Wednesday, June 3, 2015

Clinical Trial, Try 2

At the end of January, after being told that my lung tumors were "too small" to proceed with the immunotherapy clinical trial, I had another CT scan.  The radiologist's report did not go into much detail about the tumors in my lungs.  Many general terms were used instead of specific measurements and locations.  An "interval development" was noted, but after reviewing prior scans, Patrick determined that this "new" node had been there for quite some time.  It is located among the branches of several vessels, and so it was difficult to distinguish on earlier scans (it was smaller then) without knowing exactly where to look.  In January it was nearly 2 cm across and unmistakable.  In keeping with my naming convention, I dubbed this not-so-new node "Jose", for St. Joseph.

We began measuring the other nodes, particularly the ones that were nearer the outer edges of the lungs where they'd be easier to remove.  It appeared that Jorge had grown enough for the purposes of the trial.  I eagerly mailed the disk along with the radiology report off to the National Cancer Institute in Bethesda, hopeful that the doctors there would reconsider my case and accept me into the trial.

Nearly a year before this time, I had completed twelve rounds of FOLFOX with 5FU.  I was not put on "maintenance chemo" when treatment ended because my scans and labs had pointed to disease stability, if not outright cure.  I had enjoyed ten months of chemo-free days, however, with December's news of metastasis, my oncologist was eager that I start some sort of chemotherapy.  I was able to hold her off with the fact that the trial I was pursuing required a one-month "wash out" from cytotoxic meds before the trial could begin.  The trial depended upon live tumor infiltrating lymphocytes (TIL), which the researchers expected to find in and around the lung tumor.  If chemo were given too close to the time of surgery, we risked harvesting a tumor with no useable TIL.

Ever-vigilant, my oncologist ordered an oral chemo drug, xeloda (zeh-LOH-dah), that she wanted me to have on hand so that I could start taking it soon after surgery.

Xeloda is the brand name for capecitabine.  My understanding about this drug is that it becomes fluorouracil (5FU) after ingestion.  It is not without side-effects, some worse than the infused form.  Given the opportunity, I'm sure I would've dragged my feet profoundly over getting the prescription filled, but I didn't have that luxury.  Someone from a specialty pharmacy in Maine called me that afternoon to confirm the date on which the shipment of xeloda was to arrive.

Pharmacy:  I have a prescription from Dr. [oncologist's name] for you?

Me:  OK.

Pharmacy:  I need to double-check your insurance benefits.  Are you aware that your responsibility for this medication will be $890?

Me:  Wha-a-a-t did you say?  Is that for a year's supply?

Pharmacy:  No ma'am.  That is for one fill.

Me:  So, medication for two weeks, is what she is saying.  I don't think I can agree to this.  Is there a generic form available?

Pharmacy:  I will call your provider to find out if she will accept a generic.  It appears that the box for generic is not checked.  Please stay on the line.

Me:  Oh, I am hanging on your every word.  Trust me.

Pharmacy:  Good news!  Your provider OK'd the generic.  Your responsibility will be $10 per fill.

Me:  [faint]

The prescription arrived, all 106 tablets of it (but I think it should've been 105).  The instructions read:

The bottle of pills would sit in my medicine cabinet at least until I learned whether or not I was accepted into the trial.  I wondered how long that would be.

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