Time for Plans B and C
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Duke….try to take a closer look at our insurance thread:
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=22Additionally, our Linda reported on a webinar she attended:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=12094Hugs,
MarionPort will be installed Thursday, first treatment next Tuesday.
Aimee was amazed when I told told the surgeon I expected him to install the port properly rather than the ways some of you have had the misfortune to experience. I didn’t tell him how to do it, just what I expected. And as long as he did it right I would be satisfied. Doesn’t seem unreasonable to me. Took chest x-rays to get an “as-found” condition of my lungs and other parts. When I told him my platelets ran on the low side, he then ordered a blood sample.
Insurance rejected Nexavar but that was no surprise. Now have to get onc to appeal. Do any of you have suggestions on how she should prepare her appeal? Names of oncs who were successful would be a big help. Thanks.
What a tangle there is with hospital systems. I’ve been in the Lake Hospital system, the University Hospital system, and the cancer center is in the combined Lake Hospital/University Hospitals system. They are separate and unique and have their own databases, billings, and everything. Even the combined system has nothing in common with the two “parent” systems except that doctors may be in two of the three systems.
Duke
Duke,
Keeping you in my prayers as always…..and laughed out loud at the constipation comment!
Melinda
Ahh, the wonderful world of (Un)Affordable Health Care. The plan I got for 2015 which supports me locally does not have the Mayo Clinic in-network. Plus, the government web site is constipated (I recognized the symptoms.) and I could not complete an application today. Maybe it will be better at 3 in the morning.
Hey, how ’bout dem Browns? 7-4 and in last place in their Division.
Thanks for all the encouragement, it’s appreciated and needed.
Duke
Duke, I was on Folfox and went home with the pump. I had a love- hate relationship with it. I hated it at night because I was afraid I would pull it out which never happen and I loved it because I imagined it killing all the cancer. I’m sure you will be ok with the black bag it comes in but I searched high and low for something fashionable..you probably didn’t need to know that. I will be keeping you in my prayers. happy Thanksgicing.
Peace and hugs
LisaChoices…yup….choices are a good thing…usually. Duke…I will be thinking of you standing out there in the cold on Black Friday. I did that once and said never again. But, this is one of those times, that I think I’d rather be standing in line outside in the cold than where I’ll be, getting blood draws and a CT scan at Mayo. Gah….choices,….but neither of these are good. I want choice C….staying in bed and having someone serve me breakfast in bed.
)))Was also thinking back about getting meds approved through insurance. As I remember, when I met with the first oncologist here in town, they made some comments about getting this chemo approved….the GEM/CIS and not sure it would be approved. WHAAAAAT? I was flabberghasted. How could they not approve standard chemo? Well, it was approved, but I would not take no for an answer. Get Dr Alberts involved if the Nexavar doesn’t get approved. I’m sure he’ll deal with the insurance people on your behalf for the drug. I’ve heard of instances where it took several attemps even by the doctor involved to get a drug approved…..explaining to the insurance people just why it needed to be used instead of some other treatment.
Julie T.
Ha, Duke. Black Friday is one of those days I am glad I am Jewish!
Sorry but cute Teddy story I had forgot about:It was our first Christmas coming up. He asked me if I minded if he bought a Xmas Tree and I said heaven’s no. I never had one. After he picked out the tree and ALL the ornaments he asked if I would like to start a village and I, of course said oh, yes. We get back to our Apartment in downtown Milwaukee and proceeded to load the elevator and I mean load it. No one else could get in. On the way up to our floor he turns to me and says, “Boy, am I glad you are Jewish!” I said why? He says, very seriously, “If anything should not work out at least this time I can keep all the Christmas stuff!” Yep, that’s my boy!
Lainy, you’re right – options are a good thing. When you have a choice of one, then there is a sense of powerlessness, something I do not deal with well. Kind of goes with a Type A personality.
Getting health care professionals and insurance people lined up is similar to herding cats. There’s always one who didn’t get the message and you have to spend 80% of your time chasing after.
Getting ready for Thanksgiving and the Black Friday hunt. Already ordered the most important thing on-line but the adrenaline is starting in anticipation of standing in the dark/cold/snow/rain for three or more hours and then dashing like mad along with hundreds of others who are looking for the same things you are that the store only has five of. Heaven!
Duke
Duke, I haven’t had an experience with getting a drug approved by insurance that they don’t normally accept, but from some of the stuff I’ve read, it’s possible that if it is declined, then having your oncologist go to bat for you with the insurance company may get the job done. Maybe if your local oncologist isn’t effective in this, enlisting Dr. Albert may get more results.
Julie T.
Duke, Glad to hear you have a 2 pronged approach and if anyone can get this done it is YOU! They just don’t know who they are dealing with yet. You didn’t get the name Duke for nothing. Crossing everything I have even my eyes for the surgery of the port and that you get your desired choice of treatment. Wishing you a good Thanksgiving and you do have good things to be thankful for as you still have the 2 choices. I will be thinking of you as I dive in to the sweet potatoes and stuffing.
Got the CT scan results back. The current chemo treatment (carbo/gem) is no longer effective and I can’t keep to the schedule because of low platelets, so we’ve worked out a Plan B and a Plan C.
Plan B is to stay with chemo but a different drug – FOLFOX which is still a platinum-based drug and may affect my platelets. It requires installation of a port. Seeing a surgeon next week and then will set up a surgery appointment. The treatment repeats every two weeks. Appointment with surgeon is next Monday and then he will set up surgery appointment. Will also have to pack a pump since the chemo continues for 40+ hours after I leave the center. This is the one my onc supports but Dr. Alberts is concerned about the impact on platelets.
Plan C is to go with a pill (nexavar) twice a day, every day. This is Dr. Alberts recommendation. The problem with this is it’s not FDA-approved for CCA so the insurance company may not pick up the cost. But it is used fairly frequently when the other platins stop working or can’t be administered because of how they lower platelets, so this is not ground-breaking strategy. Local oncologist is submitting it to the insurance company to get it pre-approved so that we could go to it when the FOLFOX loses effectiveness or it hits the platelets too hard to continue. Local nurse said there would be no problem getting nexavar approved until I challenged her to get it done by Wednesday so I can keep my appointment since this is the treatment I prefer. She backed down and said it might not get approved.
The oncs and I are happy with the two-pronged approach. Now it’s a question of getting things in motion.
Duke
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