I come asking about options that my family may not be aware of, or that our doctor may not have presented us with. To give everyone a brief breakdown of my dad's treatment thus far, it has consisted of 3 chemo regiments which I will list below.
Diagnosis June 2019 Stage 4, mets to liver lungs and pelvis, PSA levels negligible as this type of prostate cancer never presented with elevated PSA levels.
1st regiment: Taxotere 6 infusions which saw progress in tumor reduction size. 3 months off.
2nd regiment: Taxotere + carboplatin 9 infusions, scheduled for 10, but scans at the 9th didn't show reduction in size. 4 months off.
3rd regiment: Carboplatin + jevtana 3 infusion, scheduled for 6 but scans at the 3rd showed increase in size of tumor in liver so treatment was called off and now we are without a direction.
Ask any questions with any info you might need and I will do my best to answer.
Location information: Minneapolis, Minnesota.
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lsteacke
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I'm going to let the group members take it from here with the information you provided. It does seem strange they have never radiated his tumors, they blasted mine with SBRT. Anyways I'm sure the group experts will weigh in soon. Good luck!
Have you seen Charles Ryan at U of Minnesota? I've heard Emmanuel Antonarakis is coming there - definitely worth talking to.
I assume he has a poorly differentiated type of PC. Have they done a cell histology and IHC on some biopsied metastatic tissue? I'm wondering what is the degree of expression of the AR, PSA, PSMA, CGA, synaptophysin, NSE, CD56, and DLL3. There are some clinical trials he may be eligible for.
We haven't talked to anyone at the UofM yet, so thank you for the reference! Yes I believe it is considered poorly differentiated and atypical. I can try to get you the information in regards to cell histology. Always appreciate your responses here Allen, thank you!
caveat >> I'm NOT a doctor, have no financial interests but was an early in development patient receiving a similar procedure in 2015 having 1st been castrated, then cryoablation of the confined in the right half of my prostate the GL10 tumor THEN 7 months later the immuno procedure and then with bi-weekly Testosterone injections beginning 1 month later and continuing until ?????
*PLEASE request or have post deleted if deemed inappropriate*
Sometimes, "poorly differentiated," "dedifferentiated," or "lineage plasticity."
The idea is they no longer express many of the proteins (like PSA or the AR) that the original prostate cells did. It is those proteins that make them susceptible to hormone therapy. Sometimes they show up as neuroendocrine-like cells, but most often they are not associated with any phenotype.
I would also recommend Dr. Eugene Kwon at the Mayo. I have been with him 7 years and is wonderful doctor. You have the resource in your back yard and they make it simple to go there.
I never heard of a prostate cancer that does not express with PSA as it grows. I'm not a doctor but I have learned of a couple of things that might help you out. First is lycopenes. Lycopenes retard growth of prostate cancer cells as well as other types of cancer. Here's a link for example:canceractive.com/article/ly...
I have also learned through personal use that continuous, sustained use of lycopene-rich foods, such as spaghetti sauce, catsup, and other cooked tomato based foods, reduces the growth of prostate cancer tumors in several locations in my body including lymph nodes. This means that I intake lycopene rich foods on a regular basis, several times a day. One easy way to do that is with V8 juice, (low sodium), drinking a quarter cup every 4-6 hours with some kind of oil-including food such as potato chips.
Second is the fact that heat over 106 degrees F can kill cancer cells of any type. To apply this personally I wait for pain that I believe is caused by tumor growth. In my case it is generally in lymph nodes which are relatively close to the surface. I turn the heat on shower valve to over 110, say up to 120 degrees, which I measured for a couple of years until lately I am pretty able to do by feeling the water. Shower valves in the US are designed to limit possiblilty of scalding so it is relatively safe even at highest level, but I have learned to back off from the top heat. I apply to the location of tumor growth for 25 to 50 seconds per day. It hurts and causes reddening of the skin but otherwise is harmless. For awhile I slept on top of a heating pad, which is not recommended by the manumacturers but gets the heat deeper, especially while sleeping. The temperatures involved in that approach can be up to 140-150 degrees F so that is a bit dangerous although with clothing it can be reduced to the desirable range, 110-120 degrees.
Beyond that, for deeper tumors such as liver and lung, I do not have experience but I understand proton therapy may be necessary to kill tumors.
I just want to confirm the continuous use of lycopene. It will not fix the problem in a few hours, but it must be a standard morning and evening drink. Go in heavy. I drink 2000 mg of cayenne pepper (4x500 mg capsules) with at least three big spoons of tomato paste every morning, every night. Total of 4000 mg capsaicin. Drink it just after breakfast and dinner. Lycopene kick start capsaicin. They work better together.
I am on a drug holiday at the moment. So I throw anything down my throat without my Oncs permission 😀. So I also take 15 ml Abendazole morning and night with my food. I bought Valbazen from the farmers coöp. Up to now I haven't start bleating or moohing, and the PSA stays under 0.03.
A biopsy and genetic testing might point the way to new treatment options, and would be a good place to start.
I have neuroendocrine prostate(?) cancer, it progressed in my liver while my PSA was undetectable. As mentioned by Tall Allen, cancer can mutate and lose it's identity as prostate tissue. My liver biopsy indicated neuroendocrine cancer of unknown origin, but it was presumed to be the prostate because I was originally diagnosed with metastatic prostate cancer and a PSA of 216. However I also had a localized bladder cancer that was removed surgically and presumed cured. One of three oncologists surveyed thinks my neuroendocrine cancer may have originated in the bladder and not the prostate, which is a somewhat common sense conclusion considering I had a big tumor in my bladder.
Anyhow, the preceding paragraph is meant to give examples of how cancer can change radically over time. I'm currently having success with Folfiri chemo which is normally used for colon cancer, but has been shrinking my liver tumors for the past four months. This originally seemed like way out of the box thinking to me, but I've since learned Folfiri is considered by some to be a good next step for neuroendocrine cancers after carboplatin has failed. It certainly is different than the platinum and taxane chemotherapies your dad already has.
Let me repeat the recommendation to get a biopsy. If your dad has neuroendocrine cancer, know that a) it is very aggressive, but b) it is very similar to small cell lung cancer, and there are a lot of treatments for small cell lung cancer that can be tried.
The other reason to get a biopsy and genetic test is to rule out potential treatments that won't work. I'm sure you know, but I can also say from personal experience that a harsh treatment that causes significant side effects but doesn't slow the cancer is the worst thing a cancer patient can experience.
One final thought: Many here recommend getting an oncologist that specializes in prostate cancer. That's great if your prostate cancer acts like prostate cancer. The minute it starts morphing into a poorly differentiated cancer, IMHO, you are better off with an oncologist that has a wide range of experience with different cancers and can borrow treatments used for other cancers. I actually have both. My primary oncologist is a smart and very experienced doctor who treats all cancers, and was the one that suggested Folfiri. I also occasionally see Dr. Beltran at Dana Farber who is researching neuroendocrine prostate cancer, and is actively involved in clinical trials. Between the two I feel like there are at least a half dozen potential options available to me which include both clinical trials and off-label use of treatments approved for other cancers.
Best of luck to your dad! I'm convinced there are options if you can find an oncologist who is willing to throw out the book of standard prostate cancer treatments and consider treatments that might work for your dad's unique cancer.
Hey Tom, thank you very much for your thorough reply. I need to find out if it is neuroendocrine cancer, but either way I really appreciate your reply. Genetic testing all came back inconclusive.
Too bad about the genetic testing. For what it's worth, I lucked into getting an experimental genetic test that showed genes that had been duplicated or lost in addition to mutations. I have very few mutations, but lots of two copy deletions of tumor suppressor genes, and extra copies of tumor promotor genes, and a few lost copies of genes associated with cells sticking together instead of floating around the body and forming metastases. It really helped explain the behavior of my cancer, though it didn't open up any new doors for treatments.
Remember God is on his side..........(yours too)..
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 04/25/2021 9:57 PM DST
Hey guy! If you are the son?
This means to check your PSA starting at 40.. My dad had this also but I never checked until I stopped peeing .. at 53 . Don’t do that .. take care of yourself .. and him . good luck to your father.
I’m the youngest of four boys and the only one to get my dads pc. Live as stress free as possible. Living with self imposed stress is a killer . That’s what I did. Sweated the small stuff constantly.. Your father and mine got this at the normal age for men . I was early at 53.. just be aware .. You don’t need full exams . A simple PSA blood test is easy after 40 . I was unable to be near my dad when he had pc . So cherish him . Take care Scott
The ant parasite group of medicine, bebendazole (fenbendazole, Mebendazole and Abendazole) has got anti-cancer properties. It specifically makes Doxetaxel works better. There are already two confirmed case studies. And lots of data. Just read up Abendazole and prostate cancer, a lot of reading comes up.
I am using it for the last month. Have stopped my Casodex. But I must admit my PSA was very low.
Warning: When you buy your Valbazen, make sure it contains only Abendazole and nothing else. Drink it with your meals, it likes fat, better absorption.
If you have an open minded Onc like me, asked him to prescribe it as a second line treatment next to your Lupron or Doxetaxel.
Do it. Dare it. Don't just read this and other research but you don't go and do it.
A .22 in the hand is better than 45s in the safe. The same with medicine. Get the stuff in your stomach. Stop waiting for your cancer to go away.
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Out of options.
Are there any options s being tried bypassing the ADT resistant first route?
Considering options regarding salvage radiation.
Treatment options for metastatic prostate cancer? 
IRE-CT as a probable option
