I’ve had some very concerning symptoms lately so I started looking up more about NEPC. I have some of the listed symptoms.
I’ve been under enormous stress lately, caring for my mom who’s in her 90s. The stress may have cause my cancer to mutate.
Last year I remember reading something on this site about neuroendocrine prostate cancer occurring in a higher than expected rate of about 15 to 20% of people advanced prostate cancer. I was doing a search last night. It said it can be more like 17% to 40% of the people with a PC and up with an NEPC!
Neuroendocrine prostate cancer (NEPC) is rare, accounting for only about 0.2–1% of whole prostate cancers.1 On the other hand, it has been reported that 17–40% of the castration-resistant prostatic cancers under anti-androgen therapies changed into NEPC.2 The longer anti-androgen therapy continues, the more likely NEPC occurs.3 As the level of prostate specific antigen (PSA) in NEPC is often in the normal range, NEPC is overlooked until more severe clinical symptoms occur. The median overall survival is short in NEPC and a standard therapy has not been established yet.3 Thus, the management of NEPC is challenging, and several examinations and therapies are needed frequently. Herein, we report a case of NEPC treated with multimodal examinations and therapies.”
When I looked up endocrine system and talked about things that I’ve been worried about relative to thyroid gland, adrenal gland, and other areas of the endocrine system feels like that to me because the stress affected the way I feel, and I’ve had night sweats and chills a lot for the last two months. I also had my potassium test out at 3.3 when I went to the ER two months ago. Doctors have given me mixed answers about how potassium can get the 3.3 when I’m eating food and potassium and if I had one bad day of eating low potassium foods and also got dehydrated. Could your potassium drop from 4.6 to 3.3 within 1 to 2 days, just seems strange to me that my potassium was that low when I was at the ER. I’m not taking Zytiga or extandi or prednisone. I’m just taking orgovyx and nubeqa.
Another medical article I read last night said that most of the people they get diagnosed with neural endocrine prostate cancer have a PSA below for when diagnosed. Mine is currently below four.
has anyone on this site and diagnosed with an EPC and if so, what were the initial symptoms that you had? Should I ask the doctors to run in order to try and diagnose NEPC? I read about a new test that they developed between Dana-Farber and some medical facility in Italy, but I don’t think that’s a nationwide available type of test.
George
Written by
GeorgeGlass
To view profiles and participate in discussions please or .
Do you have any science backing this claim or Is this your opinion based on your experience? I've never read any articles indicating a link between mutations and NEPC...but if you have one I'd be interested in reading it.
According to a systematic review, the most common mutations in neuroendocrine prostate cancer (NEPC) are TP53 (49.8%), ATM/BRCA (16.8%), RB1 loss (58.3%), PTEN loss (37.0%), AURKA amplification (28.2%), and MYCN amplification (22.9%
AZD5305 is the chemical name for Saruparib, which is a selective and potent inhibitor of PARP1. It is an orally active PARP inhibitor that has anti-proliferative activity and inhibits cell growth in cells with DNA repair deficiencies.
I'm in the nmcspca group. I'm doing great on the mono-enzalutimide treatment so far. Energy levels are up, etc. Just completed 5 years since Dx'd in May 2019. The BRCAwayis of interest but seeing the other study is more of an interest now that it's phase 3.
As an aside, I'm on the 5th day of my final 5 day FMD (Dr. Luongo). I started in March.
Anyhoo, I would say that one of the noticable changes or improvements is joint pain reduction. I'm extremely active (running, biking, pickleball, ice hockey, weight lifting) and that all puts strain on the joints, etc. I've suffered from bursitis in my right shoulder for years and that magically nearly disappears after 5 days. I still exercise during the 5 day period but cut it back 75% in intensity.
What changes do I experience? My resting heart rate, which usually is in the mid 50s, drops to 50-52. My BP also drops, which is good since I've been treated for BP since my 30s. And obviously I dropped a few pounds.
My hope is the hype about rejuvenation is real and I'm improving my immune system and overall cellular health. Time will tell.
ah yes I have been following dr Longo for many years since he studied centenaries in Italy as first populations. I do some variation of fast mimicking diet because darolutamide cannot be taken on an empty stomach or it does not get adsorbed well. We will see if it does good on the long run but from your experience I would say yes
Well...CharlieBC posted the link to the paper you are referencing. If you actually dig into the details....4 of 113 men with ATM went on the Develop t-NEPC 2.7%. Hardly a driver IMHO. Having T53 or PTEN is much more prevalent and really should be monitored by the MO. You may have had de nova NEPC and your just getting where it's the driving subtype.
My Wife suspects that many guys that do morp, have a form of BRCA 1/2, A Germline Copy drop and / or a Genectic Mutation(s).
But, there is soo much to know.
That’s Why I think a multi modal approach is best, chemotherapy, surgery or radiation, adt, vacation, adt, more radiation (play whack a mole) different adt, add immunology, perhaps more chemotherapy and perhaps interleukin inhibitors.
It’s about gaining longevity, cure intent is very hard to achieve because of all the factors involved.
Smart man...... to let the wife do the climbing...(almost impossible to fall off a ladder if you're standing on the ground unless you're busy reading).....
She has more to say, she is convinced that treating prostate cancer only, meaning treating with adt is good and chemotherapy but lytic lesions should be treated like myeloma cancer and blastic with radiation.
Brain, Liver and Lung Mets should be tested and treated as pca but during the same time or intervals as separate cancers.
I think a multi modal approach is key for Longevity as my bio indicates, I was not forceful enough.
Absolutely raise your concerns and observations with your care team - don't go it alone, GG!
You can ask for a Chromogranin A (CgA) blood test (about $160, so they shouldn't balk), which is the most commonly tested-for NEPC marker. However, CgA levels can be affected by kidney/liver problems, and CgA is not an appropriate marker for some types of NEC.
Remember, the only way to confirm the existence and type of any tumor is through imaging and biopsy. Good luck!
The secret is in open now after years and years of suppressing the fact that Androgen deprivation and Anti Androgen meds used continuously for many years turn the cancer cells into Neuroendocrine variant at least in 25% of men. Years ago, We used to have heated discussions on this forum about this issue. You can still see my previous post about NE Variant. ...treatment emergent type.
If you suspect treatment emergent neuroendocrine variant.. you should urgently get (1) serum Lactate Dehydrogenase (2) Serum Neuron specific Enolase (3) Serum Chromogranin A'' If these 3 blood tests come in normal range then you can have peace and sleep without worrying about NE variant. If still not clear, next step will be getting a DOTATATE Pet-Ct which detect NE type cancer.
I recall those conversations. But I think you are missing the point. Even if you are correct, and long term ADT leads to Neuroendocrine variant, what does that mean for treatment? Are you suggesting greater longevity among PC patients that avoid ADT to lesson the chance of Neuroendocrine variant? We know by phase 3 double blind studies thats not the case. Your point is only relevant if there’s a better alternative to ADT. As far as I know, there is not.
My MO was recently concerned about this very thing, cancer changing and i am mHSPC. He ruled it out with conventional scans. I have low PSA, Pten Loss, possible progression on CT but disease appears stable so falling back on PSA and if I feel any pain. 6 months to next scans.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Stage 4 Prostate Cancer Questions
What next after chemo, neuroendocrine cancer
NEPC Targeting 
NEPC Treatment Question
Testing for glutamine levels to check for transformation to neuroendocrine cancer from adenocarcinoma?
