Between a rock and a hard place
I am not sure if this topic has been discussed here before but it’s extremely frustrating to me since I don’t understand which way to go
Very very interesting video. In a nut shell, the video discussion is about the introduction of NEPC and progression from HS to Castrate resistant due to the use of hormone therapy
What is the dilemma?
I wish you can explain this to me in plain english:-). damn if you do , damn if you don’t With regard to using ADT. the video explains that NEPC is introduced by an sing heavy ADT drugs. I talked to my MO a month ago and he said “ I caution you from thinking like that since NEPC is in about 20% of patients “. So, that is the delima. Since I heard about that type and since my Chromogranin A is always high, I feel that I am going to get it so it will be a death sentence.
While it's true that cancer will always find a way around whatever you throw at it, your best strategy is to keep life as good and as long as possible. There is no dilemma. Intensive hormone therapy works so well that patients survive longer than ever thought possible. Eventually, they will stop working unless something else kills you first. Whether they stop working via NEPC (in 17%) or some other mechanism doesn't really matter.
Serum Chromogranin A has nothing to do with NEPC.
Thank you, TA. you are Gods great gift to us patients on here. This statement is the best I heard “Serum Chromogranin A has nothing to do with NEPC.”. I don’t know why this marker stuck in my head all the time and every time I think of it. It ruins my day. Happy new year
sorry, I forgot to say that I remember in the video the MO mentioned that something like Chromogranin A is a characteristic of NEPC.
I am so confused about this. I wish I never heard of it.
When they stain a tumor for Chromogranin A, it is one non-definitive indicator that the tumor is neuroendocrine. Serum Chromogranin A is not the same thing.
Here's a good paper on NEPC, covers many aspects of it's origin.
The diagnosis of NEPC is currently based on metastatic tumor biopsy confirming tumor morphology. Although there are no standard criteria for when to perform a biopsy to look for NEPC, one may consider this in patients with particularly aggressive disease, atypical spread, and/or progression with low or non-rising PSA levels. The NCCN guidelines currently recommend consideration of metastatic biopsy in suspected cases of NEPC transformation, as prostate cancer patients that develop small cell carcinoma could be considered for platinum-based chemotherapy regimens.
Clinical criteria of aggressive variant prostate cancer (AVPC) and eligibility for alisertib trial.
(i) histogically determined SCPC.
(ii) exclusively visceral metastases.
(iii) predominantly lytic bone metastases.
(iv) bulky (≥ 5cm) lymphadenopathy or high-grade (GS ≥ 8) tumors mass in prostate/pelvis.
(v) low PSA (≤ 10 ng/ml) + high volume (≥ 20) bone metastases at initial presentation or upon castration-resistant symptomatic progression.
(vi) presence of neuroendocrine markers on histology (positive staining for CgA or Syp) or in serum, + serum LDH ≥ twice the IULN, malignant hypercalcemia or serum CEA ≥ twice the IULN.
(vii) short interval (≤ 6 months) to castration-resistant progression after initiation of ADT.
ncbi.nlm.nih.gov/pmc/articl...
Thanks for your reply. I don’t think I have any of the above criteria. I have high chromogranin a, a little over the high level, and also hight CEA, a little high over the high level and I have a PTEN loss in gene mutations, and my MO a few years ago, told me I have an aggressive cancer
It's fast moving and very aggressive.
I would start lining up out of town second opinions right away. Visit them as the appointments become available. I would stick to major teaching hospitals.
Don't neglect Germany.
You should find a fair amount of discussion on the subject here.
he doesn't have a reason to believe he has NEPC !!?? or does he?
??? I guess that is unclear. But I answered as if he had some reason to believe he has it.
I don’t have a reason except high level of chromogranin a, a little over the high level, and also hight CEA, a little high over the high level and I have a PTEN loss in gene mutations, and my MO a few years ago, told me I have an aggressive cancer
You have a very valid dilemma, don’t let anyone tell you otherwise. It’s just a fact that adt will probably stop working and really hurt your internal organs, mainly heart which is our lifeline. It was a rather easy choice to get off adt and solely use ivermectin n cbd oil. My psa has declined readily for the last year 1.95 to.95 and I couldn’t be happier n feel better. Read n research as much as you can n don’t get sucked up with what people tell you if it doesn’t make sense, deal w only the facts n try n deal w what kills cancer rather than extend your life a few years at the expense of destroying your internal organs… good luck and you can read up on my bio if you like…😊😊
He fears he might end up with NEPC..... as we all might.....but men live longer with ADT than without..
I haven't watched the vid yet, but studies have shown that when men become resistant to ADT, they have been able to resensitize using BAT therapy. (bipolar androgen therapy) . Doing studies at John Hopkins and other places.
Doesn't chemo also re-sensitize in many cases?
Yes., funny how it’s the exact opposite of what they’ve been telling us for years that removal of testosterone is the only thing that works, now they’re finally figuring out testosterone and lots of it actually kills cancer ♋️ and at the very least will stop psa drastically… my opinion is get on the bat immediately along w ivermectin n cbd and try n kill the cancer early on…
I have found out one thing about this disease, that one treatment that works for me might not work for you and visa versa. Having said that you must try everyhing they suggest, as long as your bloodwork is good. There's no answer to what will work or won't until you try it.
Stage 4 for 10 years, that's me, and I have had just about everything available. Listen to your heart and not a know-it-all.
I have to say that I don't think it's exactly true that "there's no answer to what will work or won't until you try it." There is certainly some truth in that, but there is at least one other possibility. If you can get an adequate sample of tumor tissue there are labs that can do extensive testing on that sample of many treatments and can often report treatments that are likely to work and treatments that are not likely to work, based on these tests and genomic testing. I'm no expert (nor a doctor), but my studying indicates that in some cases that can save vital time by not doing treatments that are not likely to work. As an example, you could read online about the Weisenthal Clinic in Southern California.
I have had all the test kits to find anything, from dna to tumor samples and all have come back with no markers and no idea on whats going on, or where it came from. So, I have accepted that it's mind over matter and I will die some day with it and not from it. 10 years strong at stage 4 and flying the middle finger at my disease.
Truly a dilemma. Dammed if you do, dead if you don’t. Perhaps some form of adaptive therapy to squeeze through for some?
I watched the video and understood very little.Above me. 🤯
That's for YOU to decide. That's my whole point. You have the power to decide whats good or not for you. The best way to beat the disease is you! Good luck!
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