I thought about sending him the protocol for ivermectin and fenbendazole for cancer but I don't know about contraindications with any drug he's taking. There is a lot of good data on these drugs against cancer.
My Journey Begins, Cancer and Medicare, Maybe this will help some others one day
- Thread starter alarmguy
- Start date
"drug is used for prostate cancer that has spread and high risk which they labelled me as"
Your scans show no sign of any spread so why do they label you as high risk??
Thanks for the details. You are correct in that the individual has to be ELIGIBLE to enroll in Medicare prior to 2020. He did sign up for the no-cost Part A in 2019 to avoid the late registration penalty and to ensure future eligibility for Medigap Plan F.
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- Apr 22, 2016
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Excellent, Part A began in 2019 then Plan F will be an option to choose, perfect!
Also, the late enrollment penalty would not apply, even if your friend did not sign up for part A as long as creditable coverage has been held.
One thing everyone needs to realize about cancer treatments is that they can show you statistics on the outcomes of every different Rx. A radiologist can show you good stats on radiation therapy. A surgeon will show you the same results with surgery. All the new Rx's can show you good results. But these are just numbers derived from thousands of individual numbers. You are not a statistic..you are an individual whose response will be different and unique.
In my case in 2012, radiation had the same success rates as surgery. My radiologist was a surgeon but gave me all three main options at the time. If I had radiation and the cancer came back my only real option would be chemo therapy. If I had robotic surgery and it came back I could still have radiation. I chose robotic surgery and it came back about 3 years later. I had radiation which gave me side affects that I still suffer from. And impotence is one of them. The weakness in all prostate cancer therapy is they rely too much on biopsies and Gleason scores which are best guesses. The surgeon told us he got it all cleanly but the pathology report reported cancer at the margins which lead to reoccurrence.
@alarmguy has many things going for him. 12 yrs of tech improvement. He has had scans that weren't available to me. The machines used on him have been vastly improved. So he has better odds going for him.
In my case in 2012, radiation had the same success rates as surgery. My radiologist was a surgeon but gave me all three main options at the time. If I had radiation and the cancer came back my only real option would be chemo therapy. If I had robotic surgery and it came back I could still have radiation. I chose robotic surgery and it came back about 3 years later. I had radiation which gave me side affects that I still suffer from. And impotence is one of them. The weakness in all prostate cancer therapy is they rely too much on biopsies and Gleason scores which are best guesses. The surgeon told us he got it all cleanly but the pathology report reported cancer at the margins which lead to reoccurrence.
@alarmguy has many things going for him. 12 yrs of tech improvement. He has had scans that weren't available to me. The machines used on him have been vastly improved. So he has better odds going for him.
First let me say the purpose of this whole thread is some guys are afraid to talk about the subject. I mean, I know of people that under no circumstances did they want anyone to know, they have told their spouse not to tell anyone. I can understand those feelings, its a delicate subject but no longer do I think so or care if it can help anyone. A decade ago a close childhood friend, born the same time in 1956 that we knew each other. Haven't seen him in about 2 decades now, but still text once in a while. He told me to make sure I get my annual check ups as he had prostate cancer operation and he is an open book to anyone if they have any questions. I guess that and now 7 years of high PSAs for me, 4 biopsies. I feel the same way. Heck we just moved into this new community and I easily have the conversation with any of my neighbors. We are all human, nothing to be ashamed of and being able to live instead of die is an easy option to choose. Which leads me to my post below this is how unashamed of anything anymore.
Ok, so as far as the drug I am taking the last two weeks and will continue to take for 6 months. Orgovyx is the brand name (relugolix is the drug) Its is a hormone blocker, a pill take once a day, I think my insurance pays $77 a pill and around $14,000 to $18,000 for the 6 month treatment but will know more once I see an actual statement. As told to me by my doctors a very effective newer one. From day one it starts knocking down your testosterone and the benefit I am told by my doctors (assuming your insurance will pay for it) is once you finish, in my case 6 months later within 2 two weeks your testosterone is rapidly climbing or already has.
The purpose in MY CASE as directed by MY doctors is to deprive the PSA cancer of Testosterone of which is uses to survive. That in addition to radiation (in my case) my doctor calls a cure with an expectation in the majority of cases for 15 years.
So what does this drug do to me. It deprives my body of testosterone. Everyone is different when it comes to side effects. I have only been on it 2 weeks and I have 5 months and 2 weeks to go. When I told my Medical Oncologist last week what I was experiencing he told me I wouldnt be surprised if you were down to zero now. He ran a battery of tests, all came back good but the main purpose of this post is my testosterone. Form what I understand for this treatment is they like to see 50 or less and new thinking is closer to 20 better.
Well my level just came in at 20. Perfect for the treatment. My PSA took a dive as well. I dont know how to interpret that as drugs affect the PSA test but either way it is a long way from 11.5 that was doubled to 23 because of the last drug I was taking at the time and this is all in just 14 days on the drug.
Now the side effects. Trust me, it amazes me I can talk about this so freely to anyone. Up until two weeks ago I would say an above average sex life. My wife jokes she wouldnt mind a rest. *LOL*
Anyway, technically I am chemically castrated and will be for the 6 month drug regimen. Good news is I am told, as posted once done taking the pills things ramp up again. If I had the operation that may never happen and the #2 reason I chose radiation. I am experiencing hot flashes! *LOL* Its amazing all of a sudden what seems like seconds you are hot and partially might start to sweat. Then it does away so fast that you forgot it happened like minutes. The other side effect of course, is for the first time maybe since 4/6th grade (sex isnt on my mind).
Just recently I can get cold for some reason. Its insane. I do sleep better some nights, others nights no. All drugs affect other people in others ways and not everyone will have the same.
So ends my journey so far. I'll update once radiation starts next month.
My hope is, anyone ashamed to talk to a doctor about the subject DO NOT BE AFFAID and even family, what is to hide? It happens and it is the number one cancer killer of men. TALK TO YOUR DOCTOR, BRING YOUR FAMILY INTO THE DISCUSSION, yeah it can be difficult but once you do it will get easier and easier. Do not rely on internet forums or internet advice, its great to learn things on internet sites, more so from respected cancer sites and hear peoples experiences but it is information that I used so I could understand and you can understand YOUR DOCTOR or DOCTORS as well as compile a list of questions for him/her. I also made my doctor aware that was my intention, so I could understand. No one is affected the same way and no one treatment is right for everyone. Knowledge is key so you can discuss it with your doctor!
I posted below 2 of my results as anyone in here knows I like to provide at least some resource for creditability when I post.
Anyone reading this, talk to your doctor, dont be shy, I think many of us are and it took me time too but after wanting to live and not die it becomes REALLY easy to do and also with your spouse. Of which I am very lucky to have. Two of 49 test results but this is related to the drug below. The others I guess were to make sure no bad effects and they all showed "normal"
Ok, so as far as the drug I am taking the last two weeks and will continue to take for 6 months. Orgovyx is the brand name (relugolix is the drug) Its is a hormone blocker, a pill take once a day, I think my insurance pays $77 a pill and around $14,000 to $18,000 for the 6 month treatment but will know more once I see an actual statement. As told to me by my doctors a very effective newer one. From day one it starts knocking down your testosterone and the benefit I am told by my doctors (assuming your insurance will pay for it) is once you finish, in my case 6 months later within 2 two weeks your testosterone is rapidly climbing or already has.
The purpose in MY CASE as directed by MY doctors is to deprive the PSA cancer of Testosterone of which is uses to survive. That in addition to radiation (in my case) my doctor calls a cure with an expectation in the majority of cases for 15 years.
So what does this drug do to me. It deprives my body of testosterone. Everyone is different when it comes to side effects. I have only been on it 2 weeks and I have 5 months and 2 weeks to go. When I told my Medical Oncologist last week what I was experiencing he told me I wouldnt be surprised if you were down to zero now. He ran a battery of tests, all came back good but the main purpose of this post is my testosterone. Form what I understand for this treatment is they like to see 50 or less and new thinking is closer to 20 better.
Well my level just came in at 20. Perfect for the treatment. My PSA took a dive as well. I dont know how to interpret that as drugs affect the PSA test but either way it is a long way from 11.5 that was doubled to 23 because of the last drug I was taking at the time and this is all in just 14 days on the drug.
Now the side effects. Trust me, it amazes me I can talk about this so freely to anyone. Up until two weeks ago I would say an above average sex life. My wife jokes she wouldnt mind a rest. *LOL*
Anyway, technically I am chemically castrated and will be for the 6 month drug regimen. Good news is I am told, as posted once done taking the pills things ramp up again. If I had the operation that may never happen and the #2 reason I chose radiation. I am experiencing hot flashes! *LOL* Its amazing all of a sudden what seems like seconds you are hot and partially might start to sweat. Then it does away so fast that you forgot it happened like minutes. The other side effect of course, is for the first time maybe since 4/6th grade (sex isnt on my mind).
Just recently I can get cold for some reason. Its insane. I do sleep better some nights, others nights no. All drugs affect other people in others ways and not everyone will have the same.
So ends my journey so far. I'll update once radiation starts next month.
My hope is, anyone ashamed to talk to a doctor about the subject DO NOT BE AFFAID and even family, what is to hide? It happens and it is the number one cancer killer of men. TALK TO YOUR DOCTOR, BRING YOUR FAMILY INTO THE DISCUSSION, yeah it can be difficult but once you do it will get easier and easier. Do not rely on internet forums or internet advice, its great to learn things on internet sites, more so from respected cancer sites and hear peoples experiences but it is information that I used so I could understand and you can understand YOUR DOCTOR or DOCTORS as well as compile a list of questions for him/her. I also made my doctor aware that was my intention, so I could understand. No one is affected the same way and no one treatment is right for everyone. Knowledge is key so you can discuss it with your doctor!
I posted below 2 of my results as anyone in here knows I like to provide at least some resource for creditability when I post.
Anyone reading this, talk to your doctor, dont be shy, I think many of us are and it took me time too but after wanting to live and not die it becomes REALLY easy to do and also with your spouse. Of which I am very lucky to have. Two of 49 test results but this is related to the drug below. The others I guess were to make sure no bad effects and they all showed "normal"
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I have been careful not to get into diagnostics as I am VERY careful to not offer medical advice or opinion but feel it is ok to answer your question because this is the text from my radiation oncology doctor in my test results taken my health portal after evaluation and right after my PSMA PET SCAN.
Small snippets of my doctors comments from my Dec meeting with him. One can look them up but do not want to cross the anyline to say anything further. Everyone is different and I am not a doctor, I am showing results below from my doctor. (Ps I appreciate your other comment to and reply is next post)
This is the category my doctor placed me in and a tiny portion of his comments as well.
"
"
In my case all the specialists I met with, including all three at Duke were concerned about my high PSA with such a small amount of cancer found. I think based on your own experience they were/are concerned that there is more going on. Even a PSMA scan isnt perfect but pretty good, As you found out, even a clean result after your removal avoided detection. Anyway the IIIA stage assigned to me is what the doctor assigned to me and seems to fit perfectly.
Source -
https://www.medicalnewstoday.com/articles/stage-3-prostate-cancer#what-it-means
This is pretty much the same impressions I was given when I met with 1 Radio Oncologist, 1 Surgeon, and 1 Medical Oncologist at Duke in their Cancer Clinic evaluation meeting where they spent the morning with my wife and I, all individually and then again at the end of the meeting, There just for me.
They all believe in their respective fields and to my wife and I AMAZINGLY non-partisan. Each one of the clearly outlined the risks, gave percentages of the outcome for each treatment. Both immediate side effects (which is typically surgery in my case) and Later term side effects (typically radiation)
They all completely neutral, it truly was put to me, what is most important to me regarding side effects. This meeting was a service of Duke (not free of course but insurance covered it), they were not there to sign me up as their patient, this was a consultation. They stressed that point, they were there for me. It was so cool.
Of course I could select them if I wanted. But they went so far if I wanted radiation I did not have to go to Duke being it was a 3 hour drive, that everything here on the coast the treatment is the same. I did get a name of a doctor they liked a lot and that is who I saw, if anything because of his personality. This is the doctor who eventually ended up ordering my PSMA SCAN, Duke also ordered one for me but between the two groups managed to get me the scan sooner and more local here 1 hour from where I live instead of 3 hours.
I noticed in my chart the results also went to Duke since they were the originator of the PSMA Scan.
What you posted was much the same I have learned when deciding. First lets keep in mind surgery on me would be an unknown, the Duke surgeon (which is where I would have chosen for surgery) made it known because of heavy scarring in my abdomen there is a 20% chance I will get cut open and closed up right away without being able to proceed. He actually suggested this might even push him to recommend to me and lean towards radiation but he was willing to do the operation. Because of scarring he said no robotic doctor he knows is going to attempt me.
So in my case, 1- as you posted removing the gland does not mean you are free from cancer. Undetected cells can remain if it comes back then it can be treated with hormone therapy. Even that is dicey in some cases, the cancer can learn to live without testosterone.
I am told with radiation and hormone therapy I will be free from cancer (or consider a cure). However the possible side effects are delayed by years in some cases and yes, that cancer can still come back. If it does, it is harder to treat being you cant get radiation again. With that said, they are making progress with retreating and I suspect (hope) that progress continues. Hormone therapy is still and option and they are in trials I think now with some new drugs for hormone resistant cancers.
I was also told, however more rare now, you could develop a cancer because of being exposed to radiation.
Yes, true, even from 2012 radiation treatments are more advanced. 12 years is a long time considering this type of radiation was almost considered barbaric by some doctors in the 1990s and some say still much preferred in the early 2000s.
Like I was told, OVER and OVER by every doctor I met, regarding my SPECIFIC case. There was no right or wrong choice. They suggested I go by what side effects I can live with on whether I wanted to attempt surgery or go with radiation.
One last time (you know how careful I am in here) Im sure you agree, anyone who finds out they have prostate cancer needs to consult with doctors and learn their options. It's a crappy cancer to have because of side effects but a highly survivable one that many other cancer victims of other types would gladly change places if they could.
No right or wrong and anyone going through deciding, talk to doctors and take action.
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Like I said, you have a lot going for you. And know that I know and have seen men with advanced PC even in their bones who are still thriving. The last time I talked to one good friend who had it in his bones when it was discovered years ago, he had just asked his Dr. what if it started getting worse. His Dr told him that he had some more tricks up his sleeve and not to worry. There's stuff out there that we don't know about.
That's why I don't mind sharing my experiences on this site which consists of mostly men. Men need to know about this cancer just as women need to know about breast cancer.
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- Feb 22, 2021
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- 1,631
I hope everything works out for you.
Medical/ health issues are stressful.
Medical/ health issues are stressful.
Thank you!
Except for when I was in the 4th grade, this is my first health crisis in almost 60 years.
I never knew what other people go through until now, funny how the brain works. I think my wife and I are now through the "stress" part. Being we got through all the doctor appointments and WOW we made a lot of appointments and arrangements with specialists to make what we feel is my best option for me.
SO that is all done, decision is made, so I am actually thrilled at starting treatment. I guess it's a survival mode. I just want to attack this and live, hopefully come out of it with the least possible life long side effects of which I am sure I will have some.
Anyway, Im repeating myself, no longer stressed, Ive been addressing a course of treatment since the end of Sept 2024 and that trip have been VERY STRESSFUL. Im THRILLED now to get started. Im on the drug Orgovyx and on the schedule to start radiation on Feb 10th. This gives the drug time to shrink the gland as much as possible for radiation. The smaller it is, helps narrow the beam to avoid as much as possible your other organs.
It will run for just over five weeks and I just learned yesterday that I will need to prepare for it each and everyday.
I will need to drink 32 ounces of water before arriving to get my bladder as full as possible, told it helps to push the small intestine out of the way and limit radiation exposure to it. It's also best if nothing in your bowels.
I know, in the back of my mind sooner or later reality will come back to me, but right now. I want to be treated and the stress of the decisions to how to treat it, where to go and the emotional aspect drained out of me are gone.
Thanks again.
No scan can be considered perfect but its a heck of a good thing that the PSMA Pet Scan Dec 2024 did not show any cancer spread/
and last weeks results Jan 2025 from an MRI confirm the same. This MRI was done to merge the CT scan for the programming of my radiation treatments, also inserted the month of Jan 2025 by needles was three gold balls into the gland to help the machine aim and focus the radiation as I am told. Radiation starting second week of Feb 2025 and will run for 28 treatments.
TO maintain privacy these are clips from last weeks MRI but some details left out
1. IMPRESSION: PROSTATE CANCER WITHOUT SUSPICIOUS LYMPHADENOPATHY OR BONE LESION ON NONCONTRAST EXAM.
2. COMPARISON: PET/CT 12/2024 TECHNIQUE: Multisequence and multiplanar magnetic resonance imaging of the pelvis was performed without intravenous contrast with prostate cancer protocol.
3.Peripheral zone: Prostate cancer without a dominant lesion.
-Central gland: Demonstrates findings of benign prosthetic hyperplasia. Prostate capsule: The prostatic capsule is intact.
-Neurovascular bundles: The neurovascular bundles are maintained.
-Seminal vesicles: The seminal vesicles are symmetric in size and signal characteristics.
-Lymph nodes: No suspicious lymph nodes identified in the pelvis.
-Osseous structures: No suspicious osseous lesions.
I cant ask for more other than to not have cancer. PSMA PET SCAN from the previous month, considered the gold standard right now also show no spread.
and ... why thoughout these pages I say to be proactive, catch it early, dont be afraid of your doctor and encourage tests if your doctor feels that is appropriate. I dont want to jinx myself because no one is guaranteed with cancer. But text book says odds are in my favor, now that I am being treated as a Grade 3A cancer. Not great but the best of Grade 3... unchallenged, well you could look that up yourself. But I read untreated over time jsut over 30% survival rate.
I also did a free DNA gene test through a prostate cancer group. My cancer is not the result in the genes they tested which I would think is another positive.
PS. 2 weeks now into a 6 month regimen of hormone blocking Orgovyx. Side effects for me (and they can vary greatly for everyone) are pretty frequent hot flashes and sweats. You kind of get used to it, they come and go rapidly, Im really ok with it since I am in a battle with cancer ... also as posted, interest in sex is zero for the first time in my life since around elementary school *LOL* Good news with this 6 month daily pill, once I stop I have been told by multiple doctors testosterone ramps back up rapidly once I am done. Either way, I want to live, so it is what it is. Helps to have a great wife who wants to you live too!
and last weeks results Jan 2025 from an MRI confirm the same. This MRI was done to merge the CT scan for the programming of my radiation treatments, also inserted the month of Jan 2025 by needles was three gold balls into the gland to help the machine aim and focus the radiation as I am told. Radiation starting second week of Feb 2025 and will run for 28 treatments.
TO maintain privacy these are clips from last weeks MRI but some details left out
1. IMPRESSION: PROSTATE CANCER WITHOUT SUSPICIOUS LYMPHADENOPATHY OR BONE LESION ON NONCONTRAST EXAM.
2. COMPARISON: PET/CT 12/2024 TECHNIQUE: Multisequence and multiplanar magnetic resonance imaging of the pelvis was performed without intravenous contrast with prostate cancer protocol.
3.Peripheral zone: Prostate cancer without a dominant lesion.
-Central gland: Demonstrates findings of benign prosthetic hyperplasia. Prostate capsule: The prostatic capsule is intact.
-Neurovascular bundles: The neurovascular bundles are maintained.
-Seminal vesicles: The seminal vesicles are symmetric in size and signal characteristics.
-Lymph nodes: No suspicious lymph nodes identified in the pelvis.
-Osseous structures: No suspicious osseous lesions.
I cant ask for more other than to not have cancer. PSMA PET SCAN from the previous month, considered the gold standard right now also show no spread.
and ... why thoughout these pages I say to be proactive, catch it early, dont be afraid of your doctor and encourage tests if your doctor feels that is appropriate. I dont want to jinx myself because no one is guaranteed with cancer. But text book says odds are in my favor, now that I am being treated as a Grade 3A cancer. Not great but the best of Grade 3... unchallenged, well you could look that up yourself. But I read untreated over time jsut over 30% survival rate.
I also did a free DNA gene test through a prostate cancer group. My cancer is not the result in the genes they tested which I would think is another positive.
PS. 2 weeks now into a 6 month regimen of hormone blocking Orgovyx. Side effects for me (and they can vary greatly for everyone) are pretty frequent hot flashes and sweats. You kind of get used to it, they come and go rapidly, Im really ok with it since I am in a battle with cancer ... also as posted, interest in sex is zero for the first time in my life since around elementary school *LOL* Good news with this 6 month daily pill, once I stop I have been told by multiple doctors testosterone ramps back up rapidly once I am done. Either way, I want to live, so it is what it is. Helps to have a great wife who wants to you live too!
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Here is a small update as far as Medicare Part D drug coverage. For those that do not know, Part D drug coverage is private insurance/ and something everyone should have if they choose a Medigap policy over a Medicare Advantage C Plan (as long as you choose an Advantage C plan with drug coverage).
My drug plan is paying $19,888.96 for me over the six month period @ $3,314.00 a month for my daily pill. It's really sweet to be able to get this newest potent pill to help treat my cancer, it's not too bad but not exactly a picnic taking it. I'll be glad when 6 months is up. Radiation starts next week!
My drug plan is paying $19,888.96 for me over the six month period @ $3,314.00 a month for my daily pill. It's really sweet to be able to get this newest potent pill to help treat my cancer, it's not too bad but not exactly a picnic taking it. I'll be glad when 6 months is up. Radiation starts next week!
Started Radiation Therapy yesterday. Super NICE staff, amazing. walked me through the center, also got to see the tech section briefly where the technicians operate the equipment from their console.
Brought me in the room, explained in super detail everything that was to take place. Since this was the first day of the next 5.5 weeks this one session was to be longer. The machine did another CT scan and I forgot what else it was doing. They then said they are leaving the room and wont be back until completed and if any issues let them know. I saw a camera facing me and I assume a mic someplace. They also said the first session is longer in order to configure for my treatments. The rest will be much faster.
Anyway for what seemed a while, the machine turned on and off rotated around my body as I lay on the table. Many pauses then would start up again.
Once I thought I MIGHT be done, through the speaker in the room they told me the one time configuration was done and now need my doctor to approve it. That it would be a little while and once he does approve it, the treatment will start.
Well let me tell you, I was slowly getting in a panic as I had to drink 32 ounces of water before I arrived and hold it. *LOL* I was starting to get concerned how much longer! (later as I was leaving I told them and they said I can adjust what I drink)
Anyway, a while later the machine started up again. Being I LOVE electronics I thought it was REALLY cool watching this thing and its solid panels and also a large round glass one, with laser rotating around my body doing its thing. You feel nothing at all, nothing while they technically are *LOL* microwaving an organ in your body is the way I see it.
Anyway, 1 treatment down, 27 more to go. No weekends and as strange as it sounds, no treatment on Valentines Day this Friday.
This is the treatment however this is just a resource and general overview, your treatment and prep will be dictated by your doctor. I dont have to do all the prep stuff in the article except drink water and they say to try to relieve your bowel before going there. You can also time it for time of day on when you schedule.
https://www.mskcc.org/cancer-care/patient-education/intensity-modulated-radiation-therapy-prostate
Because of my cancer stage as previously posted its the best of Stage 3 which is great but I am being treated as Stage 3 which there are worse stages. This is the key to early detection. GO to YOUR Doctor and ask questions, do not put off suggested tests. IT worked well for me. I think I will be considered cured but cancer sucks and I guess you never know but anyway. Because of my rating
I am also under Hormone Drug therapy with ORGOVYX (easy to look up on your own and ask your doctor) I am just finishing my first month of 6 months. Five more to go. It's not exactly a blast of fun. I get hot flashes quite frequently. Im getting used to it though. Focus on the end result is what I do and I am THRILLED to be on this newer more effective drug for my situation. Bottom line is, I am glad they are throwing everything they can at it for its rating.
First month done 5 more to go, time goes fast!
Brought me in the room, explained in super detail everything that was to take place. Since this was the first day of the next 5.5 weeks this one session was to be longer. The machine did another CT scan and I forgot what else it was doing. They then said they are leaving the room and wont be back until completed and if any issues let them know. I saw a camera facing me and I assume a mic someplace. They also said the first session is longer in order to configure for my treatments. The rest will be much faster.
Anyway for what seemed a while, the machine turned on and off rotated around my body as I lay on the table. Many pauses then would start up again.
Once I thought I MIGHT be done, through the speaker in the room they told me the one time configuration was done and now need my doctor to approve it. That it would be a little while and once he does approve it, the treatment will start.
Well let me tell you, I was slowly getting in a panic as I had to drink 32 ounces of water before I arrived and hold it. *LOL* I was starting to get concerned how much longer! (later as I was leaving I told them and they said I can adjust what I drink)
Anyway, a while later the machine started up again. Being I LOVE electronics I thought it was REALLY cool watching this thing and its solid panels and also a large round glass one, with laser rotating around my body doing its thing. You feel nothing at all, nothing while they technically are *LOL* microwaving an organ in your body is the way I see it.
Anyway, 1 treatment down, 27 more to go. No weekends and as strange as it sounds, no treatment on Valentines Day this Friday.
This is the treatment however this is just a resource and general overview, your treatment and prep will be dictated by your doctor. I dont have to do all the prep stuff in the article except drink water and they say to try to relieve your bowel before going there. You can also time it for time of day on when you schedule.
https://www.mskcc.org/cancer-care/patient-education/intensity-modulated-radiation-therapy-prostate
Because of my cancer stage as previously posted its the best of Stage 3 which is great but I am being treated as Stage 3 which there are worse stages. This is the key to early detection. GO to YOUR Doctor and ask questions, do not put off suggested tests. IT worked well for me. I think I will be considered cured but cancer sucks and I guess you never know but anyway. Because of my rating
First month done 5 more to go, time goes fast!
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Ok, 7 of 28 radiation treatments done as of today 02/19/2025
Im fascinated by the machine, the whole procedure takes maybe 8 minutes tops after they lay you on the table.
Different types of cancer will have different scenarios and dosage method I would think.
For me, prostate cancer.
1. The team lays you on the table, puts a blanket over you and you pull your pants down to just above your knees.
2. They line up the lasers with marks they initailly placed on the sides of your hips.
3. They slide the table under the machine, under the machine the table raises up, the table is a piece of the equipment, quite advanced. (read on) it raises you up to approx 10 to 12 inches below the round disc on the top. The disc has different lights and lasers and a large glass panel.
4. The team says goodbye and leaves the room. Literally as they are leaving the room, the crew in another tech room behind computer consoles start the machine up. There is a speaker in the room and camera watching you.
5. The ENTIRE MACHINE, FROM FLOOR TO CEILING starts to rotate. IN the photo you can see two panels one on the left and one on the right. They unfold completely and pretty much cover each side of your body. For (at least prostate) the entire machine, all three panels slowly spin 180 degrees and stop, then, another slow 180 degrees back. 360 degrees in all. I believe this is the imaging part (CT)
(at this point there is a couple minute pause)
I believe this is where they merge the current CT scan image with the MRI imaging done as the reference before the scheduling my treatments the previous month. There are also now, 3 tiny gold balls previously inserted into the prostate that stay there forever. They insure precision as best possible for the radiation beam to concentrate on the prostate and avoid as best possible your other organs. I think of it like a fine focus onto the dots of the gold balls and merged with a previous MRI image of them.
During this pause, you can tell when you are 100% aligned as the table itself, will make incredible fine adjustments of what seems like 10ths of an inch in all directions with quick jerks.
Once that is done.
6. Those side panels are now in the retracted position (like in the current photo) and that disc at the top I assume in the "radiator"
It does a 180 degree spin, floor to ceiling. Once under you, another pause and then what I think sounds like the machine energizing, another pause and with a low distinct "buzz" sound (soothing too) it then rotates around your body 360 degrees back to under you again.
7. It pauses and then once again, energizes and with a low soothing "buzz" rotates 360 degrees back under you. Once back under, buzzing stops and you know you are done, slowly it rotates back to the upright position (as shown in the photo) and the team is coming back in to get up up from the table and you are done.
I would say, the entire procedure, maybe you are in the room for 8 minutes. The thing is, with the prostate you need to have a full bladder, so you drink 32 ounces of water about 30 minutes before you get there. It can be challenging but you learn quickly how to mange it. The reason for the water I am told is the full bladder pushes your lower intestine out of the way. They actually will know if you drank water ahead of time as it will show up in the initial part of the CT scan (right after step 5). and if not enough they will get you up and take the next person while you drink more water. I haven't had that issue but there was one guy who did.
21 more treatments to go. I THINK I am starting to feel some irritation and from what they tell me, it can also irritate your bladder and I find myself getting up at night more frequently to use the bathroom even if I dont have to go much.
Im still amazed at the machine, its wild and the team is great (I think most all are) since you go there every weekday they get to know your name and treat you like a human being, really nice people.
I asked if I could take a photo, I told them I feel funny asking and with a smile they told me I would be surprised how many people do the same. This is my girl! To the right and left are the panels that extend to the sides of your body I THINK the panels at the imagining part, the disc at the top is also approximately 10 to 12 inches from your body. I am almost positive the disc is the radiation part of the machine.
Photo doesnt do it justice. It's really much larger than it looks. as just look how close it is to the ceiling and that entire machine rotates around you.
Moral of my stories are, if you suspect something go to your doctor, you can do this. Also be your own advocate and get more doctor opinions.
This is a video on the general operation of the machine, not related to prostate cancer.
Starts at about the 1:30 min mark
Im fascinated by the machine, the whole procedure takes maybe 8 minutes tops after they lay you on the table.
Different types of cancer will have different scenarios and dosage method I would think.
For me, prostate cancer.
1. The team lays you on the table, puts a blanket over you and you pull your pants down to just above your knees.
2. They line up the lasers with marks they initailly placed on the sides of your hips.
3. They slide the table under the machine, under the machine the table raises up, the table is a piece of the equipment, quite advanced. (read on) it raises you up to approx 10 to 12 inches below the round disc on the top. The disc has different lights and lasers and a large glass panel.
4. The team says goodbye and leaves the room. Literally as they are leaving the room, the crew in another tech room behind computer consoles start the machine up. There is a speaker in the room and camera watching you.
5. The ENTIRE MACHINE, FROM FLOOR TO CEILING starts to rotate. IN the photo you can see two panels one on the left and one on the right. They unfold completely and pretty much cover each side of your body. For (at least prostate) the entire machine, all three panels slowly spin 180 degrees and stop, then, another slow 180 degrees back. 360 degrees in all. I believe this is the imaging part (CT)
(at this point there is a couple minute pause)
I believe this is where they merge the current CT scan image with the MRI imaging done as the reference before the scheduling my treatments the previous month. There are also now, 3 tiny gold balls previously inserted into the prostate that stay there forever. They insure precision as best possible for the radiation beam to concentrate on the prostate and avoid as best possible your other organs. I think of it like a fine focus onto the dots of the gold balls and merged with a previous MRI image of them.
During this pause, you can tell when you are 100% aligned as the table itself, will make incredible fine adjustments of what seems like 10ths of an inch in all directions with quick jerks.
Once that is done.
6. Those side panels are now in the retracted position (like in the current photo) and that disc at the top I assume in the "radiator"
It does a 180 degree spin, floor to ceiling. Once under you, another pause and then what I think sounds like the machine energizing, another pause and with a low distinct "buzz" sound (soothing too) it then rotates around your body 360 degrees back to under you again.
7. It pauses and then once again, energizes and with a low soothing "buzz" rotates 360 degrees back under you. Once back under, buzzing stops and you know you are done, slowly it rotates back to the upright position (as shown in the photo) and the team is coming back in to get up up from the table and you are done.
I would say, the entire procedure, maybe you are in the room for 8 minutes. The thing is, with the prostate you need to have a full bladder, so you drink 32 ounces of water about 30 minutes before you get there. It can be challenging but you learn quickly how to mange it. The reason for the water I am told is the full bladder pushes your lower intestine out of the way. They actually will know if you drank water ahead of time as it will show up in the initial part of the CT scan (right after step 5). and if not enough they will get you up and take the next person while you drink more water. I haven't had that issue but there was one guy who did.
21 more treatments to go. I THINK I am starting to feel some irritation and from what they tell me, it can also irritate your bladder and I find myself getting up at night more frequently to use the bathroom even if I dont have to go much.
Im still amazed at the machine, its wild and the team is great (I think most all are) since you go there every weekday they get to know your name and treat you like a human being, really nice people.
I asked if I could take a photo, I told them I feel funny asking and with a smile they told me I would be surprised how many people do the same. This is my girl! To the right and left are the panels that extend to the sides of your body I THINK the panels at the imagining part, the disc at the top is also approximately 10 to 12 inches from your body. I am almost positive the disc is the radiation part of the machine.
Photo doesnt do it justice. It's really much larger than it looks. as just look how close it is to the ceiling and that entire machine rotates around you.
Moral of my stories are, if you suspect something go to your doctor, you can do this. Also be your own advocate and get more doctor opinions.
This is a video on the general operation of the machine, not related to prostate cancer.
Starts at about the 1:30 min mark
Last edited:
4WD
$50 site donor 2025
Been under Varian machines - it’s an odd feeling - side effects were tough - but lived to see many many good days … All the best …
Im curious, did you have a 28 day treatment for prostate cancer? I know the treatments used to be longer is why I am asking. Also no one size fits all.
Anyway, back to curious, you mentioned side effects. Im only 8 days into the 28 days and am noticing some changes. The worst was waking up almost every hour of the day night to go to the bathroom when you really dont have to go much. I was told the bladder gets irritated from the radiation. Before treatment I stopped taking the Finasteride as I was told by one specialist it's not needed since the ORGOVYX also shrinks the gland.
Anyway, in my weekly follow up to the radiation treatments I told this specialist about getting up every hour while I sleep and he asked me why I stopped taking it. I replied that I didnt want someone to miscalculate my PSA scores when I am done with treatments. Finasteride artificially lowers PSA levels up to 50% and my regular urologist messed up on this (in my opinion) or I would have got treatment sooner.
My cancer is now categorized as Grade 3A because of the high score of 23 but my Dr at the time was only seeing 11.5 and I insisted on a Biopsy 6 months previous my PSA was around 9 and I wanted a biopsy then, he suggested waiting 6 months which I did, what did I know at the time? I had 3 negative biopsies from 2017 to 2021 so figured 6 months would hurt. Glad I didnt let him talk me into another 6 months.
Anyway the radiation oncologist said they prescribe Finasteride for men getting radiation who have this issue. So he suggested I go back to taking it for a week and see if it makes a difference. After two days, I think it has. That sounds suspicious so quickly to me, so Im not convinced yet. All I know is I had a good nights sleep last night.
Ok, back to curious, I could swear sometimes I feel the radiation hit the nerves in there as I am being treated and/or sometimes feel it for a couple hours after. It's not bad (yet) at all, it's just there. I know it's the nerves because the feeling is the same during a biopsy or when the gold markers were put in which was brutal at the time. Anyway, this is NOTHING close to that level of pain, it's just a low level reminder that I suspect is the same nerves being affected, actually I am positive. If you know what I mean, then you definitely know that is an unmistakable nerve area.
Anyway, not to repeat myself which I do all the time in here but glad you lived to see many good days.
4WD
$50 site donor 2025
Head and neck - twice - 4-5 weeks …
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