Pluvicto is available in Ontario, at least: my oncology team told me about Pluvicto in late 2021 or early 2022 as a future option if/when ADT and Apalutamide stopped working and my cancer became castrate-resistant. As the article says, it's just not available routinely as an *early* intervention yet.
It's possible that because they're a major cancer research centre, they have easier access. They were able to get me special approval for Apalutamide before it was in the Ontario formulary, for example (it took less than a week).
I feel like a “Commodity or an article of trade .
There is no known or established treatment for Stage 4.
I am an Internist (Internal Medicine, Categorical) practicing in NJ since 1995.
My father was a general surgeon and died with his prostate cancer at age 84.
I was not surprised when my PSA was found to be 4.2 at age 47. I was in absolute denial but new for certain I did not want to go through what I’ve seen people live through just to stay alive.
I refused a biopsy.
About 2 years later my PSA was up to 11. I was just not going to deal with this as a busy, solo physician in private practice; no way I could. Again, I let things ride.
It turned my entire life upside down and robbed me of any and all ambition.
I eventually consulted a Urologist at age 54 BECAUSE I was in acute retention of urine. My PSA was then 64. Still, I went back to work; I had a staff of 6FTEs and my bills didn’t care that I had to carry an in dwelling catheter for a while.
I then agreed to try Lupron and Bicalutamide. After the most miserable 6 months of my life, I decided to discontinue the hormone therapy. No words can describe the fatigue and other side effects I suffered from ADT. Every possible side effect I found in the texts and Google was me.
At age 56 after a year off ADT, my PSA was 264. No need for tissue biopsy then; it was unquestionably an aggressive Stage 4 cancer.
Next manifestation was a rather acute T7 compression syndrome from tumor in my thoracic vertebrae confirmed by MRI with contrast for which I had emergency surgery.
Before I could recover from the surgery, including T5 - T9 fusion after laminectomies, I suffered a massive 98% blockage of my LAD, the so-called widow-maker (I had resumed ADT). I waited 4 days at home hoping to die but the pain was so severe that I eventually called 911. The artery was stented within 1 hour of my ER arrival and I was back home and at work 6 days later.
2 months after my heart attack and almost exactly one year after my spinal fusion I had another acute compression syndrome, same location. Apparently the cancer came back 4 times as large and much more aggressive than the initial episode. The surgery took about 6 hours and I couldn’t believe I was still alive when I recovered from anaesthesia.
This last surgery on March 1st 2024 was the last straw for me; I don’t qualify for Hospice care, Pain management means I can’t work because of the amount of narcotics required to barely take the edge off.
The worst part for me is not the pain in my spine from all the rods and other hardware in my back but the worst gastrointestinal complications known to science. My insides stopped working entirely and I had severe diverticulitis and peritonitis that required 6 weeks of antibiotics post-op. I was in the hospital for 6 weeks.
I looked at my EOBs for the first time 2 days ago just for 2024. I don’t know how doctors survive, or hospitals for that matter.
The Neurosurgeon billed $57,000 but Medicare paid $2000. My secondary, AETNA, paid $800. Yes, those numbers are accurate.
The total hospital bill for all the 6 weeks, testing, imaging and all direct work done by the hospital was $285,000; Medicare approved and paid $18,000 while my secondary, AETNA paid just short of $1,800. These payments were approximately less than 5% of the cost of care. Same applied to the various physician Consultants who were involved in my care.
How can this be possible in the USA where we blow up 2 Billion Dollar Missiles for naught? How?
I sympathise with your situation .
The clear message here is " DO NOT IGNORE YOUR REGULAR PSA RESULTS " . and educate yourself on the warning signs of cancer etc . I am amazed at the number of men who even refuse a simple Digtal Rectal Exam ( DRE ) to test your prostate .
Your early retention was likely the result of untreated BPH , which would have been found with the DRE .
Finally , anyone whose father had prostate cancer is at 5 - 6 times higher risk to also get prostate cancer .
This is a sad - preventable story .
At the start, I had no symptoms, was getting terrible pain in my leg. At diagnosis I had psa 932, stage 4 Metastatic, top to bottom. Started chemo and firmagon, after a few months the pain stopped. Now 16 months in, I deal with the fatigue, which is no where near the level of having pain. Never gave thought to getting prostate cancer at 68 but here I am. I understand quality of life, fatigue is one thing, pain is the worse. I'm hoping they have a treatment for you, maybe no cure right now but as they told me, they can control it. Please keep coming back to this site, so many that you can relate to who are very supportive. I've been saying a prayer for you since first reading your post. Best to all.
That's a tough ride, having so many metastases. It sounds like you've had good treatment. Did you have radiation to the prostate as well, to deal with the source of the cancer, or did you and your care team decide that would be too much on top of the chemo and ADT? Have you asked about adding an ARSI like Erleada to the Firmagon to lengthen its effectiveness?
(I think we might have discussed this before, so apologies for any repetition.)
(Replied privately. I don't want to put personally-identifying information in a public post that's visible to web search engines, but I'm happy to share more with anyone here who would like to start a private conversation.)
That's a tough ride, having so many metastases. It sounds like you've had good treatment. Did you have radiation to the prostate as well, to deal with the source of the cancer, or did you and your care team decide that would be too much on top of the chemo and ADT? Have you asked about adding an ARSI like Erleada to the Firmagon to lengthen its effectiveness?
(I think we might have discussed this before, so apologies for any repetition.)
So it's a little funny to me, I didn't decide on course of treatment, I had no idea what prostate cancer can do to me. My funny was I only came here for what must be a muscle pull in my leg that is not healing. Dr said I have stage 4, I fell off the chair, (not really), Dr said they can control it and off I went. Had no idea what treatment involved. After about 2 months, pain stopped. As timing goes, I wasn't about to go look for 2nd opinions. I'm impressed with the care I received, Did a walk in on Wednesday, seen a bone specialist on friday with x-rays, mri on saturday and in the Oncologist office monday morning. Oh and no radiation, Dr did add I was finished with chemo, for now. I recently had CT scan and MRI and appears to be stable. I couldn't be more happy with my care center. Best to all.
I sympathise with your situation .
The clear message here is " DO NOT IGNORE YOUR REGULAR PSA RESULTS " . and educate yourself on the warning signs of cancer etc . I am amazed at the number of men who even refuse a simple Digtal Rectal Exam ( DRE ) to test your prostate .
Your early retention was likely the result of untreated BPH , which would have been found with the DRE .
Finally , anyone whose father had prostate cancer is at 5 - 6 times higher risk to also get prostate cancer .
This is a sad - preventable story .
Although my story was probably preventable, I chose not to go for checkups. I only went if I had a problem that didn't go away. When my leg pain didn't go away, I finally went to find out why. Stage 4 metastatic prostate cancer. Before the pain I had no noticeable symptoms. I have no regrets about not going. I have even given thought about getting a primary care doctor, just haven't done it yet. I see my Oncologist once a month including blood work. Although fighting fatigue, I'm having a good time. Best to all.
Although my story was probably preventable, I chose not to go for checkups. I only went if I had a problem that didn't go away. When my leg pain didn't go away, I finally went to find out why. Stage 4 metastatic prostate cancer. Before the pain I had no noticeable symptoms. I have no regrets about not going. I have even given thought about getting a primary care doctor, just haven't done it yet. I see my Oncologist once a month including blood work. Although fighting fatigue, I'm having a good time. Best to all.
I am sorry for your pain. It sucks.
In November 2023 I had an abdominal aortic aneurysm surgery. On February 18th of this year, 2024, I was told I had prostate cancer which was found while reviewing images of how my major surgery was getting along
Gleason score is 4 + 5 and PSA was 79. Metastasized to my spine, ribs, pelvic area. I feel that pain
Today, July 14, 2024.
PSA is 0.0 Pain is almost all gone.
Here's what I did after a lot of research .
ATTITUDE:
VICTORY OVER CANCER OR ANY HEALTH RELATED ISSUE IS A DECISION, IT IS NOT JUST A HAPPENING. Please repeat that three times until you understand it. I repeat it three times a day.
Next find any of your friends and family who believe in the power of prayer and ask to be put on their prayer chain. They will be sending you energy whether you believe it or not.
Next, start looking into yourself. You are made up of 50 trillion cells cooperating to help you stay alive. For some reason many of yourselves want to hurt you and now, with the cancer some of them even want to kill you even though it will kill them. Many of your cells are being stupid. Start talking to them. Your immediate life and death situation is your prostate cancer so tell the 49 trillion 500 billion cells that want to live that there are 500 billion cells who want to live forever and by so doing will kill the host, which is you. That is stupid. Talk to the 49 trillion 500 billion cells that want to live and put them to work for you. Tell them to search and destroy any cancer cell s they find and kill them, no mercy.
Start looking at this as an opportunity. Stop being a victim. Your purpose on Earth you should get through all this shit so you can come out the other end giving people hope by telling them how you overcame such adversity. Hurry up
We need you out here on the battlefield of life giving hope to the
hopeless.
BODY CHEMISTRY
Cancer cells with any kind thrive on acidic environment. Your goal is to change your body to an alkaline environment. Start drinking alkaline spring water. Search the internet for alkaline based fruits and vegetables, broccoli and tomatoes come to mind.
NUTRITION
STOP ANY AND ALL SUGAR INTAKE IMMEDIATELY. IT IS ONE OF THE ENERGY SOURCES THE CANCER CELL S LOVE
Start eating alkaline based vegetables.
Drink lots of green tea and tomato juice.
Stop eating any and all processed foods like deli meat, hot dogs.. try to stay on chicken turkey and fish. If you have to have red meat get the grass fed meat. There is no need to become food Nazi just stay away from as much sugar as you can.
Supplemental diet
Find capsules in a health food store or online that have turmeric, garlic, ginger, and begin taking them immediately while also finding reishi mushroom and turkey tail mushrooms. Take two of them in capsule form every day. Mushrooms have been used by the Chinese for over 3,000 years. They are used to rebuild immune systems that have been compromised. You'll be surprised in two or three weeks, really. You want 10,000 mg of vitamin C everyday and finally, you need to research online to find stuff to fix the biome in your gut.
Follow the above protocols everyday for 3 weeks and then go get your blood tested again.
I also had 5 treatments of targeted radiation aimed at the idiot cells that got away from the prostate gland.
Restart your ADT as soon as possible.
DISCLAIMER
I AM NOT A DOCTOR NOR DO I PLAY ONE ON TV. All of the above are what I worked out for myself that brought my PSA from 79 to 0 in about 5 months.
Stay alive doctor. We need you to help spread hope.
"STOP ANY AND ALL SUGAR INTAKE IMMEDIATELY. IT IS ONE OF THE ENERGY SOURCES THE CANCER CELL S LOVE"
I find this confusing. "Sugar" is a generic term. For example, there is glucose. Sometimes called "blood sugar", it is the main (only?) fuel for our brains. And our muscles use it a lot. Then there's fructose, found in many fruits and vegetables. It can be good ("an apple a day...") or bad (high-fructose corn syrup), or do we mean sucrose, table sugar, from things like cane and beets? There may be other sugar variants. Some of them are essential to survival.
"STOP ANY AND ALL SUGAR INTAKE IMMEDIATELY. IT IS ONE OF THE ENERGY SOURCES THE CANCER CELL S LOVE"
I find this confusing. "Sugar" is a generic term. For example, there is glucose. Sometimes called "blood sugar", it is the main (only?) fuel for our brains. And our muscles use it a lot. Then there's fructose, found in many fruits and vegetables. It can be good ("an apple a day...") or bad (high-fructose corn syrup), or do we mean sucrose, table sugar, from things like cane and beets? There may be other sugar variants. Some of them are essential to survival.
I wouldn't take most dietary advice in this forum too literally. Cancer makes a person feel out of control, so it's natural to try to find ways to feel in control again, including following dietary fads.
As long as the diet includes a healthy balance of nutrients and doesn't interfere with primary medical treatment, there's no harm.
I wouldn't take most dietary advice in this forum too literally. Cancer makes a person feel out of control, so it's natural to try to find ways to feel in control again, including following dietary fads.
As long as the diet includes a healthy balance of nutrients and doesn't interfere with primary medical treatment, there's no harm.
Good idea. Like this conversation. I am 3.7 years in on this journey and have complete labs done every three months. Every 6 months I visit with an Oncology Nutritionist, epically helpful. She's trained me to forget about the Diet do's and don't and focus on "Nutrition." Everyday fruit, veggies, lots of greens, nuts, couple cups of yogurt w/berries, little bit of bread/toast. Yes, on a burger once in a while. My nutrition is guided by quality over quantity, keep it fresh. If I were to write Advanced Prostate Cancer book chapter one would be titled "The Joy of Eating Well."
Who is your Uncologist in Canada ?
I sympathise with your situation .
The clear message here is " DO NOT IGNORE YOUR REGULAR PSA RESULTS " . and educate yourself on the warning signs of cancer etc . I am amazed at the number of men who even refuse a simple Digtal Rectal Exam ( DRE ) to test your prostate .
Your early retention was likely the result of untreated BPH , which would have been found with the DRE .
Finally , anyone whose father had prostate cancer is at 5 - 6 times higher risk to also get prostate cancer .
This is a sad - preventable story .
That's a tough ride, having so many metastases. It sounds like you've had good treatment. Did you have radiation to the prostate as well, to deal with the source of the cancer, or did you and your care team decide that would be too much on top of the chemo and ADT? Have you asked about adding an ARSI like Erleada to the Firmagon to lengthen its effectiveness?
(I think we might have discussed this before, so apologies for any repetition.)
(Replied privately. I don't want to put personally-identifying information in a public post that's visible to web search engines, but I'm happy to share more with anyone here who would like to start a private conversation.)
So it's a little funny to me, I didn't decide on course of treatment, I had no idea what prostate cancer can do to me. My funny was I only came here for what must be a muscle pull in my leg that is not healing. Dr said I have stage 4, I fell off the chair, (not really), Dr said they can control it and off I went. Had no idea what treatment involved. After about 2 months, pain stopped. As timing goes, I wasn't about to go look for 2nd opinions. I'm impressed with the care I received, Did a walk in on Wednesday, seen a bone specialist on friday with x-rays, mri on saturday and in the Oncologist office monday morning. Oh and no radiation, Dr did add I was finished with chemo, for now. I recently had CT scan and MRI and appears to be stable. I couldn't be more happy with my care center. Best to all.
Although my story was probably preventable, I chose not to go for checkups. I only went if I had a problem that didn't go away. When my leg pain didn't go away, I finally went to find out why. Stage 4 metastatic prostate cancer. Before the pain I had no noticeable symptoms. I have no regrets about not going. I have even given thought about getting a primary care doctor, just haven't done it yet. I see my Oncologist once a month including blood work. Although fighting fatigue, I'm having a good time. Best to all.
I envy your courage and positive outlook in your situation .
Keep truckin -- you deserve a break .
"STOP ANY AND ALL SUGAR INTAKE IMMEDIATELY. IT IS ONE OF THE ENERGY SOURCES THE CANCER CELL S LOVE"
I find this confusing. "Sugar" is a generic term. For example, there is glucose. Sometimes called "blood sugar", it is the main (only?) fuel for our brains. And our muscles use it a lot. Then there's fructose, found in many fruits and vegetables. It can be good ("an apple a day...") or bad (high-fructose corn syrup), or do we mean sucrose, table sugar, from things like cane and beets? There may be other sugar variants. Some of them are essential to survival.
What "sugar" should we specifically eliminate?
I wouldn't take most dietary advice in this forum too literally. Cancer makes a person feel out of control, so it's natural to try to find ways to feel in control again, including following dietary fads.
As long as the diet includes a healthy balance of nutrients and doesn't interfere with primary medical treatment, there's no harm.
Good idea. Like this conversation. I am 3.7 years in on this journey and have complete labs done every three months. Every 6 months I visit with an Oncology Nutritionist, epically helpful. She's trained me to forget about the Diet do's and don't and focus on "Nutrition." Everyday fruit, veggies, lots of greens, nuts, couple cups of yogurt w/berries, little bit of bread/toast. Yes, on a burger once in a while. My nutrition is guided by quality over quantity, keep it fresh. If I were to write Advanced Prostate Cancer book chapter one would be titled "The Joy of Eating Well."