Sunday, January 26, 2020

September 28, 2019 - My Chemo Story (Summary)

I was asked by several people to summarize my experience specifically with Chemo treatments and their effects.  This is my summary.  For those of you who have followed my blog, you already know most of what I am writing in this post, so I won't be upset if you skip this post and go to the next post which will be my first post in 2020.

My Chemo Story

I was first diagnosed with Advanced Stage IV Metastatic Prostate Cancer on Nov 11, 2016.  This preceded a 22 year history of fighting PCa starting with brachytherapy in 1996.  I have always been saddled with low PSA readings, so both a urologist nearing retirement and one just entering the field did not catch the move into the metastatic phase, so I lost several years to treat it.  My PSA has never been higher than 4 but the shortening doubling time leading up to 2.89 was the clue that my then new urologist needed to get me a PET scan. 

Being one who tends toward aggressive treatments for my illnesses, after a second identical opinion I decided with my oncologist to throw everything at it, including the standard protocol, diet change, and the taking of many supplements.  The medical protocol said that I should take 6 treatments of Docetaxel followed by hormone blocking, using a blocker like Lupron.  Instead, we decided to go with both chemo and Lupron at the same time.

Before making the final decision I had started with a low sugar, low carb diet with supplements like Saw Palmetto and Stinging Nettle Root.  This lowered my  PSA by 25% in a month and a half.   I also read at least one study that showed that Modified Citrus Pectin tended to enhance the effect of the chemo on the cancer.  When chemo started, I dropped most of the supplements and took 1500 mg of MCP per day.  About halfway through the chemo treatments I also read that AHCC (mushroom derivative) was being used in Japan in conjunction with chemo to lessen the chemo side effects.  There was no evidence of negative effects on the chemo.  I then took AHCC along with the MCP.

Early in the chemo treatments I started losing my hair, my nails turned yellow, and I had bouts of shooting pain seemingly all over my body.  Each pain attack would be in one specific area.  I lost my energy and started losing muscle mass.  I didn’t have the nausea that many have had.  When I added the AHCC, the side effects seemed to fade.  I lost less hair and the pain attacks seemed less frequent.  For this reason I tell those going through chemo to consider taking AHCC with the chemo to reduce side effects.  I’ll never know whether AHCC might have headed off some of the side effects like hair loss, but I suspect that it might have.

Within a few months my PSA dropped to .06, then to .03 with a more sensitive test.  At about the 18 month mark, I had another PET scan with a new isotope and there were no signs of new growth.  At that point, because the side effects from Lupron are nearly as bad as chemo, I decided to hold off on the Lupron injections to see if my natural supplements and diet could hold the cancer off.  6 months later I was tested and my PSA rose from .04 to .7 with a doubling time of about 4 months.  Unfortunately my regimen wasn’t holding the cancer at bay.  I went back on Lupron three months ago and will be tested in a week.

All this time my symptoms have been pretty tolerable.  In spite of my low sugar diet, my glucose levels are pre-diabetic, so I am taking Metformin, both to lower sugar levels and for its off-label use to help treat some cancers.  Lupron made me lose muscle mass, lose ALL sex drive, gave me neuropathy in my feet, gave me osteoporosis, and, according to my wife, has affected my brain function somewhat.  I do hate taking Lupron but I don’t want to die just now.

I have to thank Dr. Ramdev Konijeti at Scripps, La Jolla for ordering the PET scan and Dr. Munveer Bhangoo at Scripps for working with me on the treatment.

Les Briney

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