That is so cool you played at your daughters wedding. My daughter's wedding was this past April and I hired a pianist and singer and my son and I played the guitar on the song she walked down the aisle. We played I see the light from Disney's Tangled. The pianist and his wife did the singing and vocal duet. It was amazing. Glad to hear you are playing again. For me, it took a long time for my chops to come back good enough to want to even try.
I was diagnosed De Novo high volume unfortunately, with a PSA of 28 and or 32.
"I was diagnosed De Novo high volume unfortunately, with a PSA of 28 and or 32."
Weirdly, my PSA was in the high 60s for my low-volume stage 4b (oligometastatic), which goes to show that PSA is a useful but imprecise indicator.
I think what matters is whether the PSA is undetectable (e.g. < 0.01), low (say, < 5) mid-range (say, around 10, plus or minus) or high (say >15 or 20).
The exact number isn't very predicative, though obviously it matters which direction it's moving.
Radium 223 is unfortunately only approved for Castrate Resistant Prostate Cancer. Same with Pluvicto. Although, I believe there is a study going on in Australia that is giving Pluvicto as an up front treatment with ADT and an ARSI instead of chemo.
For those of us with high volume bone mets, it is beyond me why insurance does not allow a short coarse of clean up treatment with Radium 223 to wipe out the bone mets.
Did Xtandi , Xofio or Radium 223 then 2 chemo for bone mets in T 5 and L1 and hip Chemo gave me fluid on lungs, and small embolism PSA shot up with PSA Flare to 180 40% get this
Now awaiting what's next Maybe LU 177 Had prostate radiated 2017 then L1 radiated 2020 Still going with PMA and feeling great at 80
advice on what's next for drugs appreciated Daralutimide??? or same as Xtandi?
My opinion is base on my personal 10 years of battling prostate cancer. Stick with hard and true scientific healthcare. Cancer research has been around for 300 years and the medical and science community have a lot of information, options and new discoveries to offer. Time is of the essence. If you want to pray, that's fine. But cancer has no religious affiliation or boundaries and, quite frankly, doesn't care if you do either. Get on with what you can do to postpone or beat this ugly disease.
My opinion is base on my personal 10 years of battling prostate cancer. Stick with hard and true scientific healthcare. Cancer research has been around for 300 years and the medical and science community have a lot of information, options and new discoveries to offer. Time is of the essence. If you want to pray, that's fine. But cancer has no religious affiliation or boundaries and, quite frankly, doesn't care if you do either. Get on with what you can do to postpone or beat this ugly disease.
For example, I eat well, stay active, get out of the house often, play music, garden, walk my grandpuppy, and maintain social contact: I don't expect any of those to replace my medical treatment, but they can be a great supplement, because a positive mood and lower stress strengthen my body's ability to tolerate my meds and fight the disease. For many people, religion does the same. That's not necessarily because a magical being is curing them (I'm not answering that question either way), but if it's a source of comfort, then go for it!
Or, to phrase it differently for people of faith, if your diety choses to answer your prayers by making modern medicine available to you, then it makes sense to embrace it. And if your faith and congregation are a source of support and comfort to you, then embrace them, too.
I had good results for two years with Orgovyx, until the PSA number reached 7. My Oncologist added Xtandi, and now the PSA number is 1.5.
The side effects are always there; gynecomastia, weight gain, and fatigue.
I am grateful for every day.
Hang in there, we don’t know what the future will bring, but maybe Pluvicto, or immunotherapy could be an alternative to chemotherapy.
Stage 4 Advanced Prostate Cancer, diagnosed 12/20. Nothing good about that except we knew the underlying causes of my physical and motional pains. That first year 2021 was all about treatment Radiation, Chemo, Hormone and teaching myself how to Dig Out of The Negative PC Surviorship Bias Ditch I'd fallen into. 2022, 2023, 2024 Have been all about building a better version me, my life, and my community.
"Life in the Betters" is an about building and living a "hopeful life style."
Hey @patrickjclancy74, Don’t know if you are aware of this but Colleen, our great moderator of this forum, has warned posters to avoid 2 topics: politics and religion.
The reasons for this are obvious: political and religious convictions are NON FACTUAL. They are merely BELIEFS that one’s affiliations - to whatever - are the true and correct ones. We can only agree to disagree but not much more than that.
This forum is about Prostate Cancer - the disease, the treatment options, the medications, the various hospitals, etc. At times, there is discussion about emotional health, coping with the disease, mechanisms we use to overcome fear or depression. And yes, God or some higher power is often mentioned as a means some use to find comfort.
But no one is allowed on this forum to preach, proselytize, cajole or otherwise imply that THEIR way is the only TRUE way! That’s simply the way it is and we all respect it. It is entirely possible that you were unaware of this rule and thought your words offered solace; so in the future please talk to us about your health and treatment and we hope to hear from you for many, many years to come!
Best
For many spirituality, in all or any of its forms, goes hand in hand with health and healing. In invite members who wish to talk about spirituality to click through to this ongoing discussion.
- How Spirituality Can Help Stress https://connect.mayoclinic.org/discussion/how-spirituality-can-help-stress/
At initiation of treatment in May 2024 my diagnosis was oligometastatic hormone sensitive prostatic cancer; GS (4+5)=9; iT3bN1M1A; NCCN Very high risk. As my current medical oncologist said, serious because it had metastasised to my pelvic region but not dire because it had metastasised to neither my bones nor my liver.
The Course of Treatment to date is:
Phase 1: 2024-04-25 to 2024-06-03: Eligard
Phase 2: 2024-06-04 to 2024-09-30: Eligard + Erleada
Phase 3: 2024-09-30 to 2024-10-25: Eligard + Erleada + Orgovyx
Phase 4: 2024-10-25 to 2024-11-17: Erleada + Orgovyx
Phase 5: 2024-11-18 to 2024-11-26: 5 Fractions of MRI Guided SBRT; Erleada + Orgovyx
Phase 6: 2024-11-27 to YYYY-MM-DD: Erleada + Orgovyx
The change from Eligard to Orgovyx was for logistical reasons since Orgovyx is a pill.
The effect of the hormone therapy on my PSA is as follows:
2023-08-21 17.5ng/mL
2023-09-25 18.5ng/mL
2024-03-28 37.3ng/mL (Three days before biopsy)
2024-04-28 ~40ng/mL (Day when initiated Eligard)
2024-05-17 25.0ng/mL (After 22 days of Eligard)
2024-06-28 2.01ng/mL
2024-08-26 0.39ng/mL
2024-09-10 0.19ng/mL
2024-10-10 0.14ng/mL
2024-11-11 0.09ng/mL
The decline in PSA along with a follow-up PSMA Ga68 PET/CT scan which showed the reduction or elimination of tumors in my pelvic region is most encouraging. By elimination I presume means reduction below the resolution of a PSMA scan if not complete elimination. Next labs will be in February since I presume the radiation precludes accurate labs for several months.
The hormone therapy has a minor effect on my quality-of-life. Perhaps a slight decrease in physical and mental energy at most. Not so for the five fractions of SBRT. Almost two weeks out and I little energy, mental or physical. In addition annoying urination/defecation issues, both predicted and both predicated to ameliorate in a few weeks. In the big picture trivial for staying alive.
I consider better than good results. First that I have prostate cancer and not a more lethal form of cancer. Esophageal cancer killed a boyhood friend within a year. Second that my prostate cancer became clinical when I was 82 years old and have lived a good life.
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"I was diagnosed De Novo high volume unfortunately, with a PSA of 28 and or 32."
Weirdly, my PSA was in the high 60s for my low-volume stage 4b (oligometastatic), which goes to show that PSA is a useful but imprecise indicator.
I think what matters is whether the PSA is undetectable (e.g. < 0.01), low (say, < 5) mid-range (say, around 10, plus or minus) or high (say >15 or 20).
The exact number isn't very predicative, though obviously it matters which direction it's moving.
-
Like -
Helpful -
Hug
1 ReactionDid Xtandi , Xofio or Radium 223 then 2 chemo for bone mets in T 5 and L1 and hip Chemo gave me fluid on lungs, and small embolism PSA shot up with PSA Flare to 180 40% get this
Now awaiting what's next Maybe LU 177 Had prostate radiated 2017 then L1 radiated 2020 Still going with PMA and feeling great at 80
advice on what's next for drugs appreciated Daralutimide??? or same as Xtandi?
My opinion is base on my personal 10 years of battling prostate cancer. Stick with hard and true scientific healthcare. Cancer research has been around for 300 years and the medical and science community have a lot of information, options and new discoveries to offer. Time is of the essence. If you want to pray, that's fine. But cancer has no religious affiliation or boundaries and, quite frankly, doesn't care if you do either. Get on with what you can do to postpone or beat this ugly disease.
-
Like -
Helpful -
Hug
4 ReactionsI don't think they're mutually exclusive.
For example, I eat well, stay active, get out of the house often, play music, garden, walk my grandpuppy, and maintain social contact: I don't expect any of those to replace my medical treatment, but they can be a great supplement, because a positive mood and lower stress strengthen my body's ability to tolerate my meds and fight the disease. For many people, religion does the same. That's not necessarily because a magical being is curing them (I'm not answering that question either way), but if it's a source of comfort, then go for it!
Or, to phrase it differently for people of faith, if your diety choses to answer your prayers by making modern medicine available to you, then it makes sense to embrace it. And if your faith and congregation are a source of support and comfort to you, then embrace them, too.
-
Like -
Helpful -
Hug
3 ReactionsI had good results for two years with Orgovyx, until the PSA number reached 7. My Oncologist added Xtandi, and now the PSA number is 1.5.
The side effects are always there; gynecomastia, weight gain, and fatigue.
I am grateful for every day.
Hang in there, we don’t know what the future will bring, but maybe Pluvicto, or immunotherapy could be an alternative to chemotherapy.
All the best,
Philnob
-
Like -
Helpful -
Hug
3 ReactionsStage 4 Advanced Prostate Cancer, diagnosed 12/20. Nothing good about that except we knew the underlying causes of my physical and motional pains. That first year 2021 was all about treatment Radiation, Chemo, Hormone and teaching myself how to Dig Out of The Negative PC Surviorship Bias Ditch I'd fallen into. 2022, 2023, 2024 Have been all about building a better version me, my life, and my community.
"Life in the Betters" is an about building and living a "hopeful life style."
-
Like -
Helpful -
Hug
5 ReactionsHey @patrickjclancy74, Don’t know if you are aware of this but Colleen, our great moderator of this forum, has warned posters to avoid 2 topics: politics and religion.
The reasons for this are obvious: political and religious convictions are NON FACTUAL. They are merely BELIEFS that one’s affiliations - to whatever - are the true and correct ones. We can only agree to disagree but not much more than that.
This forum is about Prostate Cancer - the disease, the treatment options, the medications, the various hospitals, etc. At times, there is discussion about emotional health, coping with the disease, mechanisms we use to overcome fear or depression. And yes, God or some higher power is often mentioned as a means some use to find comfort.
But no one is allowed on this forum to preach, proselytize, cajole or otherwise imply that THEIR way is the only TRUE way! That’s simply the way it is and we all respect it. It is entirely possible that you were unaware of this rule and thought your words offered solace; so in the future please talk to us about your health and treatment and we hope to hear from you for many, many years to come!
Best
-
Like -
Helpful -
Hug
8 ReactionsThank you members for referring to the Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/ Not everyone shares the same religious beliefs. To remain inclusive and on topic, some posts have been removed.
For many spirituality, in all or any of its forms, goes hand in hand with health and healing. In invite members who wish to talk about spirituality to click through to this ongoing discussion.
- How Spirituality Can Help Stress
https://connect.mayoclinic.org/discussion/how-spirituality-can-help-stress/
-
Like -
Helpful -
Hug
2 Reactions@ewatson201, how are you doing? Have you recently been diagnosed with stage 4 prostate cancer?
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Helpful -
Hug
3 ReactionsAt initiation of treatment in May 2024 my diagnosis was oligometastatic hormone sensitive prostatic cancer; GS (4+5)=9; iT3bN1M1A; NCCN Very high risk. As my current medical oncologist said, serious because it had metastasised to my pelvic region but not dire because it had metastasised to neither my bones nor my liver.
The Course of Treatment to date is:
Phase 1: 2024-04-25 to 2024-06-03: Eligard
Phase 2: 2024-06-04 to 2024-09-30: Eligard + Erleada
Phase 3: 2024-09-30 to 2024-10-25: Eligard + Erleada + Orgovyx
Phase 4: 2024-10-25 to 2024-11-17: Erleada + Orgovyx
Phase 5: 2024-11-18 to 2024-11-26: 5 Fractions of MRI Guided SBRT; Erleada + Orgovyx
Phase 6: 2024-11-27 to YYYY-MM-DD: Erleada + Orgovyx
The change from Eligard to Orgovyx was for logistical reasons since Orgovyx is a pill.
The effect of the hormone therapy on my PSA is as follows:
2023-08-21 17.5ng/mL
2023-09-25 18.5ng/mL
2024-03-28 37.3ng/mL (Three days before biopsy)
2024-04-28 ~40ng/mL (Day when initiated Eligard)
2024-05-17 25.0ng/mL (After 22 days of Eligard)
2024-06-28 2.01ng/mL
2024-08-26 0.39ng/mL
2024-09-10 0.19ng/mL
2024-10-10 0.14ng/mL
2024-11-11 0.09ng/mL
The decline in PSA along with a follow-up PSMA Ga68 PET/CT scan which showed the reduction or elimination of tumors in my pelvic region is most encouraging. By elimination I presume means reduction below the resolution of a PSMA scan if not complete elimination. Next labs will be in February since I presume the radiation precludes accurate labs for several months.
The hormone therapy has a minor effect on my quality-of-life. Perhaps a slight decrease in physical and mental energy at most. Not so for the five fractions of SBRT. Almost two weeks out and I little energy, mental or physical. In addition annoying urination/defecation issues, both predicted and both predicated to ameliorate in a few weeks. In the big picture trivial for staying alive.
I consider better than good results. First that I have prostate cancer and not a more lethal form of cancer. Esophageal cancer killed a boyhood friend within a year. Second that my prostate cancer became clinical when I was 82 years old and have lived a good life.
-
Like -
Helpful -
Hug
5 Reactions