Happy Father's Day to you and yours . . .

because my crew no longer has a dad.

because it needs to be said and re-said and re-said until someone hears.  really, really hears.

Melanoma is a killer.  And sneaky.  It can show up anywhere.  In the case of my husband, it appeared in 2005, on the side of the middle toe of his left foot.  Just a small round pink spot.  Didn't look like anything out of the ordinary, just that it wasn't there before.

His doctor said it was nothing.  'Wait a month', and if it is still there we will send you to a dermatologist.  A month later, the dermatologist said 'wait a month', if it is still there, we will biopsy it.  A month later we knew he had melanoma.  They did Mohs surgery hoping to get clear margins.  They did. 

Fast forward to late 2007.  We decided to spend Christmas in Boston.  We walked and walked and walked.  Frank developed a blister under that same toe.  It went away as soon as we got home and boots were no longer required.  The blister came back when he wore the same boots in February, March and July.  Each time it healed as the boots were no longer needed.  But bells were ringing in my head.

We were sent to Moffitt and this time it was ulcerated melanoma.  Did they not catch it all the first time?  Did it spread to the new location or was it just a fluke that it was in the same toe.  No one knows.  Remember, melanoma is sneaky.  Before they removed his toe, they did a sentinel biopsy of the lymph nodes in his left groin to see if the melanoma had spread.  All clear.  They removed his toe and home we went.  He was now on a regimen of PET scans every three months.  Clear.  Clear. and Clear.  Then one day, he felt a lump near the biopsy site.  Back to Moffitt.  There were actually two tumors and they were caught in the scar tissue of the biopsy.

How did he have more cancer if they did a sentinel biopsy to make sure it hadn't traveled to his lymph nodes?  The best answer was that the cancer was already in transit but not yet there at the time of the surgery.  This time, they removed both tumors, and removed all of the lymph nodes, followed by two and a half months of radiation.  His next PET was clear.  We loved clear.

In March of 2010, the news was not good.  The PET scan lit up in his right lung. On April first, they removed the bottom lobe of his right lung.  Because it had left the initial site, it was now considered stage IV, metastatic melanoma:  life expectancy 9 to 18 months.  He was accepted into a trial but was scrubbed when two more tumors appear.  One on his left thigh, one on his right chest wall.  Both were topical and removed.  Clear.

Again, the PET lit up.  The cancer had seeded in two of the five holes used for the removal of the lung.  It was now growing between the ribs, inoperable.  They scheduled him for anti PD1.  He flunked his stress test.  He was scrubbed for anti PD1.

The next step was IPI.  Having been approved by the FDA in March of 2011, he started that June.  Three of the four infusions later, his body revolted.  The fourth infusion was delayed but the reaction had him in and out of the hospital.  Now we had to wait and see.  The October C-Scan was hopeful.  The December was a disaster.  Life expectancy: two to twelve months.  January was no better.  By his last visit in February, life expectancy was two weeks to a month.  He made it two days.

Why am I rehashing this?  For two reasons.  First, to make sure if you read this, you get checked.  I don't want anyone else losing a father . . . or a mother . . . a sloth.

Secondly, because my new friend Les, who is now 32 months into stage IV metastatic melanoma is happily 18 months with no evidence of disease.  She is a soldier and she is winning.

BUT.  and I quote from her blog:

"New trials for Melanoma NED patients....

...are almost non-existent!  While it is obvious that Stage IV melanoma patients with non-resectable disease are in immediate need of treatment....it is equally clear to me that if you don't treat the Stage IV NED melanoma patients, they will soon join the crowd!  When I began the trial I am in...there was absolutely nothing else available to me.  And once again...as my trial begins to head down its final stretch, there is very little out there for folks in my shoes.  Much of this deficit comes from the fact that when you treat me....what have you learned?  My results are hard to calculate....and hard for drug companies to sell.  I did not have measurable disease at the start, so no one can tout a grand success story of decreased or eradicated tumors that show up on scans one minute and recede in the next.  Additionally, there is no "standard of care" treatment option for NED patients other than interferon and you all know what I (as well as most of the entire melanoma research community) think of that by now.  SO.....what to do???  Unfortunately...most of the drug companies...who are (sadly) the main drivers of such research...say...not much."

This is  unacceptable.  Intolerable.  It makes me crazy. 

Get checked.  Stay out of the sun.  In my husbands case, he most likely inherited the genetic mutation.  His father also had melanoma.  Caught early, it is treatable.  My father-in-law won his battle.  If you're in the fray, fight hard.  Look at Les!  She is a star!

End of rant.  Sigh.