate cancer is one the cancers that is genetic. So it means that you are in higher risk of having prostate cancer in the future. Radical prostectomy would probably cure him but you should not rush into first option. You should consider also other options: Active Surveillance and radiation.
Stop downplaying the horrific effect that ADT CASTRATION has on mental function. The brain fog is so horrific that it is actually unsafe to operate a vehicle and the effect lasts months or years after the ADT toxic shots are suppised to expire. You likely will no longer be able to multitask and it will even be difficult to concentrate on one task at a time. Making breakfast, you open the fridge door and don't remember what you wanted to get. You have to constantly repeat to yourself EGGS, EGGS EGGS. ADT CASTRATION is NOT reasonable well tolerated. It is cruel and barbaric quality of life destroying and life shortening treatment that may only be worth the harm it causes in the most advanced metastatic cases.
Thanks for another great video. I was on Lupron for a few years, but last year my urologist started using Eligard. The main thing I noticed is that the Eligard injection was much more painful and the pain lasted for about a week.
PSA 49, Gleason 4+4 and 4+5, PSMA shows no evidence for metastatic disease. Today doctor gave me 3 month Lupron shot with Casodex 50mg daily. He wants to reassess in 3 months to see if hormone therapy is working, followed by surgery or RT. Does this sound like a good treatment?
It's a good start. I don't know your biopsy results, clinical stage and other critical information. Your PSA is very high. If you have GS(4+4) and GS(4+5) which means aggressive cancer then you should think more of RT+ADT instead of surgery. According to Roach formulas you have 63% probability that lymph nodes are positive. Don't forget that PSMA shows only tumors of 5mm and more. There may be micrometastases. It means that RT would probably not be only to prostate but also to pelvic area. You should definitely buy and read the book by Mark Scholz MD: The Key to Prostate Cancer from 2018.
Beware....the horrific side effects come on after you have been on this toxic medication for several months. In fact, you will likely feel wonderful for the first month because of the testosterone flair, but watch out as you turn into a Zombie eunuch from the horrific side effects. Pray that you will remain one of the lucky ones who avoid the worst of this cruel and barbaric ADT CASTRATION
