Besides checking the PSA which is not a very good indicator of how the disease is progressing, does anyone have any thoughts about checking the circulating prostate tumor cells after 4 to 6 rounds of Docetaxel to check effectiveness. Mayo does this test.
Some of you may know that I have gone to the Mayo clinic to see Dr. Kwon. After 10 years he states that there is no disease above my belly button however I do have oligo metastatic disease below the belly button.
Currently on Lupron, prednisone, docetaxel and neulasta. I seem to be weathering the chemo pretty well and the PSA for what it’s worth has gone down from 51 to 31 after the first round of chemo. Any thoughts would be appreciated. I know this doctors methods are controversial but he believes that he can cure me and I have already read extensively the pros and cons. You all of been very helpful and I appreciate you all!
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wpopomaronis
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I think he is a good doctor who has helped many people somewhat outside of standard of care. He is a wonderful speaker. I love his presentations and that English was his second language.
Our relative who sees him had a completely different course of treatment than my husband but they both ended up without their prostates eventually. Both still standing but my husband about 5 years ahead.
We would have stuck with him but ran into insurance won’t pay problems with his scan and were forced to find alternate. Eventually paid.
I wish Mayo would get onboard the latest and greatest PSMA scans, etc. They seem to lag. For example, no laparoscopic RP when it was being done at Henry Ford in Detroit and in Florida and France years ahead.
No mychart/epic association until this year finally.
They’ve got some real nice buildings though. But we have had to wait two hours to get in there as well. At least they had jigsaw puzzles in the waiting area and we enjoyed their skyways and tunnels.
We went there to get into a trial in the urology dept and were told to go home and get standard of care locally (Minneapolis then). Like my husband used to say after 41 years on his job they are living on their reputation.
I had an excellent experience at The Mayo in MN. I was there for my surgery and continue to go there once a year for scans and screening through their Urology Department. The whole experience was incredible. I did not work with Kwon however because he handles the recurrent cases. I landed in the hands of a very skilled surgeon (Jeffrey Karnes) whom specializes in prostate cancer and glad I did. He performed surgery on me that several other doctors told me was not possible. Lots of details to it and can read my profile if interested.
I had HT from the start and 6 rounds of docetaxel within a few months of being diagnosed. The evidence after my surgery showed that chemo along with the HT took care of almost all of the cancer in lymph nodes. Doctor said nodes were basically scar tissue from where cancer was.
Chemo is a cancer killer and will get into places other treatments cant. I believe it took out the cancer cells outside of my prostate and the surgery completed the mission. Time will tell but so far I remain undetectable with no evidence of disease.
If you have had bone mets, bone alkaline phosphatase may be a better measure than PSA alone.
I'm sorry, but there is no evidence from randomized trials to support that anyone can be cured of metastatic prostate cancer. There is a big difference between DETECTABLE mets and UNDETECTABLE mets. Men can still die of mets that are never detected. You can live with prostate cancer as a managed disease for a long time, however.
My alkaline level was the trigger to getting me to the oncologist it was 900 when my General practiner decided to do my scans that found the Mets in my bones. Always recommend a full blood panel to everyone I talk to.
Tall_Allen - Been down the road of disagreement with you before and I know where you stand with anything outside of a randomized trial. There are men, even on this site that have not fallen on the bad end of a randomized trial. There are exceptions to every rule and who are you to say that anyone cant overcome this. To me that is as bad as a doctor putting a time stamp on someone. I guarantee Kwon and others in this field have seen and witnessed things you will never understand. Just because it didn't make it past a trial doesn't mean it's impossible. If we lived only what was "proven" no disease cure would ever be found.
Hope is a powerful thing, sometimes more powerful than we know. Some of us dare to defy and others can wait around for something to happen. Sometimes you have to make your own luck and not rely on the rest of the world to decide your fate. If things go bad there is certainly no harm in looking back and saying I exhausted every avenue I could whether proven or not.
What I wrote is "but there is no evidence from randomized trials to support that anyone can be cured of metastatic prostate cancer." That is true. Until it is proved in a randomized clinical trial, there is no proof. If Dr Kwon or others are sitting on incontrovertible data, they would share it with the MEDICAL community.
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Postoperative Circulating Tumor Cells
PSA response on Docetaxel
Cabazitaxel Versus Docetaxel
Docetaxel, Chemo in general
Update to Can't treat what we can't see
