Changing Drugs Before I Even Started

Friday started with me calling the pharmacy at SCCA to find out what the issue was. 

I was asked my name, and who called me.  I told them “Phil.”

“Oh, he isn’t in yet.”  Pause.

“OK, can YOU help me?”

“What was your name again?” 

I was told that my insurance would only allow for mail-in orders.  I replied that that was not technically true, that my insurance allowed a 21 day supply from a retail pharmacy and would prefer that I used their mail order system.  Then I was told that the pharmacy didn’t have Tasigna, and they were going to have to order it.  Ok, when would it be in?  They would call me back after checking. 

Next I went online just to see if they covered Sprycel (the third drug available but not approved by the FDA quite yet).  I found in on the list of approved drugs from Medco, then called them just to be really sure.  I asked them specifically if they would cover this as a first drug for me.  Since it isn’t FDA approved, sometimes they will only cover it if you don’t respond to the approved drugs.  But no, they would cover it.  I then went back to looking at the online information about it, and noticed a small asterisk. 

When you clicked through, it brought you to a new area of Medco called Accredo.  A specialty pharmacy for patients with cancer, MS etc, who were on unusual drugs.  This specialty pharmacy had some neat extras, they overnight all the drugs for no extra charge, and give you any supplements that you need to take them, at no extra charge.  So if you were having to inject yourself, the needles and syringes were free.  Pretty nice!

So I called Accredo to ask about how I got my prescription to them.  And they were so nice on the phone.  Told me all about it and gave me the address to send the mail order prescription to.  They will call to set up a time for delivery of the drugs and whether or not it needs to be signed for.  OK!  This will work for both Tasigna and Sprycel.

But something is telling me that Sprycel is the drug I want.  I cannot explain it, I just know.

Next I call back the pharmacy to see when the Tasigna will be in.  And I am told on Tuesday.  Mind you, getting this information is not as easy as it sounds.  I call to the pharmacy, someone answers.  I tell them my name and that I was waiting to find out when my drugs would be in.  They ask me who called me, I tell them “Phil”. 

Then they say, “He’s not in yet.  He will be here at 10.”

Pause.

“Can YOU help me?” 

“What was your name again?”  Edmiston. 

“Let me see.”  Wait two minutes.  “Ok, they will be here on Tuesday.”

This presents a problem for me.  Dr. Vivian has set up three appointments for me based on me already being on the drugs.  So I email her nurse.  SCCA does have wonderful availability to their patients.  You get a huge pile of business cards with everyone’s personal number on it and their email.  So I send her a note that asks what I should do, I can’t get the Tasigna until Tuesday, is there anyway I can switch to Sprycel, should I reschedule my appointments…..

Then I just put my head down.  Trying to fight the system is tiring, especially when you have to fight the disease as well.  I am so focused on getting the drug to start the treatment.  That seems like the end goal for right now.  And I will do everything I can to make that happen.

I figured that I would have to wait a while for an answer.  So I went mushroom hunting with Kate.  We get in the truck and head out for the Federation Forest, which is off of route 410.  I know how to get there, but I miss the turn off and end up on the highway.  Instead of just turning around and getting on the right road, we go for an hour long adventure, looking for the way around the river.  Which gives Dr. Vivian a chance to call me on my cell phone!

Everything happens for a reason.

Dr. Vivian is, I think, ticked off that her own pharmacy doesn’t carry the drug she wants, and tells me that it is some contract issue, and that she had taken steps to prevent this from happening again.  As her first “just diagnosed” patient in a while, there may be other things that I get to be the guinea pig on.  I tell her that that is fine.  And then we discuss switching to Sprycel.  I still can’t quite say why I think I like it better, but she agrees that the statistics look good, there is not really a good reason why I can’t start on it, except for the FDA approval, and will my insurance cover it. 

I tell her I already talked to my insurance and they had said yes.  She is so happy to have a client that will interface directly with their insurance!  And one who knows what is going on and can make decisions.  So she says to rip up the Tasigna order, and she will switch it to Sprycel, now she just has to make sure that the pharmacy has it.  She will call me back.

And off to the woods I go!  Kate and I have a wonderful time puttering around the forest.  We talk about my new disease and I am finally able to put into words, why I think Sprycel might be better.

On Tasigna, it has a side effect of raising your glucose. Mine is 124.  125 is diabetic.  Also on Tasigna, you cannot eat 2 hours before or one hour after taking it.  Knowing my obsessive mind around food, I can foresee this as being very very difficult for me.  When I am work, I tend to forget to eat, and to take my medication.  This might be a huge problem, you have to take the pills twice a day, 12 hours apart.  None of this is true with Sprycel.  Not that Sprycel doesn’t have it’s own freakshow of side effects…..

But back to the forest.

Someone else has been here before us and there aren’t any Chanterelles.  Except for two teeny tiny little buttons.  Sigh.  Sadly, I took them.  I didn’t want to leave empty handed.  Even though there are signs everywhere that say you can’t mushroom hunt in this particular forest.  Two tiny little mushies aren’t going to break them.

Mind you there are HUNDREDS of kinds of mushrooms everywhere!  Boletes, rushulas, puffballs, aminitas, angel wings and many unidentified ones.  Kate has a fabulous directory of mushrooms in her head, but there are so many of them we find some she hasn’t seen before.  There are thousands of mushrooms in this forest.  It is pretty darn cool!  A quiet walk through the woods with friend and dog, mushroom book in hand, stopping to try and identify different kinds of boletes.  There are some that stain blue when you handle them.  Very interesting, Blue is not a common natural color. 

We walked for hours it seemed.  But was only about an hour and a half.  Then we turned back and headed for home.  I just didn’t have the energy to keep looking and wanted to see if Dr. Vivian had called back.

No message from her on my phone.  So we just went back home, made some yummy chicken soup and had lunch and watched a silly movie. 

JR called and asked if I had seen my email.  Not yet.  Seems he had written the general manager of El Gaucho and thanked him profusely.  And gotten a beautiful note back! 

I told JR I would read it in a few, when the movie was over.  I had also made arrangements to go and see a $400 trailer that I have been dreaming about for camping.  The movie ended.  Kate went home.  I hopped on the computer to get driving directions when I noticed not only the email from JR, but a note from Dr. Vivian.

Sprycel was available at the SCCA pharmacy, and I could come and pick it up as soon as I wanted.  YIPEE!  I call SCCA, it is after all, 4:30 p.m.  Have I waited too long to find this email?  (I start to beat myself up for this one)  I finally find the right number for the pharmacy, and lo and behold they are open until 7 pm, although the nice lady says that they will actually fill prescriptions until 10 pm if you ask nicely.  Good to know!

Called to cancel the trailer viewing.  Called JR (who had been playing golf) to tell him that I was on my way to SCCA to get the drugs.  He asked me to wait, he was almost home and we could go together. 

Isn’t he wonderful???

So off to Seattle we go.  I am half afraid that even though Medco has said yes to the drug, that in reality they will say no.  I am also afraid that the pharmacy won’t have it.

We finally get there, and it turns out just fine, they have the drug, we have to wait because it hasn’t gone through the pharmacist yet (so even if I had seen the email sooner, it would not have been ready!), and 10 minutes later I am being handed my new pills.  I pay $20 for a 21 day supply.  And notice that the cost of 21 days supply (21 pills in all, you only take this once a day) is ………$5673.55.  Holy Crap!

That is $98602 per year. 

Thank GOD JR’s insurance just got rid of their $1M lifetime cap.  Because I will have reached the $1M in drugs alone in only 10.14 years.  YIKES.

The funny thing was, that once I got the pills, I all of a sudden became afraid of them.  No one but me can even touch them.  They are absorbed through the skin and if you breath the dust, it is bad.  So they live in a plastic pouch in their pill vial.  With a big sign on it: CAUTION: CANCER CHEMOTHERAPY. 

It’s odd, but I don’t really think of myself as having cancer.  But I guess I do.  Most of the time I keep expecting someone to call me and say, “Did you say Edmiston?  No no, Mrs. EMMINGTON has leukemia, not you.” 

But no one has called.