I almost didn’t go to LA. Within days of starting BRAF/MEK last September, I began to feel better. No more exhaustion. I could eat. Few side effects and a general feeling of wellness, like something was working. And ‘bonus’ there were less doctor visits, no regular infusions, less pokes and prods. I just had to pop a few pills on an empty stomach 2x/day. Subsequent scans indicated George Costanza’s archenemy, ‘shrinkage.’ In other words, the treatments was working. The cancer that started creeping back at the end of June was put on hold again and life returned to ‘normal.’
The problem is I’ve never been that great when things are too good.
And while 70% of people with Stage IV melanoma react positively to new medicines I have been on, Dabrafenib and trametinib, the honeymoon doesn’t last for the majority. There are few “durable” results. Median response is 24 months. So I could not reasonably expect for the new treatment to last forever.
I knew that going in. My plan had been to start investigating different medical interventions as soon as I started the treatment. My thought was I could then put this combo on the shelf while trying something new. We could always return if needed as a last resort, before I blew the tires or exhausted the combo altogether. I discussed this idea with my local oncologist and he agreed.
“But then again,” he said, “conventional cancer treatment would suggest that if a current treatment is working you stick with it.”
Translation, just keep flapping those wings Icarus!
Icarus was the son of the famous craftsman Daedalus in Greek mythology. His father was the creator of the Labyrinth, a huge maze located under the court of King Minos of Crete, where the Minotaur, a half-man half-bull creature lived. In order for the secret of the Labyrinth to be kept, Minos had then imprisoned Daedalus and Icarus in a tower above his palace. Daedalus managed to create two sets of wings for himself and his son, that were made of feathers glued together with wax. He taught Icarus how to fly and warned him not to fly too high, which would cause the wax to melt, nor too low, which would cause the feathers to get wet with sea water. Together, they flew out of the tower towards freedom. However, Icarus soon forgot his father’s warnings, and started flying higher and higher, until the wax started melting under the scorching sun. His wings dissolved and he fell into the sea and drowned.
Most instructive but not necessarily easy to practice when you find yourself flapping through cerulean skies with a Rocky Mountain view. I mean why not wait?
Thankfully, call it inspiration/an amazing sense of timing/a kick in the pants/an extra shove in the right direction for a simple moron/I-dunno-know-what, but the following post wound up at the end of my nose a mere 24 hours after entertaining that ‘wait and see’ attitude. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/11/ive-repeated-it-endlessly-if-you-have.html.
The gist is, in Lelanglish, if you have melanoma is GO SEE A MELANOMA EXPERT. There is a good study associated with the post to back that sh– up. Bam!
It makes sense really, the more you grok it. A general oncologist probably sees a few melanoma patients a year. An expert, or someone who specializes in melanoma in this case, sees melanoma patients all day, every day, 50 something weeks/year. He is attending the conferences, working with the drug companies, teaching the classes, doing the studies, living the life. Is this akin to the diff between a general practitioner who set a few broken bones in residency and an orthopedist? All I know is, if I break an arm I am going to the bone doctor. Same logic here.
Needless to say I went to see my old buddy and melanoma expert, Dr. Omid Hamid at the Angeles Clinic, in Los Angeles last week. Its sometimes can be an amazing experience when things are done the way they are meant to be. The ticket was cheap. The appointment was on time (miraculous!). The advise was likely priceless and potentially life saving. LA was fun and as always, an experience. Best of all we have a new treatment plan that hopefully will not involve me flying blissfully off into the sunset before somersaulting miserably into the ocean.
So that’s my unsolicited advise for the week to anyone with a tough diagnosis. I think the same principles apply to edgier medical cases, melanoma or otherwise. Its cliche but knowledge is power. Sometimes we have to get off the duff, not wait for things to go bad, and go get it. If someone heeds that message and takes the extra time/expense/effort that saves his/her life, hopefully that makes up for 3 months of silence here.
Merry Christmas, Happy Hanukkah, New Years and Holidays!
PS. Thank you to my family Martin and Cherie and the boys for your mitzvah in LA.