Rowyn (rowyn) wrote,

Cancer Adventures

One of the things about cancer treatment is that you make plans, and then things happen and then you probably throw out that plan and try something different. And all of this is both expensive and unavoidable. Not necessarily expensive to the patient personally, because healthcare costs are beyond bizarre and well into surreal in this country. But expensive for someone.

Back in December, the plan was that the doctors would collect stem cells from him in the middle of the month, and then he'd get a megadose of chemotherapy at the end of the month.

Then he got pneumonia after the first two days of shots before collection, so the whole thing was aborted for two weeks. At the start of January, a pulmonary specialist saw him and said his lungs still showed possible signs of infection. You cannot give someone who has even a trace of infection a megadose of chemotherapy to kill everything in their bone marrow. Because that annihilates their immune system. Any infection would take over immediately.

So they couldn't start doing the transplant any time soon. However, they still wanted to do the collection now, because the more chemo you get the weaker your stem cells are, so this is a sooner-the-better situation on collecting stem cells.

Next plan was to collect stem cells in early January, put Lut back on normal chemo until the infection was provably completely gone, and then do the transplant in early February or so.

So in early January, while Lut had the out-patient surgery to place the trifusion line, I called the speciality pharmacy about getting him back on Revlimid.

I guess I never really wrote about Revlimid. Revlimid is a crazy-expensive chemotherapy drug specifically for treating multiple myeloma. The retail cost is around, I dunno, $800 per a pill. You take one pill a day, two weeks on and one week off. My insurance has a $12,800 out-of-pocket cap. (There are like three different levels of caps: $3200 deductible, $6700 treatment, $12,800 out-of-pocket. Lut has cancer. He hit them all last year. He will hit them all this year too). With most kinds of medical costs, you get the treatment whether you can pay for it or not. But pharmacies aren't going to send you $11,0000 in drugs without payment up front, from you or your insurance provider or someone. Fortunately, there's a grant program, Celgene, that will cover the out-of-pocket for Revlimid if your annual income is less than $100k.

But all this makes ordering Revlimid complicated and weird. I started the call before Lut went into surgery and I was still on it when he came out. Eventually, I finished, and arranged to have the Revlimid delivered to a convenient local branch of the pharmacy instead of to my house like usual (they do not stock $800-a-pill esoteric drugs at local pharmacies in general), because we were going to be out of the house.

The next day, Wednesday, we went to the apheresis center and they checked to see if Lut had produced enough stems cells to collect. He hadn't. He got more shots that night, including a different drug, and then we went back Thursday. Still no luck.

Nurse-coordinator: "Okay, we're going to abort this try. Do not start the Revlimid!"
Me: "Uh, should I pick up the Revlimid? Because it was supposed to arrive at the pharmacy this morning."
NC: "No, don't."

When I got home, Lut told me the pharmacy had called and said we could not pick it up. "They said it has to be sent to the house, it can't be sent to the pharmacy."

Me: "Well ... that's very weird. Maybe they got the memo that it was cancelled? We didn't want it anyway so ... good?"

Fast-forward two weeks, to Friday morning. Lut has tried and failed stem cell collection a third time. We get to try a fourth time next week, using a regimen three times as bad as the previous attempts. He is still not back on regular chemo to manage his cancer because they're still trying to collect.

I get a call from the Sarah Cannon Cancer Center, the place that prescribed the Revlimid. "CVS Pharmacy called and said your Revlimid is still ready for pickup."

Me: "... they told Lut we couldn't have it?"

SCCC: "... I got nothin'. They say now that it's been there for two weeks and they're going to send it back and destroy it if you don't pick it up. You might as well pick it up, Celgene and your insurer already paid for it regardless."

Me: "Well. Okay then."

And this is why I have $11,000 in cancer drugs that Lut isn't currently taking on my kitchen counter. We kind of expect he will be back on Revlimid at some point, although at this stage probably not in the next several months. Still, it keeps for a year and doesn't have any unusual storage requirements. So hopefully it'll be fine when he needs it. And it will save me from dealing with Revlimid bureaucracy for three weeks when the doctors put him back on it. I would rather the pharmacy had been able to just ship it to some other customer who needed it, but apparently once it's shipped anywhere it can only be given to the original patient it was prescribed for. Medicine has weird regulations, y'all. I don't even know who made that rule.

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Tags: cancer, medical care
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