Prostate Cancer Support Groups: ancan.org/prostate-cancer/ zerocancer.org/help-and-support/find-support-group healthunlocked.com/advanced-prostate-cancer
I live in Florida in a rural area with a bad Medicare advantage plan. I have limited resources and hospitals and doctors. I have always been in good health but am 68 with a PSA rising every month to 16.5. Through listening to your videos, I learned I should have, and did have an MRI, which showed a lesion and other suspicious areas. I had the biopsy and was just diagnosed with Gleason 9 prostate cancer. I have a PSMA pet scan to check any spread scheduled next week, so my nightmare has begun. i live alone with two old dogs, but If I ever win the Florida lotto, I promise I will donate a portion to your cause. I have been watching these videos for the past year, and you are my support group and I have educated myself and learned so much through you. Thank you.
I would recommend switching to a better Medicare advantage plan such as Aetna premier plus medical advantage. It's national wide so you can go anywhere in the USA. Good luck
The best advice is divorce from the "Standard American Diet" and have a personal trainer 2 or 3 times a week. The Medical establishment is not set up to consult on "Wellness"; Dr. Scholtz and Dr. Moyad preach wellness.
Presently I am going thru radiation treatment and hormonal treatment for my metastatic cancer at the Dattoli Cancer Center in Sarasota. In addition to these treatments I am taking a drug called Erleada that suppose to work on cancer receptors. It is my second time that cancer came back after initial treatment. My previous treatment was three years ago and I had five lymph nodes radiated. My PSA before this treatment was 1.45 and PET scan reveal that I have 6 spots with cancer on 4 ribs and probably on 1 lymph node under my left armpit. After 3 weeks of treatment and only half of my cancer spots treated my PSA went down to 0.074. Doctor Dattoli is telling me that this time he will cure me. I feel great and physically very active, greeting.
so great to hear, very glad for you. how are things going now? are you doing ok on hormone therapy? my dad is facing possibly taking them and im scared for him, so many people report horrific side effects from hormones, is that the case for most people?
This is what happened with my father in the early 1980s. His prostate cancer spread to his bones & pretty much got into every bone according to the doctors. He quit treatment as he was a pharmacist he pretty much knew what the results would be. His last couple of months were terrible.
Thanks for your videos I have been treated for Gleason 8 for 4 years after all the treatments I just finished Pluvicto and finally in remission hoping to stay that way. It’s been a long journey and with all the metastasis never have been in pain but thanks for the info in case I do I will know what to do. Good luck to everyone here’s to being undetectable and living long.
That’s great Tom! I was diagnosed with Gleason 8 a couple of months ago , as we “speak” I’m going to have a PSMA PET scan be done to see if any metastasis has occurred. I would like to to keep our conversation and perhaps pick your brain on your recovery process. Thanks for sharing. Cheers!
🎯 Key points for quick navigation: 00:00:14 *🦴 Prostate cancer that metastasizes to the bones is concerning, but modern imaging and medicine provide multiple treatment options.* 00:01:11 *🔬 Prostate cancer's preference for spreading to lymph nodes and bones is still under research, unlike other cancers that spread more widely.* 00:02:19 *🩸 Uncontrolled bone metastases in prostate cancer can lead to serious complications like anemia, infections, and bleeding due to bone marrow malfunction.* 00:03:00 *🌍 Liver or lung metastases in prostate cancer are rare, occurring in less than 5% of known bone metastasis cases.* 00:03:55 *😌 Modern detection typically finds bone metastases before they become painful, contrasting with past instances of more advanced disease.* 00:05:17 *💡 Effective prostate cancer treatment, including spot radiation, can rapidly relieve bone pain associated with metastases.* 00:06:36 *🎯 Modern high-dose beam radiation aims to sterilize metastatic lesions rather than merely relieve pain, marking a shift from past practices.* 00:08:29 *🧠 Advancements in precision allow for safe radiation treatment near the spinal cord, minimizing risks of spinal cord damage.* 00:09:50 *🚨 Emergency intervention is crucial for spinal cord compression symptoms to prevent permanent damage, a rare but serious prostate cancer complication.* 00:11:25 *🔬 PSMA PET scans enhance detection of early-stage metastatic disease, shifting treatment approach from reliant on older, less precise scans.* 00:14:27 *⏳ PSA levels may decline slowly after radiation treatment without simultaneous hormone therapy, requiring patient patience for full assessment.* 00:17:14 *🩺 Seek multiple opinions for treatment planning and be an advocate for your needs and concerns with your medical team.* 00:18:51 *🤝 Support groups provide camaraderie and help metastatic patients learn about treatments and manage side effects.* 00:19:47 *❤️ Emphasizing mental health and quality of life is crucial; support and resources are available for those dealing with prostate cancer.* Made with HARPA AI
Just a simple question, how many Greys of radiation are generally used to "kill" an oligometastatic bone lesion (as opposed to just pain reduction of it)?
For what it's worth, Glasgow University is adding Mebendazole iirc, to Docetaxel and City of Hope, (AOH1996 fame) is adding Ivermectin to TNBC treatment. Ask yourself why.
I appreciate all your videos, especially this one. I do have a question about the last bit of info though. I think you said if you are “undetectable”, under .1, and a PSMA PET Scan shows a couple of hot spots, to go ahead and get them radiated. I’m not questioning this course of action, but if a person has been undetectable for 20 months (like me at 0.09) my oncologist says I don’t meet the standards for a PSMA PET Scan. Is the only way to get a scan is to have specific bone pain?
I am in almost the exact same situation. I was diagnosed a little over a year ago and had a PSMA PET Scan that showed metastasis in several spots on my pelvis and tailbone. My initial treatment plan involved radiation to my prostate and one lymph node which I completed 6 months ago. My radiation oncologist wanted to wait after that sesion for 6 months before he treated my bone mets in order to let the tissue around my prostate heal and to prevent damage to my colon from too much radiation. My oncologist ordered a bone scan recently and that showed that most of the mets had decreased significantly in size as a result of my ADT therapy (Eligard, Abiraterone, prednisone). Before I start the second round of radiation my radiology oncologist wanted to order another PSMA PET Scan, even though my PSA is less than .06 (and has been since I started ADT). His reasoning is that it has been a year since my last scan and he wanted to fine tune his radiation targets on my pelvis and tailbone with the new scan. He ordered the scan and it was approved and I am scheduled to have it in about a week and a half after which they will schedule the additional radiation.I thought that maybe I wouldn't qualify for the additional PET scan because of my undetectable PSA but he said because they know I have metastatic disease he could get it approved.
Hi again ..thanks ..very helpful. I have recurring cancer. Prostate removed 8 years ago. Psa now 0.38. Just had psma pet scan ..no local cancer found.so 2nd scan booked in Aug to look at bones.. quick question if no cancer found .. how can it have maybe spread to bones ?.. maybe I'm being dim. . But cancer spreads no jumps ??.. many thanks for reading
@@martinstenner6715, I guess “spread” is the wrong word to use here, although every urologist and oncologist use it all the time. “Jump” is more descriptive. There will be no visible pathway from the original tumor to the bones. I guess you can say vacationers spread across the country via the road system, and end up at the place they were heading to. In the same sense, tumor cells spread across the body until it finds a suitable place to stick, using the Blood highway and maybe the lymph nodes highway. BTW, I had a PSMA PET Scan yesterday. I’ll meet up with my oncologist Friday to go over the results. I started with a PSA of 1,300 29 months ago with mets on every vertebra and some ribs, and meds took it to 0.09 in about 3 months. It stayed that way till the end of June when it doubled to 0.18 which is why I had another PSMA PET Scan. Hope this helps. Fight on.
@@martinstenner6715 I was pretty sure I replied yesterday but don’t see it. Think about people, vacationers, traveling the highways from one place to another. All these people are ‘spreading’ across the country to make it to their destinations. Kinda like your Prostate Cancer uses the ‘highways’ in your body to make it to its new destinations. Your highways are your blood and lymph systems.
When I was going through chemo (jevtana) I started to develop pain in my right hip (lower part and upper part). My oncologist noted I did have some hot spots in my hip based on a previous PSA PET scan. He sent me to a radiologist-oncologist that radiated (just one session) of my right hip. Within five days all the pain was completely gone. Since I was on chemo I expected my PSA to immediately drop, but conversely my PSA ticked up some. At that point my oncologist (since I was eligible) sent me to a nuclear doctor that put me on Pluvico treatment (lutetium-177). I recently finished up my six 6-week cycles of Pluvicto. I'm disappointed as my PSA was 0.22 four weeks after my last Pluvicto cycle. At the conclusion of my last Pluvicto cycle my oncologist put me on Xtandi -- in addition to the Lupron I've been on for five years. I don't know where we will go from here if my PSA starts to rise.
I’m on Xtandi and Lupron. Started at a PSA of 1,300 and Gleason score of 4+5=9. It took about 4 months to bring my PSA down to 0.09. It has been stable there for the past 20 months. Oh, and Mets all up my spine, several ribs, and Lymph nodes. YMMV
@@bobliening5783 Prior to any chemo I wa s on lupron or eligard. When my PSA started rise my urologist put me on erleada. That brought my PSA down to undetectable for about a year, then it started to slowly rise again. It was then I went through chemo and pluvicto. I'm on xtandi now because I'm also on blood thinner, and my oncologist said there would be some kind of negative interaction with erleada and xarelto (blood thinner).
Prostate Cancer Support Groups:
ancan.org/prostate-cancer/
zerocancer.org/help-and-support/find-support-group
healthunlocked.com/advanced-prostate-cancer
I live in Florida in a rural area with a bad Medicare advantage plan. I have limited resources and hospitals and doctors. I have always been in good health but am 68 with a PSA rising every month to 16.5. Through listening to your videos, I learned I should have, and did have an MRI, which showed a lesion and other suspicious areas. I had the biopsy and was just diagnosed with Gleason 9 prostate cancer. I have a PSMA pet scan to check any spread scheduled next week, so my nightmare has begun. i live alone with two old dogs, but If I ever win the Florida lotto, I promise I will donate a portion to your cause. I have been watching these videos for the past year, and you are my support group and I have educated myself and learned so much through you. Thank you.
I would recommend switching to a better Medicare advantage plan such as Aetna premier plus medical advantage. It's national wide so you can go anywhere in the USA. Good luck
The best advice is divorce from the "Standard American Diet" and have a personal trainer 2 or 3 times a week. The Medical establishment is not set up to consult on "Wellness"; Dr. Scholtz and Dr. Moyad preach wellness.
im so sorry, how are you doing now? have you done the pet scan?
Agree - Team Schulz is TOPS!
Alex, simply you are the best presenter who knows how to sooth the pain of some one who has problems with prostate disease. 🌹
Presently I am going thru radiation treatment and hormonal treatment for my metastatic cancer at the Dattoli Cancer Center in Sarasota. In addition to these treatments I am taking a drug called Erleada that suppose to work on cancer receptors. It is my second time that cancer came back after initial treatment. My previous treatment was three years ago and I had five lymph nodes radiated. My PSA before this treatment was 1.45 and PET scan reveal that I have 6 spots with cancer on 4 ribs and probably on 1 lymph node under my left armpit. After 3 weeks of treatment and only half of my cancer spots treated my PSA went down to 0.074. Doctor Dattoli is telling me that this time he will cure me. I feel great and physically very active, greeting.
So happy to hear a positive story!!!!
I was told by my dr that life span is 20 months
@stanleymoore8084 So your doctor's surname must be "god", very unprofessional prognosis~
@@andrewkosalka3843 hey can i know from where you are being treated
so great to hear, very glad for you. how are things going now? are you doing ok on hormone therapy? my dad is facing possibly taking them and im scared for him, so many people report horrific side effects from hormones, is that the case for most people?
you guys are the best !!!!!! I have the notification on. I watch every single video as soon as you upload them on youtube :)
This is what happened with my father in the early 1980s. His prostate cancer spread to his bones & pretty much got into every bone according to the doctors. He quit treatment as he was a pharmacist he pretty much knew what the results would be. His last couple of months were terrible.
How many years he survived?
I regularly participate in two online support groups, and it has proven to be helpful and comforting and even entertaining. Recommended.
Could you share this info? My FIL was just diagnosed
@@alannahurst3894 Both are Facebook groups. Prostate Cancer Warriors is one. The other is The PC Tribe.
Thank you so much for this series of videos. We highly appreciate them.
Thanks for the video on this topic.
Thanks for your videos I have been treated for Gleason 8 for 4 years after all the treatments I just finished Pluvicto and finally in remission hoping to stay that way. It’s been a long journey and with all the metastasis never have been in pain but thanks for the info in case I do I will know what to do. Good luck to everyone here’s to being undetectable and living long.
That’s great Tom! I was diagnosed with
Gleason 8 a couple of months ago
, as we “speak” I’m going to have a PSMA PET scan be done to see if any metastasis has occurred. I would like to
to keep our conversation and perhaps pick your brain on your recovery process. Thanks for sharing. Cheers!
Thank you.
Sir! Always encouraging!
invaluable information thank you
My PSA was undetectable for almost 2 years i am now at 1.18 i just got my PSA Pet today.
Please reach out to Helpline if you need information or help: pcri.org/helpline
Do you have any discussions on St 4 cancer with bone mets for elderly (80+); prognosis, approach, etc.?
Thank you both for this priceless info!
Advanced #ProstateCancer Treatments | Eugene Kwon, MD:
ruclips.net/video/-RVVq0uDAEE/видео.html
🎯 Key points for quick navigation:
00:00:14 *🦴 Prostate cancer that metastasizes to the bones is concerning, but modern imaging and medicine provide multiple treatment options.*
00:01:11 *🔬 Prostate cancer's preference for spreading to lymph nodes and bones is still under research, unlike other cancers that spread more widely.*
00:02:19 *🩸 Uncontrolled bone metastases in prostate cancer can lead to serious complications like anemia, infections, and bleeding due to bone marrow malfunction.*
00:03:00 *🌍 Liver or lung metastases in prostate cancer are rare, occurring in less than 5% of known bone metastasis cases.*
00:03:55 *😌 Modern detection typically finds bone metastases before they become painful, contrasting with past instances of more advanced disease.*
00:05:17 *💡 Effective prostate cancer treatment, including spot radiation, can rapidly relieve bone pain associated with metastases.*
00:06:36 *🎯 Modern high-dose beam radiation aims to sterilize metastatic lesions rather than merely relieve pain, marking a shift from past practices.*
00:08:29 *🧠 Advancements in precision allow for safe radiation treatment near the spinal cord, minimizing risks of spinal cord damage.*
00:09:50 *🚨 Emergency intervention is crucial for spinal cord compression symptoms to prevent permanent damage, a rare but serious prostate cancer complication.*
00:11:25 *🔬 PSMA PET scans enhance detection of early-stage metastatic disease, shifting treatment approach from reliant on older, less precise scans.*
00:14:27 *⏳ PSA levels may decline slowly after radiation treatment without simultaneous hormone therapy, requiring patient patience for full assessment.*
00:17:14 *🩺 Seek multiple opinions for treatment planning and be an advocate for your needs and concerns with your medical team.*
00:18:51 *🤝 Support groups provide camaraderie and help metastatic patients learn about treatments and manage side effects.*
00:19:47 *❤️ Emphasizing mental health and quality of life is crucial; support and resources are available for those dealing with prostate cancer.*
Made with HARPA AI
Thanks
Thank you.
God bless
Thanks PCRI!
Greatly appreciate your videos.
Just a simple question, how many Greys of radiation are generally used to "kill" an oligometastatic bone lesion (as opposed to just pain reduction of it)?
For what it's worth, Glasgow University is adding Mebendazole iirc, to Docetaxel and City of Hope, (AOH1996 fame) is adding Ivermectin to TNBC treatment. Ask yourself why.
@@DCGreenZone what dose of ivermectin they use? And how?
@@vera821 Do you know what substack is
@@vera821 Reason I ask, is it involves more than just the anti parasitics.
I appreciate all your videos, especially this one. I do have a question about the last bit of info though. I think you said if you are “undetectable”, under .1, and a PSMA PET Scan shows a couple of hot spots, to go ahead and get them radiated. I’m not questioning this course of action, but if a person has been undetectable for 20 months (like me at 0.09) my oncologist says I don’t meet the standards for a PSMA PET Scan. Is the only way to get a scan is to have specific bone pain?
I am in almost the exact same situation. I was diagnosed a little over a year ago and had a PSMA PET Scan that showed metastasis in several spots on my pelvis and tailbone. My initial treatment plan involved radiation to my prostate and one lymph node which I completed 6 months ago. My radiation oncologist wanted to wait after that sesion for 6 months before he treated my bone mets in order to let the tissue around my prostate heal and to prevent damage to my colon from too much radiation. My oncologist ordered a bone scan recently and that showed that most of the mets had decreased significantly in size as a result of my ADT therapy (Eligard, Abiraterone, prednisone). Before I start the second round of radiation my radiology oncologist wanted to order another PSMA PET Scan, even though my PSA is less than .06 (and has been since I started ADT). His reasoning is that it has been a year since my last scan and he wanted to fine tune his radiation targets on my pelvis and tailbone with the new scan. He ordered the scan and it was approved and I am scheduled to have it in about a week and a half after which they will schedule the additional radiation.I thought that maybe I wouldn't qualify for the additional PET scan because of my undetectable PSA but he said because they know I have metastatic disease he could get it approved.
@@wjrothrock3 I’ve not had radiation, surgery, nor chemo. I would be interested in tour results.
Hi again ..thanks ..very helpful. I have recurring cancer. Prostate removed 8 years ago. Psa now 0.38.
Just had psma pet scan
..no local cancer found.so 2nd scan booked in Aug to look at bones.. quick question if no cancer found .. how can it have maybe spread to bones ?.. maybe I'm being dim. . But cancer spreads no jumps ??.. many thanks for reading
@@martinstenner6715, I guess “spread” is the wrong word to use here, although every urologist and oncologist use it all the time. “Jump” is more descriptive. There will be no visible pathway from the original tumor to the bones.
I guess you can say vacationers spread across the country via the road system, and end up at the place they were heading to. In the same sense, tumor cells spread across the body until it finds a suitable place to stick, using the Blood highway and maybe the lymph nodes highway.
BTW, I had a PSMA PET Scan yesterday. I’ll meet up with my oncologist Friday to go over the results. I started with a PSA of 1,300 29 months ago with mets on every vertebra and some ribs, and meds took it to 0.09 in about 3 months. It stayed that way till the end of June when it doubled to 0.18 which is why I had another PSMA PET Scan.
Hope this helps. Fight on.
@@martinstenner6715 I was pretty sure I replied yesterday but don’t see it. Think about people, vacationers, traveling the highways from one place to another. All these people are ‘spreading’ across the country to make it to their destinations. Kinda like your Prostate Cancer uses the ‘highways’ in your body to make it to its new destinations. Your highways are your blood and lymph systems.
Any news on AOH 1996 ?
If your bones are hurting, but you don’t have metastasis anywhere besides bones - that means you’re close to death?? Because the bones hurt??
I know I sound foolish so please forgive me. How do I subscribe to this channel?
There's a subscription button with a Bell icon, directly under the video... Click "Subscribe" until it changes to "Subscribed"..
What or where are the centers of excellence referred to here?
How many gray can sterilize a bone met?
Tail bone metastasis is painful
When I was going through chemo (jevtana) I started to develop pain in my right hip (lower part and upper part). My oncologist noted I did have some hot spots in my hip based on a previous PSA PET scan. He sent me to a radiologist-oncologist that radiated (just one session) of my right hip. Within five days all the pain was completely gone. Since I was on chemo I expected my PSA to immediately drop, but conversely my PSA ticked up some. At that point my oncologist (since I was eligible) sent me to a nuclear doctor that put me on Pluvico treatment (lutetium-177). I recently finished up my six 6-week cycles of Pluvicto. I'm disappointed as my PSA was 0.22 four weeks after my last Pluvicto cycle. At the conclusion of my last Pluvicto cycle my oncologist put me on Xtandi -- in addition to the Lupron I've been on for five years. I don't know where we will go from here if my PSA starts to rise.
You can get more pluvicto. I have seen it approved before. There is also an immunotherapy that particularly protects lymph nodes,I forget the name...
There is also IV vitamin C, melatonin/statin/aspirin and other alt treatments.
I’m on Xtandi and Lupron. Started at a PSA of 1,300 and Gleason score of 4+5=9. It took about 4 months to bring my PSA down to 0.09. It has been stable there for the past 20 months. Oh, and Mets all up my spine, several ribs, and Lymph nodes. YMMV
@@bobliening5783 Prior to any chemo I wa s on lupron or eligard. When my PSA started rise my urologist put me on erleada. That brought my PSA down to undetectable for about a year, then it started to slowly rise again. It was then I went through chemo and pluvicto. I'm on xtandi now because I'm also on blood thinner, and my oncologist said there would be some kind of negative interaction with erleada and xarelto (blood thinner).
@@bobliening5783Were you in pain? Since it was in your spine? My father also has metastatic cancer in bones at the moment.