I’m on Firmagon every 28 days, Zytiga, ( Abiraterone) and Prednisone since 07/2022. I have concerns if Anyone had their PCA Morp into Neuroendocrine Cancer or Small Cell Carcinoma while on Lupron or Orgovyx, Nubeqa etc, or any other medication prescribed.
Does or Has Anyone heard or read that... - Advanced Prostate...
Does or Has Anyone heard or read that PCA can Morp into Neuroendocrine Cancer while on Lupron or Orgovyx, Nubeqa or any other medication?
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Shorehousejam
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- Prednisone
- Prostate cancer
- Fractures
- Intestinal and stomach conditions
- Zytiga
- Firmagon
- Lupron
- Nubeqa
- Orgovyx
53 Replies
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I can't say that I have, but I would imagine most Neuroendocrine cancer evolves from mon-Neuroendocrine cancer.
And the environment under which it is most likely to evolve would be under circumstances of heavy duty treatment.
As most Neuroendocrine patients don't have much of a half-life, I would not expect a lot of live Neuroendocrine patients here to be able to respond from experience.
True
I have heard as per my other post, people on Zytiga has had their PCA Morp into NC
I think the question to be asked is "compared to what"
Is there any reason to believe that this is likely with respect to alternative treatments.
I’ve been on Zytiga/AA for 62 months. No other new DX since then.
Question on a slightly different topic. Are you generic AA
sorry, accidently hit send to early. Question on a slightly different topic. Are you on generic AA for a few hundred dollars? And your insurance covers that, correct?
My BlueCross BlueShield uses CVS exclusively for all my meds and CVS is charging me almost $10,000 per bottle or per month for generic abiraterone. I found it for $200 elsewhere but then I would have to pay 100% out of pocket for it. With my other treatments maxing out my deductible and co-pays, still better for me to go through CVS at $10,000 a bottle. But pisses me off that they are ripping all of us off like that.
I am just trying to plan out for next January when all my deductibles start again.
Thanks
You should be pissed off, I am!We are getting ripped off.
Our government has knowing, given
Big Pharma the power to exploit us citizens. Sadly, there is nothing to little we can do about it. 😕
We can do something............ Revolt........ and March on Washington DC.....I will...will you?
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 09/07/2023 3:07 PM DST
Revolt, on who? They are all in on it.Money is their god. Not good for us sick bastards.
Best luck to us all. 🤞
Easy.... kill them all..............
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 09/07/2023 5:41 PM DST
Dear j-o-h-n, I though of that once, but there are not enough bullets. We can only do our best, in living our lives.Best luck
I guess I'll have to contact my dear friend the witch "Hecate" to caste a death spell on all those idiots in Washington DC........ One and they're done..........(for payment she wants a new broom - electric) ....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 09/07/2023 7:23 PM DST
Agreed with your view on this. A buddy is a COO for a medical insurance group and he said CVS was likely getting a large kickback from a AA supplier so they could both make huge profits on a us suckers who have no choice but to buy it from them.
Again, to clarify, I can buy elsewhere at $200 or less but that would be additional out of pocket costs for me since I have met all my copays and deductibles this year.
Also, I did spend multiple hours on the phone with both BCBS and CVS at the beginning of the year. But like beating your head against the wall as they wouldn't budge on covering my AA I could buy at $200 elsewhere. I had several supervisors tell me they completely understood my frustration but their hands were tied by what their bosses had negotiated "on my behalf". aarrggg.
Try Good Rx app. CVS was about that price. Got it with the app for $200. Also this year switched to AARP insurance. The cost is now $79. Compare insurance costs with their med prices. Penciled out to switch.
Yes, With metastasized prostate cancer I'm forced to play a pricing shell game for my life! Sucks. 😣
LISTEN, BYPASS BLUECROSS BLUESHIELD, MEDICARE. GO STRAIGHT TO THE GOOD Rx app. Search for your area. In St Petersburg, FL PUBLIX is $140/mo. Dont ask me how but they know about this at CVS. Dude you will go broke !, Be a survivor, then take your family on a fun vacation while you still can.
Capice’?
Mike
Unless I am looking at this wrong, as much as I would love to drop CVS's ripoff pricing, it is cheaper for me to go with it because of all my treatments and scans, I already maxed out my insurance copays, etc so it is "free" to me via CVS now vs $1,680 for the year for Publix.
Does your insurance let you buy the your AA at Publix?
Have you been taking the prednisone that long as well?
What is your Gleason Score? PSA at diagnosis?
Clinical and genomic characterization of treatment-emergent small cell neuroendocrine prostate cancer: a prospective multi-institutional study
Rahul Aggarwal, Jiaoti Huang, Joshi J. Alumkal, Li Zhang, Felix Y. Feng, George V. Thomas, ...
• Abstract
Aim
The prevalence and characteristics of treatment-emergent small cell neuroendocrine prostate cancer (t-SCNC) are not well characterized in the era of modern androgen receptor (AR)-targeted therapy. We aimed to characterize the clinical and genomic features of t-SCNC in a prospective multi-institutional study.
Method
Patients with progressive, metastatic castration-resistant prostate cancer (mCRPC) underwent metastatic tumor biopsy and were followed for survival. Metastatic biopsy samples underwent independent, blinded pathology review and RNA and DNA sequencing.
Results
A total of 202 consecutive patients were recruited. One hundred and forty-eight (73%) have already progressed on abiraterone and/or enzalutamide. The biopsy evaluation rate was 79%. The overall incidence of t-SCNC detection was 17%. AR amplification and protein expression were present in 67% and 75%, respectively, of t-SCNC biopsy samples. t-SCNC was detected at similar proportions in bone, lymph node, and visceral biopsy samples. Genomic alterations in the DNA repair pathway were almost mutually exclusive with t-SCNC differentiation (P = 0.035). Detection of t-SCNC was associated with reduced overall survival in patients who had previously received anti-AR therapy targeting mCRPC (hazard ratio, 2.02; 95% CI, 1.07 to 3.82 ). Unsupervised hierarchical clustering of the transcriptome identified a small cell-like group that was further enriched for adverse survival outcomes (hazard ratio, 3.00; 95% CI, 1.25 to 7.19 ). A t-SCNC transcriptional signature was developed and validated in multiple external datasets with >90% accuracy. Several transcriptional regulators of the t-SCNC have been identified, including the pancreatic neuroendocrine marker PDX1.
The team's results also indicate that the two types of small-cell tumors are distinct. Pretreatment small-cell tumors lack the androgen receptor, usually affect patients who have low PSA levels, and frequently metastasize to the viscera. In contrast, t-SCNC tumors show high levels of androgen receptor expression, typically occur in patients with PSA levels greater than 60 ng/mL, and are less likely to metastasize to organs such as the liver!
Yes, I've seen several posts indicating such a mutation but can't cite a specific case.
Here is some info:
ncbi.nlm.nih.gov/pmc/articl...
ascopubs.org/doi/10.1200/JC...
Sciarra et al showed that intermittent ADT administration significantly reduces the increase in serum chromogranin A levels as opposed to continuous ADT. Therefore this treatment modality can potentially prevent the development of t-SCNC.
This is exactly what I want to discuss with my Medical Oncologist
The problem is that it is a double edge sword. If you do an intermittent treatment regiment, this may or may not work with your specific cancer. Sometimes it may allow the cancer to metastasize sooner while still being hormone sensitive. While it may not be as aggressive as the neuroendecrine carcenoma, it can still spread rapidly.
I would suggest discussing this with two oncologists from different medical practices to see what they say,
Good luck.
So what is the consensus opinion?
The best medical experts on the world have no consensus on this, but maybe one will emerge from this site of laypeople.
So as of 2023, if it comes down to choosing to avoid the drugs that offer the most against this disease now out of concern for one’s health later, I’m not invested in such a consensus at this time.
I meant just amongst us girls
😁
May be of interest - Sympathetic signaling facilitates progression of neuroendocrine prostate cancer (or "high concentrations of the sympathetic neurotransmitter norepinephrine (NE) induces NED-like changes in PC cells in vitro, evident by their characteristic cellular and molecular changes. ")
My metastatic prostate cancer oncologist has pointed out that we cannot rely solely on PSA tests to reflect extent or aggressiveness of the prostate cancer. Frequent CT, bone, and PMSA-PET scans are required. I'm getting those every 3 months.
That is smart and true. My dad has small cell and was diagnosed while having an undetectable PSA and on Lupron, among other drugs. If we could go back…
I've been asking about this recently as well. My PSMA-PET came back negative with a PSA of 4, yet a subsequent FDG-PET found 4 mets. From what I've read, the only way to tell definitively is to have a tissue sample. I have requested a needle biopsy of one met and am awaiting insurance approval.
My wife asked for a CGA TEST which is a Carcinoid or Neuroendocrine TEST my result is 14 points higher, (former post here if you want to look) only fighting PCA Gleason 8/9 a year, 3 Lytic lesions, still hormone sensitive and waiting on an appointment since July! With Gastroenterologist
My stool is with bright red blood, just had stool test for bacteria or infection all negative.
My wife is slightly freaking out, shaking hands and I’m freaking out also the silent type.
We are praying it’s IBS, Crons or Diverticulitis
Sorry for your findings. I have been watching the chromogranin A myself and it’s always high. The question is how high is bad and how high is acceptable? What are your numbers? CGA?
I am concerned as I m bleeding from rectum in stool since July, had my stool tested for an infection and bacteria, they tested everything but the one test my wife wanted which was H pylori, she is asking primary to test specifically for that once again. I’m concerned as my CGA is high, I have 3 lytic lesions and blood in stool consistently as if it isIBS
I have consult with a Gastroenterologist I had to wait for since July is next week to start test, getting a CT scan, my wife today asked to add an ultrasound and mri from medical oncologist.
Freaking out.
My wife asked for these tumor marker test the last being the CGA which according to NYP Cornell standards of
Standard range is 0 - 103 ng/mL
My Chromogranin A result is 117 ng/mL
14 points higher in my last post I made here yesterday Tall Allen asked why do I care? I don’t get that response.
My Chromogranin A is almost close to yours. My MO didn’t seem to care much. He is a very famous MO In prostate cancer. He said, it’s probably elevated from the cancer. Did you test also for CEA? Mine also high and am scheduled to get colonoscop late this year. It’s very hard to get answers about these markers. It also scares me as it’s related to neuroendocrine PC. I try not to think about it but as you know it’s hard. Wishing you lots of luck.
Yes I did a CEA Test, my results were
My Results. Carcinoembryonic Antigen <0.5 ng/mL
<=3.0 ng/mL
Non-Smoker: <= 3.0
Smoker: <= 5.0
As of February 2017, this test is performed on the Siemens Centaur using Chemiluminescent Immunoassay. Values obtained with different assay methods or kits cannot be used interchangeably. The results cannot be interpreted as absolute evidence of the presence or absence of malignant disease.
My Lactate Dehydrogenase (LD) Results 168.0
My LDH is: 142 U/L
[130 U/L - 250 U/L]. So if the reference of yours like mine, then it’s great. Also great your CEA and bit high your CGA. I think you should be ok and better than mine. I think, if your worried about neuroendocrine pc, then if possible they can take a biopsy of one of the Mets and test for it if possible. the question for me is, even if it’s neuroendocrine, would that change the treatments plans?
Right now because I have been consistently bleeding with mainly diarrhea since the middle of July, my Wife and I are praying it’s not a tumor or colon cancer. In the beginning we asked for a Met biopsy and our NYP Cornell Medical Oncologist said no, not needed.
I wonder if messing with a met can spread or make more mets
I have 3 lytic lesions.
I had my prostate removed and 8 lymph nodes removed all 8’negative for pca
However, my Gleason score was upgraded to Gleason 9 by John Hopkins Johnathan Epstein. I have positive margins, microscopic bladder neck and possibly bladder wall.
Medical Oncologist felt no radiation is needed. His thought is to wait if and when PSA rises.
We were going to get a consultation for radiation but with the new issue, I need to get to the bottom of it
Yes. Beltran wrote about it.
sciencedirect.com/science/a...
Thank you sharing, I’ll gladly give it a read
just curious, do patients really read these long scientific literature and understand something from it? I will be dead before I finish reading them and get any help as a result. Thanks for posting though
Hi, I’m Jeff’s wife Michele hence JaM.
We share this forum depending on who’s up to reading. I do read lengthy publications from journals, studies, peer reviews, published papers by Medical Oncologists including of course from John Hopkins etc. We are concerned because Jeff’s Gleason score was upgraded to a Gleason 9, 4 being a Ductal component and 5 being a Glandular, the cells look very different from healthy cells, which is called poorly differentiated or undifferentiated.component. Gleason 4+5 = 9
Small Cell Prostate Cancer (SCPC), and more generally Neuroendocrine Prostate Cancer (NEPC), are thankfully rare types of prostate cancers. They are not responsive to hormone therapy, to taxanes (Taxotere or Jevtana), or to radiation. They are difficult to detect and monitor with the kinds of imaging used to detect prostate adenocarcinoma (mpMRI, bone scans, PSMA PET scans), but may show up with FDG PET . They do not put out PSA, PAP or bone alkaline phosphatase. Special biochemical tests or biopsies for chromogranin A, neuron-specific enolase (NSE), synaptophysin, DLL-3, CD56, and other biomarkers are required. It often appears at a "mixed type " or Differentiation....hope this somewhat helps,
I'm terrified of this morphology.
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