Although the sun was shining, I was in the basement of the UW hospital for almost five hours.
On another front: Not only does this clinical trial appear to not work, in addition to about 20 hours of my (volunteer) time, it's cost me hundreds of dollars in fees that my insurance company wouldn't cover because SCCA charges too much. SCCA never offered to reimburse the difference in cost.
Can you tell how frustrated and annoyed I am? Even pulling weeds for an hour after I got home didn't help. Rik was great -- he ordered a pizza, went out to buy Graeter's ice cream, called to find out what I wanted when the store didn't have mocha chocolate chip (I went for coconut chocolate chip), and sat through the first episode of Game of Thrones with me.
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Hi Jill
ReplyDeleteWhat a frustrating day--five hours????
Thanks for being in the trial tho--even tho this one sounds like a dud, all of the drugs we use today wouldn't be available unless people like you participated. Thank you! (It doesn't sound the treament center does a lot to encourage participation...)
It may well be too late for the trial you are in, but FYI, Driving Miss Darby provides some clinical trial reimbursement:
http://www.drivingmissdarby.org/Patient-Support.html
Take care
KOB
Where is that cancer card?? Make sure you contact the hospital ombudsman and yip at him/her. Write an email. Be a pain in the butt. And tell them you aren't paying for trial meds. If they want you, they pay all the way. Tell radiology you are immunosuppressed and can't sit around in a hospital setting being exposed to RSV and God knows what and that you need immediate attention. Put on evil eye and massive assertiveness interjected with a bit of whining.
ReplyDeleteAll I can say in response to this and the previous postings: damn, damn, damn.
ReplyDeleteFYI, I did not have to pay for the investigational drug nor most of the scans. However, because SCCA's charges to my health insurance company were higher than the same services at my usual provider, I have had to shell out more money than expected.
ReplyDeleteDouble damn.
ReplyDeleteTriple damn.
ReplyDeleteSCCA screwed up my lab orders last week ...
But can you let us know where you get Graeter's in Seattle? It's my favorite and I had no idea it was available here!
A fellow Cincinnatian? Yay?
ReplyDeleteGraeter's is available at Fred Meyer and QFC stores, although not all stores have all flavors (my favorite mocha chip, raspberry chip, chocolate chip, coconut chip, vanilla chip, mint chip, and plain vanilla without any chips).
My favorite is mocha chip! Thanks for the info ... Although it is somewhat dangerous to know where to get it. I'm already thinking that I need to stop by QFC on the way home tonight ;)
ReplyDeleteHi there,
ReplyDeleteI also have stage 4 bc with mets. When I read about your parking, I couldn't believe it. I have a handicapped parking placard and in CA, there is no charge to park anywhere with the placard. Have you checked into this?
Also, I've never heard of a clinical research trial where the patient had to pay for anything. When we are doing trials, we are guinea pigs, so the meds and other required treatment items are paid for.
Good luck to you and to all of us with Stage IV BC. The more we get the word out, the more we can start the ball rolling. Major organization was how the Komen Foundation got started and if there is a way to get organized and network, getting the word out, maybe, we too could get funding for our Stage IV problems.
Hugs to you and to us all!