Topic: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

I have posted on this topic before but there are new studies verifying that even though the surgeons can't remove the tumor because of its size or loication, a brachytherapy treatment where micropsheres are injected into the tumor blood supply accomplishes the same thing in a simple 2 hour outpatient procedure. My wife had it done and I can verify the results. Unfortunately the cholangiocarcinoma had spread outside of her liver into the peritoneum before we utilized this procedure. Here is a recent paper on the treatment. Not only can you now partially or completely destroy the tumor with few side effects so quality of life is better. Here is an excerpt from the article published in 2008:

"Treatment of Unresectable Cholangiocarcinoma Using Yttrium-90 Microspheres

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Thank you for your post Wayne. Right now, we're in the process of waiting for our insurance to approve this procedure.  We met with Dr. Kennedy in Cary last summer, but got a call from UNC Hospital for resection.  Charlie had that done, but unfortunately he still has tumors in his liver.  After much chemo and many other procedures, we met with Dr. Kennedy again last week and all is on go for the SIRspheres except BC approval.  We're hoping to have it done the first of Dec.  Charlie said he won't have it done without approval first because of the cost. In the meantime, he's having another IV oxaliplatin infusion next week along with Xeloda pills hoping to keep the tumors stable until insurance approval.  I really appreciate all the information you've provided.  Praying for a miracle with the insurance co.  We really like Dr. Kennedy a lot!  Sounds like you had a good experience with him also.  I'm sorry Valerie's cancer had spread. 

Best wishes,
Carol

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

I have contacted Wake Oncology via their website. How does one if they are a candidate for this?

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Glad you found this.  Dr. Kennedy is one of the doctors I was going to recommend to you.  The other is Dr. Hanna Sanoff at UNC Hospital, Chapel Hill.  If you have any recent scans that you can send or have sent to Dr. Kennedy, I think he can usually get a good idea from those, also liver function tests and a few other tests.  He can tell you what he needs.  He's a smart man and a kind doctor.  Please don't worry if you don't hear from him right away.  I know he is out of the office for most of November.  He usually answers emails very quickly.  You can call them also.  His nurse if great too.  Mary England is her name.  Hope this helps.

Carol

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Carol, can I ask why Wake Oncology and not Baptist Hospital? The Sirtex website shows they are both certified in this treatment. Also, it appears this therapy is most successful when coupled with chemo. Is that correct?

Anyone with experience with this therapy, please chime in!

Thanks and good luck to all!

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Sure, sort of a long story though.  Charlie was with an oncologist at Forsyth Hosp. last year when I first researched the microbeads.  Dr. Kennedy's name kept coming up on many of the sites.  At that time, we weren't happy with our dr. at Forsyth so I contacted Dr. Kennedy directly.  We would have gone with that procedure if our insurance approved it last year, but I had also contacted UNC Hosp. and a surgeon called us to do a resection so that's what we did.  Now, I just trust Dr. Kennedy completely and I wouldn't want anybody else to do the SIRspheres except him. We feel like he's the most qualified and knowledgeable doctor to perform it.  It may not matter anyway because it's looking like Blue Cross of Illinois is going to deny it even after appeals.  Still working and hoping though.   I don't have the answer to being coupled with chemo.  Charlie's had a lot of different kinds of chemo.  I think even the SIRspheres alone would help him.  Your welcome.  I hope you get the answers you need.

Carol

7 (edited by Walk Tue, 11 Nov 2008 16:19:58)

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Thanks, Carol. Maybe we could meet for lunch sometime when I am in W-S? My folks live in the Reynolda area.

Added:  This process is approved by Medicare/Medicaid, right? Is that an option if his BCBS doesn't come through? I am sure you have tried that route; just trying to help smile

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Wow, your parents are close by.  I can get to the Reynolda area in about 5 minutes.  We're between Shattalon Dr. and Bethabara Park Blvd.  Lunch would be great.  Charlie and I would be glad to meet you.

Charlie isn't eligible for Medicare until 24 months from his diagnosis, which will be May 2009.  He's on disability after a 6 month waiting period for it.  The Blue Cross of Illinois insurance he has now does not approve SIRspheres, but we're in the appeals process.  It's not looking too good, but we still have hope, always hope.  We did qualify for Medicaid for 3 months, but that was all and it was because we had so much medical that could make up their deductible.  So as far as I know, Medicare/Medicaid won't help us right now.  His ex-employer is still paying for his BC until the end of this year.  After that, we're on our own.  Will be paying $750 a month for his and my Cobra coverage.  Right now, we're only paying $325 for me.  Have to do that for 6 months until Medicare is available.  Unless anyone else has other ideas??

Carol

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Carol,

Do not take no for an answer!  Keep fighting for coverage because there are others out there paying for this.

* Listen to this radio program:

   http://www.patientpower.info/listenheal … 0Insurance


* Check out CIGNA's coverage position for this treatment:
      http://www.cigna.com/customer_care/heal … ioncriteri a_selective_internal_radiation_therapy.pdf


My wife had coverage for this with a Minnesota health plan called Medica.  I don't know if they did an exhaustive study of whether to cover Therasphere but they did cover it.  She had two treatments at Mayo Clinic and they were the best things that she did to address the liver tumors.  Unfortunately, it doesn't help when the cancer spreads beyond the liver.

Good luck.

Bill

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Carol,

So far that is all that I know about insurance. Mary England has been most helpful so far.

I would love to meet you both. You are practically neighbors of my parents; they are close by the intersection of Shattalon and Yadkinville RD.

I will use the email link to give you my contact info. I will be up there next Monday and Tuesday of next week if you guys are free and up for it. If not then, I am sure I will be there regularly.

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Thanks Bill for the good information.  We're not giving up. 

Hi Jan, your parents are so close to our house.  We probably go right by their house or close to it on the way to church.  I did get your contact info. and I'll be in touch soon.  Thanks.

Carol

12 (edited by Walk Wed, 19 Nov 2008 19:40:18)

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

I found this website about Y90/sirspheres.

Chuck's story on there tells about how they strong armed an insurance company into paying. Might be worth contacting them to get more info.

Good luck

http://www.y90support.org/yes/Stories.html

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Has anyone been able to like to the website that Wayne gave in his first post on this?  I can't link to it, and I would like to print it out.  Thanks.

- Suzanne

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Suzanne...it opened up for me when clicking on it.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Suzanne,

When I tried to link to it I got a message stating I had to reset my browser to accept cookies. Maybe that is the problem you are having also.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

I adjusted my cookies setting but still no luck.  I have a Mac.  I wonder if that has anything to do with it.  Can someone send me the link to my e-mail address, suzannegm@windstream.net

Thanks!

- Suzanne

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

I sent Suzanne the link.

Patty

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Thanks for the e-mails but I still had no luck.   I'll have to get my husband to solve this one for me.

Does the article show the quote that Wayne has on his original post?

- Suzanne

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Suzanne

I found the article on Pub Med...just google Pub Med and then type in the title on the Pub Med site.  It's the abstract only but hopefully will have what you need.  Hope that helps!

Jean

20 (edited by Ron Smith Sun, 11 Jan 2009 17:40:16)

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

For anyone who may not be aware, in the articles in http://www.y90support.org/yes/Stories.html
"Jerry's Story" is about Jerry Daniels, whose recent death was announced in "In Remembrance"

Ron

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Ron.....thanks so much for posting this.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Unrestctable cholangiocarcinoma tumors can be easily destroyed with Y-

Here is a hopeful story about Y90 microspheres:

http://www.nmh.org/nmh/mediarelations/m … m?cid=3115

Patty