DRUG H$LL

In my January 6 post, I talked about boarding the Big Pharma bus and how my journey was taking a turn down a road I am reluctantly following. To review: I am taking two new drugs: Afinitor (drug name "everolimus") and Aromasin ("exemestane"). I was under the impression that the Afinitor was NOT considered chemotherapy. I was wrong. Upon further researching, I found that it is indeed labeled "chemo," it's just supposedly more targeted to specific cancer cells than standard chemo (which pretty much kills everything).

I was able to begin both drugs right away because my oncologist gave me a week's supply of the Afinitor (although it was double the dose I was prescribed) and I was able to continue on Tamoxifen (an estrogen blocker I already had) until the Aromasin arrived.

So I thought all was well. I took the drugs and carefully monitored how I was feeling, hoping I would not experience any of the (absolutely terrifying) side effects that were listed in the drug description. So far, not a big deal. I have experienced stomach upset, loss of appetite, fatigue, and general loopiness -- but nothing that has kept me from average daily functioning.

Then I got a call from Humana, my drug prescription people. It seems I was being red-flagged because of the Afinitor order. The possibility existed that I might NOT be approved for the drug based upon my low-premium / high-deductible prescription plan with Humana. I was told that the cost of the drug was .... are you ready?..... $11,532.69 for a 28-day supply!! That comes out to approximately $412 per tablet. MY CO-PAY for this drug would be $2,600! I was asked if I wanted to go ahead and process the order and accept responsibility for this co-pay.

I was near tears. "Are you kidding me?" I asked the Humana rep. "Do you actually expect people to be able to pay this much out-of-pocket?" After a shameless rant to the poor Humana person, I apologized, told her that I knew it was not her fault; her name was Jessica and she was really very sweet and tolerated my rant with extreme patience. I then said that someone out there... not her, not me, but someone.... was making an obscene amount of money off the backs of "we the sick" in this country. Jessica agreed and sympathized. We mutually agreed that we were both in the system and could do nothing about it. She then said, "Humana has a finance department; they might be able to find you some financial assistance. Would you like me to begin that process for you?" It took me a brief 20 seconds to process what she had just said to me. I then responded: "WOULD I!? You bet, Jessica!" 

So the past week has been spent waiting for phone calls from Humana. Jessica put my claim onto the top of the "urgent" pile. I love Jessica for that. A few days later, I got a call from Carlyn (who happened to be in Ohio -- when I am on the phone with customer service people, I don't know why, but I enjoy knowing where they are when they talk to me); Carlyn gave me an update, letting me know that the Afinitor had been temporarily approved by Humana, PENDING my acceptance for financial assistance. I still wasn't out of the woods.

Today, I received a phone call from Tiffany (in Phoenix -- she enjoyed hearing that we were about to receive snow in the DC area). Tiffany was the angel of mercy blowing the trumpet of good news: I was approved for assistance. My co-pay would be 0 (that's ZERO) dollars. Amazing -- from $2600 to $0. 

So.... this has been a two-week excursion into drug hell. But ultimately, the news is good: the drug is approved and paid for and will be here in two days. My side effects are not great, but so far tolerable.

In the process with Humana, I found out from Carlyn that the foundation that is footing the bill for my drug is called Patient Access Network. I went to their website; it's a non-profit with HQ in Washington, DC. I plan to send them a thank you note; I might even deliver it in person because I would like to learn more about this organization. Meanwhile.... if you are ever feeling inclined to make a donation in my honor, whatever you do, DON'T let it be to one of those useless "walks for cancer awareness" or pink-ribbon organizations; let it be for Patient Access Network.

And let's hope this drug works! At $412 per pill, it oughta be the elixir of eternal life!!

Worry

A dear friend of mine posted the following on Facebook, just as I was sitting in my stew-pot of anxiety last week. It hit home -- hugely:

Worry is a waste of time.

It doesn't change anything.

All it does is steal your joy and keep you very busy doing nothing.

Well now, ain't that the truth!

The Bus: Driver or Passenger?

I am not sure why, but I use the metaphor of a bus for a lot of situations. For instance, when having a conversation about leaving this earthly plane, I often say something like, "Well, when my time comes, I would like to just get hit by a bus." This idea worked for me until someone pointed out that such a situation would create bad karma between myself and the poor bus driver, who would be overcome with guilt and remorse -- so much for that plan!

In my journey to overcome my cancer, if you have followed this blog from its formation, you will know that I am a proponent of natural therapies, and have tried to keep as far away from Big Pharma as possible. Since my initial diagnosis in the fall of 2013, I have prided myself on "being the driver of my bus."

After a visit with my oncologist today, my status has changed -- from driver of the bus to passenger. Which bus? The AMA-approved bus, the Big Pharma bus, a bus that travels a road much more heavily traveled than the less-traveled road I have been taking.

My C-T scan a week ago came back showing some signs of improvement in the original cancer sites; but it also revealed some new anomalies in liver and bone. For reasons that are very personal (and not to be discussed in detail here), I have decided to board the Big Pharma bus. This is not a happy decision for me, but will provide peace to my family instead of fear.

This means that chemotherapy might be in my future. But first, I am on two new meds: Afinitor and Aromasin. These are usually given together to try to force the body to overcome its seeming resistance to hormone blocking activity. Afinitor (scientific name Everolimus) is a type of drug that supposedly targets cancer cells more precisely than chemotherapy drugs. Aromasin ( Exemestane) is a kinase (enzyme) inhibitor. Using these drugs together is supposed to stop the tumor from making new cancer cells and cuts off the blood supply to the cancer.

Sounds perfect, doesn't it? Until you read the two-page list of side effects -- everything from nausea, mouth sores, cough (which I already have!) and diarrhea to rash, anorexia and hair loss.

But alas, I am now on the Big Pharma bus and no longer driving or choosing the route. Those side effects are just part of the road trip.

Some of you are probably thinking: Wow, Betsy must be so disappointed. Yes, I am. This is not the road I wanted to take and, quite frankly, it stinks. But then again.... I have been dreading my visit with my oncologist today, worried that she would say something like: "Well, look sister, you are in really bad shape. Ain't nothin' we can do for you. Go home and put your affairs in order." I did not get this message from the doc. I left her office thinking, "Well, dammit, this just might work." And she said, "Look, I could give you these meds plus chemo right out of the starting gate. But let's just see if the drugs themselves have an effect." So I will go back in three weeks and see how the blood work looks.

Keep those good thoughts and prayers coming.