Radioactive

Cancer Dies Here

In My Bloodstream: Same Old, Same Old.
On The Stereo:These Days, Glen Campbell

We began our clinical trial way back, on October 31st, 2013.  We have discussed, over the past year, the problems of acceptance into the program and the consequential side effects over the trial period.  We had multiple visits to the ERs in Fort Myers and in Tampa.  In general terms, life was not hell, but we certainly had a better view of it than most.

Specifically, we suffered, at varying times, fatigue, dry, flaky skin, diarrhea, constipation, nausea, diminishing red blood cells, low white blood cells, fevers, heartburn, muscle and joint pain.  The most debilitating and dangerous, was severe pancreatitis.  It came often and its pain was absolutely crippling.  Some of these issues just had to be tolerated, while others required additional medications.  Some of those meds caused additional side effects, and they, too, demanded other, counteractive, meds. There were few good days.  Knowing, after several months, that the drugs were finally performing their job, made the daily battle worthwhile.

After multiple visits to the Clinical Research Unit (CRU),  where we had a blood draw every two or three weeks, three infusions of ipilimumab (Yervoy), 22 infusions of the trial drug,  nivolumab, regularly scheduled  CAT scans, MRIs and PET scans, the trial was over.

Follow-up visits, with scans and blood testings continue to this day.  Only one hiccup occurred a month after I was pronounced cancer free. Two lymph nodes had rapidly enlarged during the period between scans.  Further tests proved them not to be the result of melanoma, but a manifestation of lymphoma.  That would be devastating to some, but after defeating stage 4 melanoma, this was to us, wonderful news.

The new test drug was approved by the FDA at the conclusion of our trial, and is now marketed as Opdivo by Bristol Myers Squibb.  Stage 4 melanoma used to be a death sentence.  Due to science, research, and the outstanding work by dozens of healthcare professionals at Moffitt, cancer patient volunteers and other facilities, people like me, have a chance to extend their lives.  There have been a number of media stories about the incredible success of immunotherapy treatment, one dubbing our trial group as "super survivors".

All of us were in the late stage of melanoma with a life expectancy under a year.  All but one survived and are, to my best knowledge, still alive.  I was told that one gentleman, older than I, did not report his bout of pancreatitis, and died.  I cannot verify this to be factual, as confidentiality blankets most everything medical.

I have been asked by friends, what my new life expectancy might be, and, unfortunately, I am unable to retrieve the status of others in the program.  I would bet that most of us would agree to being contacted, so that we could enjoy the stories and progress of others who fought the same battle, albeit in a singular and independent setting.  Under the FDA approved treatment, the Opdivo portion is limited to infusions of a single digit.  I had been given twenty-two.  I am certain that tests and approvals will continue and will improve.  The good news for new patients is that they will not be administered those additional infusions given the trial participants.  Their path to becoming cancer free will not be as difficult.

I you would like to read one of the articles of the trial, go to:  https://www.wsj.com/articles/cancers-super-survivors-how-immunotherapy-is-transforming-oncology-1417714379

I have struggled with stage 4 melanoma and life for some twenty years, since my first diagnosis.  Every doctor and cancer specialist with whom we have been involved has advised us to take whatever  treatment was available, and hang on.  We have been able to do just that.  Something will come along. There are daily discoveries and at some point, there will be a breakthrough.  It will be "the one".

We have received radiation treatments and struggled with their well know side and after effects.  We have taken chemical cocktails that were so toxic that death appeared more like a friend than did life.  Their physical and mental damage were uncompromising.  We have received the prayers of others.  And will always be thankful for them.  Our friends have given us hope and love.  Again and again.  We have fought consistently, with tenacity.  My love of my girls and their families gave me the courage to fight.  My profound love for my bride and the concern of leaving her behind and alone was seminal in our struggle.

Kath and I had discussed, at length, my inevitable death, shortly after my melanoma prognosis in 1995.  We had agreed to fight with everything we had, until there was nothing further we could do.  Then it was up to God.  I was, and am not still, afraid to die.  It will happen to the best of us.  So I'm told.  Being told you have but months to live does sharpen your focus, however.

Then came, finally, the "something better will come along".  As promised, by our doctors, again and again.  Over years and years.  Over treatment after treatment.  After adventures and misadventures, home relocations, and market failures, searches for doctors, and some amount of luck, good and bad, we kept hope alive.

Then came our miracle.

Update:

The last month has had its moments, and I was, emotionally, a tad worn out.  We have been traveling, entertaining friends, dealing with head surgeries and spending Christmas with family.  Then, both of us came down with the flu.  That should not be an excuse for my tardiness.  I apologize.

Will be back, on time, next Monday.  Let me be the last to wish y'all a Happy New Year.