My husband has intraheptic with about the same mass.  He received approval for the treatment by AETNA and had half the treatment done two weeks ago at the University of Colorado Hospital in Denver Colorado.  You might contact UCH Interventional Radiology at 303-372-6130 to see how they got it approved, it was approved very quickly.  I can't tell you yet if it has helped or not, I can tell you it made my husband very sick for the first two weeks, and he's still unable to eat as he did before and definately is very weak and fatigued but they tell you that will happen.  I'll let you know how he progresses, at first blush I almost wish he hadn't had the treatment because he suffered a lot with it, but if it ends up in the long run making him feel better then I guess it was worth it.

Just a quick follow up:  this was a two day out-patient procedure, and the side effects are that Bob feels like he has a very very bad case of the flu.  It has been a week since the procedure and he is still very weak and is in a lot of pain.  His stomach hurts more than the rest of his body, it seems, also pain in all of the stomach area and abdomen.  However, we were told to expect the flu - like symptoms.  Hopefully he will feel better soon.

I thought I'd post this here as well as under research because I had expected to have to battle for this, and I did not.  AETNA approved the following, it could be this is an option for others:

My husband is scheduled for this procedure on April 10 at the University of Colorado Hospital.  The technique uses millions of tiny polymer beads (microspheres) which contain a radioactive element yttrium-90.  This outpatient procedure involves a small catheter guided into the liver and the SIR-Spheres are infused through the catheter.  The spheres are carried through the bloodstream directly to the tumors in the liver where they preferentially lodge in the small vessels feeding the tumor and deliver their dose of radiation for a period of approx 2 seeks.  They selectively irradiate the tumors and therefore have the ability to deliver more potent doses of radiation directly to the cancer sells over a longer period of time, while sparing the nomral healthy tissue.  This treatment was developed in the late '80's in Australia and was approved by the FDA in 2002, altho for treatment of secondary liver cancer.  So getting the insurance company to cooperate to treate Cholangio could be difficult, but AETNA approved the procedure in (according to UCH) in record time.  I wanted you all to know about this treatment as a possibility for you or your loved one.  I will keep you posted on how it goes.  At this point the GEMZAR appears to have done all it can and the tumor markers are creeping back up, so we're praying that this treatment will be effective.  Check www.sirtex.com

My husband is scheduled for this procedure on April 10 at the University of Colorado Hospital.  The technique uses millions of tiny polymer beads (microspheres) which contain a radioactive element yttrium-90.  This outpatient procedure involves a small catheter guided into the liver and the SIR-Spheres are infused through the catheter.  The spheres are carried through the bloodstream directly to the tumors in the liver where they preferentially lodge in the small vessels feeding the tumor and deliver their dose of radiation for a period of approx 2 seeks.  They selectively irradiate the tumors and therefore have the ability to deliver more potent doses of radiation directly to the cancer sells over a longer period of time, while sparing the nomral healthy tissue.  This treatment was developed in the late '80's in Australia and was approved by the FDA in 2002, altho for treatment of secondary liver cancer.  So getting the insurance company to cooperate to treate Cholangio could be difficult, but AETNA approved the procedure in (according to UCH) in record time.  I wanted you all to know about this treatment as a possibility for you or your loved one.  I will keep you posted on how it goes.  At this point the GEMZAR appears to have done all it can and the tumor markers are creeping back up, so we're praying that this treatment will be effective.  Check www.sirtex.com

God Bless

5

(0 replies, posted in Insurance)

I think I posted this in the wrong place originally; in short AETNA is not paying for my husband's tumor marker tests, CA19-9, as they indicated that AFP is the test for this.  I didn't find anything on the Web to support that, it all indicated CA19-9.  His markers are coming down, so that says something too.  I've appealed. 

I'm hearing that they are also not paying for Avistan.  They are paying for my husband's GEMZAR and Tarceva, which is quite expensive and they've been covering all the other things.... so far.  But if many of us are having trouble with this same company, I'm wondering if it's because they have not had much experience with cholangiocarcinoma?

I'm "raising sand" and hope that they will look more into what's going on for this cancer.  My husband is better in many ways, markers are down, bilirubin is down, although he keeps loosing weight and is very very thin. 

I know my complaint about the marker tests is trivial compared to carriers not covering the needed chemo/treatments that cost so much more, so forgive me, but the costs at $159 per test do add up.  If any of you have experience with appeals at AETNA please let me know.  If they deny my appeal I already have the Colorado Insurance Commissioner's complaint web site bookmarked and I will fight to the finish.  I suspect we may all have to do this because this is not a common cancer and insurance carriers seem to need education.  I will keep you all posted.

God Bless

6

(31 replies, posted in Introductions!)

Hi Carolann,
This is a frightening disease and I remember clearly the way I felt when I heard.  It is hard, and it is lonely, and you and your mother have my prayers.  But, keep hope!!  My husband was diagnosed in October 06 and they were unable to place a stint because they couldn't get it past the tumor, however they did drain his bile ducts externally.  Without that we would have lost him then and there.  He has been treated with Gemzar, and now Tarceva, and his markers are coming down and last week they removed the external drain because they were able to get past the blockages!  His color is good, his energy is up, and his tumor markers are way down! (Even tho our insurance won't cover the tests for the markers - the dirty dogs have made our lives much more difficult lately, but as I understand it you don't have to deal with that, and thank your stars!)

What they are doing will make your Mom feel much better, and although there is no known cure for this right now, that doesn't mean that it's not out there.  It's just not known yet.

7

(3 replies, posted in Insurance)

I'm wondering if anyone else out there has AETNA.  So far, these people have been a nightmare.  It has added greatly to the stress for my husband and I.  They refuse to pay for the tests for his tumor markers.  They refuse to pay for a visit to a Dr. and University of Colorado where we consulted about therasphere treatement which I'm sure means they will refuse the treatment as well.  Is it just us?  Does anyone have anything positive to say about AETNA?  If so, I'd like to hear it because I'm so so so discouraged.  When I get something in the mail from them, I just cringe.  If you're looking for health care provider I would recommend United Health Care.  They were wonderful.

8

(3 replies, posted in Introductions!)

Thank you Peter!  The American Cancer Society and Johns Hopkins, among others, also seem to think CA19-9 is the test to use.  AETNA appears to be way off base.  Now I'm very worried about having to fight them for other things too, but FIGHT I WILL!

9

(3 replies, posted in Introductions!)

My husband was diagosed with cholangio in late October.  It was advanced and inoperable.  He's being treated with GEMZAR and TARCEVA and his markers are coming down.  However, our new insurance company refuses to pay for the tests for the markers, CA19-9.  What tests are being used for cholangio tumor markers?

10

(12 replies, posted in Insurance)

Our insurance company is AETNA, it changed from United Health Care on January 1.  I just discovered that AETNA is refusing to pay for the tests the Dr. is ordering to track my husband's tumour markers.  What test are being used and paid for?  If you would share what they are, I would appreciate that. I'm trying to find out if my husband's Dr. is ordering the wrong test, because it seems to me that testing for tumour markers is something a lot of people are doing.  I'm confused about why United would see them as necessary, and pay for them, and why AETNA doesn't think that we should be testing for tumour markers.  I've contacted the company advocate, but they have not returned with any information.

The test in question is CA19-9.