Ampullary Cancer - there is hope!

garyFL Member Posts: 1
edited November 2022 in Rare and Other Cancers #1

For those who are new to Ampullary cancer - a few factoids I found.  I've been told it's not genetic.  It's simply very rare - a few thousand people per year in the US are diagnosed with it - and there's no known contributing or causal factor(s).  The treatment protocols are limited - Whipple surgery or some are trying radiofrequency ablation (RFA) to avoid the very serious nature of Whipple and then chemo and radiation.  Unfortunately, it's aggressive and for many the cancer spreads to the lymph nodes very fast (before Whipple), or after the surgery, chemo and radiation.  For some, a very vew - it doesn't.  This is considered a nasty cancer, one that's eventually very painful and there's very little in the public domain about it, and survival is not great.  My mother, who is 68 years old, was diagnosed with Ampullary cancer in Jan 2013 and had Whipple surgery in February.  11 out of 21 lymph nodes were cancerous and they were removed.  She began chemo and radiation - but was unable to finish due to extreme side affects.  Moreover, her doctors admitted there was no evidence of enhanced survival with the final treatment.  To be clear, my mom is also a breast cancer survivor (7 or 8 years ago) and has a very, very high pain threshold - but the side effects were absolutely unbearable.  In December 2013, after the surgery, chemo and radiation -- all the tests came back clear.  Before she visited me in Florida, she was given another test and was told everything was ok.  When she arrived in Florida, her doc called to say that after a closer look, a lymph node was swolen.  She went for tests here and in fact cancer was in a lymph node.  So, from January through May we researched everything imaginable about this cancer and other cancers in the GI area since Ampullary is so rare.  We considered numerous clinics in Mexico, contacted Cancer Centers of America (who wouldn't even talk to us because my mom is on Medicare), and we talked with the usual list of leading cancer hospitals in the US and some in Germany.  We spoke with professors, medical researchers, authors and definitely a few scammers.  We also looked at a wide-range of emerging and experimental treatments in Europe (Central to Eastern to Northern) as well as in Asia.  The absence of published results, consistent recorded evidence of success and any other rationale proof that a particular treatment protocol worked was terribly frustrating.  Finally, I found a book called "Beyond the Magic Bullet -- The anti-cancer cocktail, a new approach to beating cancer" by Dr. Raymond Chang in Manhattan.  What struck me was the elegant simplicty of his ideas and approach, AND, the number of patient stories on his web site with documentied progress or improvement with a number of incurable cancers.  So, we emailed his office (Meridian Medical Clinic on 30th Street) and arranged a call.  He described his approach by phone, which was consistent with his book.  In a nutshell, he identiifies treatments that have evidence of success, but usually in only 10% to 30% of patients who use the treatment.  Doesn't sound promising.  However, he finds several treatments, some are simply off-label prescriptions, some are supplements, some are more interesting (emerging, early-stage even unconventional) treatments and initiates them.   Key points that are important - 1) everything is evidence based - no hype or junk medicine, 2) these treatments don't interfere with each other and 3) while he is clear there can be some side effects to some treatments, my mom essentially had very minor issues and they definitely didn't compromise her quality of life the way chemo and radiation did.  And his approach is to add more items if this initial cocktail isn't working.  In our situation, we did what we felt made sense and was what we could afford - but this was also what Dr. Chang recommended.  We did have some other treatment options, but some required traveling to Germany (time consuming, expensive and stressful) and we settled on those treatments we felt were logical and suggested by Dr. Chang.  So, we made an appointment for our first visit in early June and the week before we went, another scan revealed the cancer had spread to 3 or 4 additional lymph nodes and her Ca 19-9 indicator was in the 80's, up from the 40's when only 1 lymph node was cancerous.  Anything below 37 for Ca 19-9 is considered normal.  She started treatments the first week of June and we returned the first week of July for the 2nd treatment.  The week before we went for the 2nd treatment, my mom had a blood test and her Ca 19-9 was in the upper 20's -- in the "normal" range!  Now, we know we're years and years away from being through this, but have Ca 19-9 go down so far, in one month, is better than going up.  And my mom feels great.  It's truly amazing, however, to have such a positive result in only one month.  I hope this gives someone hope and perhaps another approach to consider.  I respect that we all must find our own way, but I sincerely hope this is helpful to someone - I wish I'd found this book and Dr. Chang last year.