After just one year my advanced PC that was being treated with Lupron and Apalutamide has now progressed to additional bone sites and lymph nodes. New sites are undifferentiated. PSA remains undetectable.
Started docetaxel plus carboplatin at DFCI in Boston yesterday. I'm told I will be on chemo for the rest of my life which will not be long given the aggressiveness of my cancer. Lucky me. I setup treatment option calls with MD Anderson, Memorial Sloan Kettering, and Johns Hopkins. Excellent response from MSK and Dr David Solit, with several creative ideas. He proactively spoke (with my permission) to my DFCI team.
For the past 2-weeks I hiked over 100 miles up and down the White Mountains and continue to feel very good in stark contrast to what is going-on inside.
So here I go down this next path: angry, frustrated and scared for me and for the people I love.
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PeakClimber
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That’s some strange cancer you have that you’re on chemo for life and currently undetectable. Hopefully the Docetaxel works it’s magic and shrinks the metastases.
I’ll be exhausting Jevtana for as long as it takes to reduce the cancer and have tolerated it quite well so far.
With all the talk of BS treatments on this site lately, I’m going to dare throw this out there. Baking Soda.
I started taking 1/2 teaspoon of baking soda 4 times a day after reading that it could improve the effectiveness of chemotherapy. It’s completely safe as long as you aren’t raising your sodium levels.
There’s also research showing similar benefits when antacid drugs are taken as well.
TA thanks for asking about the liver, one of the bright spots with no issues. Yay!
I’m told I am number one on waitlist for a Relay Therapeutics (Cambridge MA) phase one clinical trial Federal: clinicaltrials.gov/ct2/show.... It’s an SHP-2 inhibitor. Lots of complexity there including stopping the chemo in favor of many unknowns...
It looks like an interesting trial. Do you have one of the mutations (KRAS, BRAF or MEK) it was developed for? My friend, who had a highly undifferentiated subtype, responded a little to Jevtana+carboplatin. I wish we had tried something like this earlier, while his liver could still tolerate it.
PC: has your ALP or any inflammation markers such as CRP tracked the development of undifferentiated PC? With PSA n/d and metastatic progression I assume it has been labeled neuroendocrine PC. I hate to read in your bio that you were not given PSA screening by your PCP like many of us on this site, damning of our healthcare system. I hope things turn around with chemo and you get into the trial. Best of luck and keep up the physical activity.
I'm over my head on this so forgive the novice reply. Neuroendocrine has not been mentioned. The genetic alterations observed were not entirely specific of a
particular tumor type or primary site. The immunophenotype suggests a gastrointestinal origin. Although a gastrointestinal origin cannot be completely excluded based on the genetic findings, the presence of a SPOP missense mutation makes a metastatic prostatic adenocarcinoma more likely.
Why would your psa be undetectable and you have Metastasis? I’m confused!!! Isn’t the psa the thing they really keep an eye to determine exactly how stable one is?
Eventually, for some men it is many years, but eventually the cancer cells mutate. In some cases they mutate so much that they no longer look nor act like prostate cancer. So they don’t emit PSA. My mutated cancer cells are so extreme that in the lab and in the molecular studies they don’t look like they originated from anywhere. So they call them undifferentiated, cancer that doesn’t look or act like prostate (or any other). That’s my layman’s understanding.
And of course no idea why right? It sounds like your doing everything right and still... I have said a prayer for you and yours. Keep hiking, keep fighting!
In his text on IP6 Dr. Shamsudin describes how these cells were normalized by doses of IP6. I personally experienced cell normalization from IP6 in 2015. See my previous post for a discussion of Dr. Shamsuddin and IP6. His book is available through Amazon. Private message me if you are interested in taking IP6 powder.
so sorry, hoping for the best for you. don’t lose hope, though. there are stories on here about vaccines in india (and other locations) that have extended life. have you already gone down the immunotherapy path?
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