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I_Promise's picture
Posts: 218
Joined: Aug 2011

The lovely world of insurance company denied my sister's second chemo agent Xeloda. My sister has an anaplastic astrocytoma with no mgmt mutation that would make it sensitive to Temodar. (well 25% of it is according to the pathology stain). The tumor analysis showed that it could be sensitive to Xeloda. Could is the word. Our neuro-oncologist is on board and wanted my sis to do both Temodar and Xeloda starting this friday. Well the word from the insurance company, who are just clerks in ties, not doctors: it is not indicated for AA, just brain mets.

Our Neuro-Onc wrote an appeal. My mom and I got ready to liquidate our 401K. When I spoke to the insurance company they told me that Xeloda out of pocket would around 4,000 a treatment. I got ready to take my sister to the bank to get a loan at my mom's suggestion. But then my mom, is a pretty smart lady. We looked at how much it would cost in Canada: 126$. Wow what a difference!

So our Plan A: wait to see what happens with the appeal. Plan B, fly to Montreal or Toronto, be seen by a NO, and get the Xeloda.

Now I think we are living in an absurd novel of Kafka when dealing with the bureaucracy of it all. Isn't it enough that our heart and souls are ripped apart without having to deal with money hungry companies?

Disease wise, we hit a bit of a respite: she feels good. I breath a bit better. We are about to have her take prednisone instead of the dexamethasone. We are leaving for a ancient pharaoh trip soon. A trip filled with adventure and amazements. Like my friend Cindy says: day by day. Living in the moment. Not obsessing about the future.

Although... I always planing the next phase of her treatment. Once we get the Xeloda and she tolerates it, I will be adding DCA (low dose 10mg/kg divided into 2 doses per day).

I hate this disease. I want it out of her head. 4ever.


Posts: 7
Joined: Jan 2012

Have you tried contacting the manufacturer to see if they can help you financially (drop the price). If the insurance company is resisting paying for it there's an incentive for the manufacturer to get your sister on the drug, prove its worth, and get wider acceptance for the drug. It wouldn't hurt to try and might be cheaper than traveling to Canada.

Posts: 19
Joined: Jun 2011

I found this on the manufacturer's web site: (xeloda.com)

Genentech Access to Care Foundation (GATCF)
Helping patients have access to XELODA

The Genentech Access to Care Foundation (GATCF) helps patients who don't have a healthcare plan to pay for XELODA. GATCF helps qualified patients receive their medicine free of charge.

GATCF is committed to helping you get our medicines, regardless of your ability to pay.
If you have no healthcare plan, or if your healthcare plan says it won't pay for XELODA, GATCF might be able to help you. You can work with your doctor's office to apply to GATCF for free medicine.
For consideration of eligibility for resources from the Genentech Access to Care Foundation, you must meet eligibility criteria, including income restrictions.

Please direct requests for application forms and more specific information on eligibility to:

Genentech Access to Care Foundation, 1 DNA Way, MS #858A, South San Francisco, CA 94080
1-800-530-3083 / fax 1-650-225-1366 or download the application form.

To speak live with one of our Specialists, call 1-888-249-4918 from 9AM—8PM EST, Monday through Friday, fax 1-888-249-4919 or visit www.XELODAAccessSolutions.com.

I also wanted to mention that you can mail-order prescription drugs from Canada and get them much cheaper. My parents order all of their maintenance drugs that way and they save a lot of money.

My 28-year-old daughter has a grade III anapalastic oglio in her right frontal lobe. She has surgery Feb. 2009 followed by nine months of Temador. Things were good until Jan 2011 when her MRI showed new growth. So she had 6 weeks of radiation. Her MRI on Dec 27, 2011 showed a larger area of enhancement. She started Avastin last week. Will hopefully know by March 2 if it's working. For the most part, she has a very positive attitude . . . wish I did, too.

cindysuetoyou's picture
Posts: 514
Joined: Dec 2009

Wow, what awesome tips! This site is so great for getting all kinds of help and good ideas. It sounds like there are a couple of different avenues to use to get that medicine for Kat. Great ideas!

Julia, when I read the title of your post--Bureaucracy-- my heart started pounding. I was still feeling emotional from reading Kat's blog about the crap she is going through with her insurance and her pharmacy in order to get Temodar. It upsets me so much when this kind of stuff happens. We aren't talking cold medicine here---Kat and David are fighting BRAIN CANCER. They should not have the added burden of fighting to get treated and get their medicine too. It's wrong!!!!

I had two minor (but upsetting) things happen like that recently. Neither one were that big of a deal....I just have a low tolerance for this kind of stuff. I have to take David in 2x a week to get bloodwork done. I took him to a clinic near my house that he's used before. He hasn't been in a while because he moved to Portland, but now that he's staying with me, we went back to that clinic. First off, I called our NO and made sure that they faxed the orders for the bloodwork. Then I dragged David down to the clinic. He was feeling really ill and weak from the chemo. The clinic said that they never got the orders. So I had to call our NO (never easy to do) and have them re-fax the orders, and we had to sit in the lobby while the clinic processed the paperwork. David was miserable the whole time. So we finally got the blood drawn and we left. That was on Tuesday. He needed to have bloodwork done on Friday so I called ahead and talked to the clinic. I made sure they saved the fax and that the orders were standing orders, not ones that had to be reissued every that we came in for a test. No problem. Didn't matter what time of the day or what day we came in, etc. So we go in on Friday, and they tell us, sorry, they don't accept David's insurance. I said you guys took it three days ago...what happened? They said sorry, our bad. No can do. I barely kept a grip. David was standing there looking like death warmed over, and I had to drag him to another lab. Unfortunately we never found one that was open and we had to wait til Tuesday to get blood drawn. I couldn't find a lab open on Mon. because everyone was closed for New Years. I was also frustrated because that lab would have taken Medicare if that was all that David had, but since he had another insurance, but not one they accepted, they wouldn't take Medicare either. So dumb.

After all that, David got a bill for $70 from that clinic. I called them and told them we would not pay it. I told them go ahead and bill Medicare. I said sorry, like you guys said, it's YOUR bad that you did bloodwork on him when you don't accept his insurance, and you can just whistle dixie for the money. So they said this time they'd make an exception and bill David's insurance. I feel so incredibly ugly about the whole thing. It's not really that big of a deal. It's just that people can be such idiots with how they deal with someone who is fighting brain cancer. You'd think they'd have their act together and they'd go out of their way if they needed to, to help someone in such desperate circumstances. I told myself not to waste my energy by being upset, but I cried angry tears when I was alone later that day.

The other thing wasn't that big of a deal either, but I just can't handle the stress about getting medicines. I took David's prescription in to our pharmacy for a refill early in the day, and when I went back several hours later, they told me that the original pharmacy never called them back and now they were getting ready to close. I got hardcore with them and said WHY didn't you call and let me know so I could have called that pharmacy myself? I was visibly upset, and the head pharmacist came over and listened to me and then he personally called and got it straightened out and I got the prescription and left. I cried that time too, in front of the pharmacists. I think I made them feel bad....good!

Anyway, I understand the anger and frustration that you feel. I hope you can get the Xeloda without any more trouble. And I'm so glad to hear that Kat is feeling good! Can't wait to hear about your trip to Egypt--I hope you guys post lots of pictures on Facebook! Have a WONDERFUL time!

Love and blessings,

Posts: 7
Joined: Jan 2012

I have many similar "service" related stories and aggravations. On the whole, we have been very pleased with the level of service my wife has received, however there are certainly pockets of bureaucracy that make me tear my hair out on occasion. My complaints center primarily around getting Temodar from Curascript. I have nothing good to say about them. We are forced to use Curascript by my insurace carrier, the only one they approve purchasing the drug from, and so I regularly call them to file a complaint when I have a problem.

However Curascript has not been the sole problem. Just four days ago we had a snowstorm on the same day my wife's temodar was due for delivery from UPS. We only got 3 inches of snow (a mere dusting around here) but that was apparently enough to prevent the UPS delivery guy from getting out of his truck and walking 50 feet to my door to drop off the package. The drugs are consistently delivered in the morning, so when they had not arrived by 2pm I knew something was wrong, AGAIN. Called Curascript and they confirmed the drugs had been shipped. Called UPS and discovered that the package had been "missed" and had been rescheduled for delivery the next day. I told them that was unacceptable and my wife was scheduled to take the drugs this evening. I assumed "missed" meant that the package had never been put on the truck for delivery, but it turns out that the package was indeed on the truck, the driver just hadn't delivered them. I then realized that I hadn't plowed the three inches of snow off my driveway yet which is when I also realized this UPS guy just didn't want to walk through 3 inches of snow. Probably a union thing right? The driver said he would come back to within a mile of my house if I went down to meet him. I told the dispatcher that if he was only a mile from my house he could certainly come one more mile and deliver the package they were paid to deliver. The roads were clear and there was no reason not to. They had to check on this and call me back. Five minutes later I got a call from UPS saying the driver would be at my house in about 15 minutes.


I_Promise's picture
Posts: 218
Joined: Aug 2011

Thank you so much for all the information and for sharing the anguishes of this disease. I just don't understand how some people don't realize that we are dealing with life or death; when something is denied, call me! when you can't deliver something call me! Is it that you already think my sister is a walking dead woman or just that you don't care???

My sister once told me that she every time she would overcome an obstacle like access to surgery, radiation, chemo, she would think "Bell Curve!". She and I looked up together the bell curve survival of Anaplastic Astrocytoma. Some would think of it as morbid. I beg to differ, this is why:

1) The bell curve shows us that not everyone die of this disease. The tail right hand side shows that eventually there are a few outliers that continue on; the bell curves flattens ad infinity.

2) The bell curve that we look lumped everyone together: surgery, no surgery; radiation no radiation; chemo and no chemo. Prexisting disease and healthy, young and old. People who were able to overcome the bureaucrats or not.

So my sister is young, healthy, had the surgery, the radiation, and the chemo (plus my own additions of antioxidant and melatonin). So when she says "Bell curve!" she is referring to the fact that she is pushing herself into the right hand side of the curve, towards the lucky outliers.

Yes, I can reason myself out of my panic mode. But I live with this tumor. My whole life revolves around it. Is is my sister tolerating the chemo? (yes) Has she gone out for some fresh air? (no) Is she tolerating the switch from dexamethasone to prednisone (yes).

Once I read on this board that the tumor wins if you let it overtake your life, if you stop making plans for the future (it was better written). So we are planning to travel to Egypt and see the Pharaohs. We just booked our plane tickets for a ski trip in February:

"Should I buy trip insurance" says my sister cynically. "just in case I am on my death bed by then?"
"Nonsense" I immediately reply. But I think, not she would pass away in 2 months, but what if she gets headaches, left arm weakness, or anything else that we have not experienced? And I know this is what she is referring to as well.

But I cannot stop making plans.

I tell her to forgo the trip insurance.



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