Posted by Steph in
Family, on Saturday, February 24. 2007 at
Posted by Scott in
Chemo Round 6 & Transplant, on Saturday, February 24. 2007 at
First, I call our Drug coverage company and they spend 20 minutes looking for Palifermin without finding it. As I was waiting for them to look up on their system, I decided to do a google search for it, and up came the trade name. Just for kicks, I asked them to look up Kepivance, trademarked by AMGEN. Bingo, it came right up. She told me what my copay was - $25. At this point, I was a little bit irritated that I couldn't find the generic for a $10 copay.
So, once I knew my coverage was in place, I called around to pharmacies. I struck out over and over at all of the speciality pharmacies I had ever dealt with. Called safeway, nope. Finally I decided to call Walgreens... They had it!
So, here's a quick summary of my conversation with the pharmacist
me: "Do you carry Kepivance"
PH: "Yes, IV, right?"
PH: "Are you sure you're covered for this, it's expensive. "
me: "What do you mean expensive"
me: "huh? You mean like with three zeros ?"
PH: "Yeah, $47,102.39 for 30 vials"
me: "Oh, my insurance company just said I have a $25 copy"
PH: "That's a good copay"
me: "Do you have it"
PH: "No, but we can have it tomorrow"
I knew we had pretty good drug coverage, with stipulations even for some forms of leading or experimental meds, but this is pretty amazing. Our clinician for transplant said she had heard that the medicine was $10,000 a dose. I've since read $2700/day on the internet if administered by a hospital. I've also heard that Asher should only require one vial per day.
As expensive as this medication is, it is said to significantly reduce the downstream costs and complications from severe oral mucositis because of less reliance on pain meds, and lessened stay duration in the hospital. Ultimately cheaper treatment in the long run.
Study 1: Study 1
Study 2: Study 2
As much as I complained about how little it helped for the first 30 years of my life, here's another opportunity to say TGFI (Thank God For Insurance) now that this ordeal has introduced itself into our lives.
Posted by Steph in
Chemo Round 5, Chemo Round 6 & Transplant, Counts, Scans, Tests, on Saturday, February 24. 2007 at
It was a full day today.
Asher and I were gone from 7:30am - 4pm.
He had LOTS of blood drawn first at clinic andv then the oncologist came in and chatted with us and checked out Asher (best he could, Asher wanted nothing to do with an exam today, all he wanted to do was go to the hearing test - he had been excited since I told him about it yesterday, going to bed saying he was going to listen to the birdies and froggies). The oncologist suggested that Asher might have had rotovirus which then passed on to the girls as quickly as it did, and probably why I never got it (although Scott got one part of the virus, so it seemed, as he and Asher both had symptoms when they got home last Saturday).
He said Asher's MRI came back clear, no tumors visible in MRI!
He said his counts are super! Going from memory as I didn't get a print out:
So, as far as he is concerned Asher looks great!
Then we went to the hearing test. Asher can hear more this time than last time, although I didn't get a printout here either, so going from what the gal said, "We'll keep tracking it to see." So maybe he's back to only being minus high frequency hearing, but I'm not positive on this, and how the tests work and how hearing is affected by chemo and daily stuff is really quite interesting.
Then we met with a doctor that did Neurodevelopmental Tests with Asher....I wasn't allowed in so I have no idea what she did! I wasn't even allowed to watch. VERY BUMMED about that! I guess the doctor played games and did puzzles and what-not with Asher. He didn't have much attention span for this, needing a break 1 hour after starting and stopping all together after 1 1/2 hours. He has to go back and do more on Monday. It is required in the protocol, Head Start III, that we track the results from these kinds of tests, that is why he is doing it. I have a BUNCH of paperwork to fill out on what Asher can or can not do, think, say, feel, whatever, that I have to turn in before he goes to transplant. I did most of it while waiting for Asher.
Then I was trying to get Asher to drink this 20oz (sport drink size bottle) of BLUE contrast for his CT scan. I kept treatening him to either drink it or he'd have to have a NG tube. That's fun. Part of being a mom and taking Asher to hospital tests....I hate threatening him but it WAS honest. He either had to drink it or we'd have to do a NG tube and then put it down the tube into his tummy.
When I first picked up the bottle of stuff, I told the gal at the desk there was NO WAY Asher would drink even half of that bottle. She said to get him to drink what we could. So, at check-in, around 12:45, a radiologist gal came out to talk to me and I said Asher MAYBE drank 2oz so far (after I found a straw to put in the bottle, that kept falling down into the bottle) and I was trying to get him to drink more from a sippy cup now. She said, "You're going to be here a long time then." Nice. Then we discussed a little of why Asher was getting a CT scan, and about him drinking 20oz of fluid. She said she has never had a problem with any cancer child, 4 years old or not, drinking 20oz of the stuff. I was shocked. Really, could my son be the only one who wouldn't drink that much in an hour, let alone half a day, only 2 1/2 weeks post chemo treatment and only 5 days post vomitting every day. Arg. THEN, this was the kicker, she told me he had to have the scan because they were looking for tumors in his colon before going to transplant. I said, he had a tumor in his brain. She said, yes, but his cancer is a spreading cancer. I said, sure to his spine and it is clear via MRI two days ago. Then I tried to tell her that he had inflammation back in September after infection in his head, etc etc....mind you, all out in the waiting area for other patients and parents to hear. At that point I just felt way to frustrated and stopped talking. There was no use in talking with someone that didn't even know Asher's case.
She said to let them know when Asher had drank 1/2 of the bottle and if I needed HELP to have the gal at the desk call for her. She went away then and I took Asher in the umbrella stroller for a walk. Went back to clinic, talked to the social worker to vent....also trying to get a hold of the transplant coordinator to confirm they were just getting a baseline to make sure had no inflammation of his gall bladder, intestines, bladder, or pancreas, and to have her tell radiology that. So....an hour later....Asher had all what he was going to drink (threatening me that he was going to throw up)....and it was probably 9-10oz of this blue crap (which, by the way, stunk, so unless it was in the sippy cup, he gagged every time he had to take the straw and try to drink), and he fell asleep laying on the chair next to me with his head on my thigh.
So, finally, Asher went into the scan at 2:30pm. I had to wake him up and when I laid him on the table he started crying, "I don't want a tube!" I told him he drank enough blue stuff and did great and didn't need a tube....then he was okay....he laid really still on the CT scan table thingy and I had to leave the room since I'm pregnant. It went okay, in the end. And, the transplant coordinator had called the radiology lady that had told me Asher could have a tumor in his intestines and gave her the REAL reason (the same one I told her) of why Asher was getting the CT scan and she then told me, "You shouldn't worry about any tumor." I thought, "I wasn't worried. I just don't think you should tell parents about their child's condition, you're not a doctor." I could tell she liked debate and I wasn't in the mood, so I kept my thoughts to myself.
Sometimes it is all a very frustrating process, and I so can't wait till it is over, as I am sure Asher is.
Monday will be another full day at the hospital, till then we'll have a good weekend.