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Stem cell transplant fallout front and center in 2016 (Part One)

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Stem cell transplant fallout front and center in 2016 (Part One)

Euphoria over a myeloma free PET scan doesn’t make everything else OK. I’ve been struggling with post transplant side effects. Like many of you, bumps in the medical insurance road have bubbled up unexpectedly. Still plenty of drama to kick off 2016.

Drama? I answered a call from my local oncology office on Wednesday. The nice woman in billing asked me for information about our new insurance. New insurance? News to me!

Pattie deals with this type of thing every day at her job as office manager for Davita Dialysis here on the Island. Knowing who to call, she was on the phone like a flash. According to Cigna, Dr. Luke and 21st Century Oncology had notified Cigna that they’d no longer be working with them.

My wife was livid. “This type of thing happens all the time,” she began. “But customarily we get five or six months to straighten things out. Three days? That’s crazy!”

I like Dr. Luke, and his office is only ten minutes away. Would I be driving into Jacksonville (up to an hour each way) in order to get my weekly Kyprolis infusions?

The woman who called me didn’t know anything about it. We got her checking on their end. A half dozen stressful calls later revealed the mix-up: a new tax ID number had been filed for the 21st Century group of twenty clinics, headquartered five hours south in Ft. Myers, Florida.

The good news? I could continue to see Dr. Luke and get “stuck” at their local office. The bad news? It might take three or four business days to get everything straightened out, delaying the start of my consolidation therapy.

I guess the take away message is not to panic when insurance complications jump up and bite us. I can only imagine how difficult it is to try and get issues with Medicare straightened out.

The shorthand for my regimen is PomC (I’ve seen it abbreviated as Car-Pom-d, too), short for carfilzomib (Kyprolis), pomalidomide (Pomalyst) and dex. I have Pom and dex on hand, so my plan is to start taking 3 mg pom tonight, following it up with 40 mg dex tomorrow. A friend and fellow myeloma survivor, Nebraskan and retired physician, Jim Omel, insists that it’s best to take dex in the morning; he says our am metabolism helps get the most out of the misunderstood corticosteroid. I’ve always taken it right before bedtime, hoping to fall asleep before the dex starts kicking in, keeping me awake most of the night. Based on Jim’s recommendation, guess I’m taking Tuesday’s dex with breakfast on Tuesday.

My Kyprolis IV? With any luck at all, my weekly infusions should kick off by mid week.

I’ll delve into the fun post transplant/C. diff side effects I’ve been grappling with tomorrow. Like the insurance issues, unexpected complications remind me–myeloma or not–that I’m still recovering from the toxic effects of a pair of stem cell transplants last summer and fall. A new year doesn’t mean I get to quite my job as a full time patient. Can’t blame a guy for trying…

Feel good and keep smiling! Pat