Topic: New member in Houston, TX

Hello!

I am a new member of this forum. I live in Houston, TX. I was diagnosed in January of 2008, with an unusual variant of cholangiocarcinoma, known as mixed cholangiohepatocellularcarcinoma. If I understand correctly, it is supposed to be a hybrid of hepatocellular and cholangiocarcinoma. I was being treated at the Baylor Liver Center until April, and then was referred to MD Anderson Cancer Center. I look forward to exploring this web site, and contributing what I can to the discussion.

Violarob in Texas

Re: New member in Houston, TX

Welcome. Kelly Lester was treated at Houstons MD Anderson Center. Unfortunately she did make it, but her blog might give you some heads up on the doctors and procedures there. You can find it in the family blog section.

Good luck on your treatments.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: New member in Houston, TX

Kelly's blog was removed.  However, Kelly was my dear friend, and I know her treating oncologist and surgeon:

Oncologist: Dr. Robert Wolff
Surgeon: Dr. J. Nicolas Vauthey

They are both great doctors.  Kelly particularly loved Dr. Vauthey's sense of humor, as it is as witty and biting as Kelly's sarcastic humor was, and Dr. Wolff was always so kind to Kelly. 

Dr. Melanie Thomas was one of the go-to oncologists at MD Anderson for cholangiocarcinoma and HCC, but Dr. Thomas has recently moved to Hollings cancer center.  I have an email to her for more details on who else to see at MD Anderson for cholangio.

30-something caregiver

Re: New member in Houston, TX

Hi, everyone. Thanks for welcoming me to this forum. I visited Kelly's blog, but frankly found it depressing so I did not read much of it.

My oncologist at MD Anderson is Milind Javle. I like him a lot. He specializes in oddball variations of cholangiocarcinoma. He is the only onco doc I have found who has actually treated my unusual diagnosis before. I originally requested to be treated by Melanie Thomas, but she seems to be concentrating on clinical trials these days, and I do not qualify for any of the current trials at MD Anderson. (I did not know she was practicing elsewhere now; she is still listed on the faculty at MD Anderson.)

My overall experience at MD Anderson so far (3 months) has been overwhelmingly positive. My disease has been stabilized, and I have not had any side effects at all from my meds/chemo infusions. I have no mets outside the liver. I feel lucky in that only 2 tumors are clearly seen on CT, both of them only 1 cm in diameter. I don't want to ramble on and on, but I am happy to give details of my situation to anyone who is interested and feels they could benefit from my personal experience as a cancer "newbie".

Violarob in Texas

Re: New member in Houston, TX

My father was seen by Dr Vauthey and he was not very encouraging.  In fact my parents left that appointment very depressed.  I got the impression he was quite conservative.  I do know of another patient who used Dr Vauthey for colon cancer surgery and he had a very postive experience.  Good luck to you.  Another surgeon at St Luke's is Dr Fisher and he was very kind, and gave it his all to support the patient and family.  He was very involved.  I would recommend him to anyone.
Good luck

Re: New member in Houston, TX

violarob wrote:

Hello!

I am a new member of this forum. I live in Houston, TX. I was diagnosed in January of 2008, with an unusual variant of cholangiocarcinoma, known as mixed cholangiohepatocellularcarcinoma. If I understand correctly, it is supposed to be a hybrid of hepatocellular and cholangiocarcinoma. I was being treated at the Baylor Liver Center until April, and then was referred to MD Anderson Cancer Center. I look forward to exploring this web site, and contributing what I can to the discussion.

Violarob in Texas

I am new to this site as well. My wife was diagnosed w/ CC, Feb 07, had Liver resection, 3 Chemo's and one with a Radiation program. She had done well til this year, Jan 08 when a mets to her lungs was confirmed. We looked for clinical trials since it was recommended by our Oncologist here in KC and since there was not much more they could do here for her. We visited Barnes/Mayo clinical trial in St Louis and M D Anderson in Houston. Both times my wife did not qualify for the clinical trial due to elevated Liver functions. Anderson did recommned a chemo regimen for her and we are having that administered here in KC.

We visited with Dr Ahmed Kaseb. He has taken over for Dr Melanie Thomas. He has a trial program going now but you have to have the HER 2 receptors to participate. My wife did not, perhaps you do. Anderson will run the tests for you.

My suggestion is to explore the clinical trials available before you do too much chemo. Too much chemo makes you less qualified for the clinical trials from what we can tell ( they call it Cytotoxic). We were impressed with Anderson and think they are one of the best.

Good luck.

Handyman

Re: New member in Houston, TX

Dear Handyman: Thanks for your encouragement. The reason that I am excluded from almost all clinical trials is because of my unusual diagnosis. Understandably, they want everyone in the study to have the same diagnosis so that they are comparing "apples to apples", not "apples to oranges". I have visited several cancer message boards, and have yet to find a single person anywhere who has mixed cholangiohepatocellularcarcinoma.

I am very pleased with my treatment so far at MD Anderson. I have high energy, no side effects from the medications, and the cancer has been stabilized. Many thanks for your good wishes!

Violarob in Texas

Re: New member in Houston, TX

My wife, Kathleen, had the same type of mixed tumor and after two surgeries and several rounds of chemo, she was treated with Therasphere at Mayo Clinic.  Her first round was in October and her second in February, after which it was determined her liver was too weak to handle any more of the radiation.

Insurance covered both treatments and it was the easiest treatment she ever received.  No side effects and wonderful results (AFP way down and liver tumors reduced).  Unfortunately, her cancer had already spread to her lungs and that, combined with all the treatment her liver endured over 5+ years, was just too much for Kathleen.

I strongly believe in Therasphere and you are being considered for this at a much earlier stage than Kathleen so there is reason for optimism.

Good Luck!

Re: New member in Houston, TX

Bill,

You said your wife Kathleen was treated with theraspheres.  Do you mind my asking what insurance you have?  Did they pay the entire amount?  Thank you.

Sophie

Re: New member in Houston, TX

Sophie,

Kathleen had Medica insurance (MN based health plan with a million members) and her Therasphere expenses at Mayo Clinic were paid in full.  Remember, she had a mixed tumor of cholangiocarcinoma and hepatocellular carcinoma so that may have played a role in the coverage decision. 

I did some research for another member on this site and found that CIGNA covered Therapshere in some cases also (see link). 

http://www.cigna.com/customer_care/heal … herapy.pdf

Don't let an initial insurance denial stop you. Fight it and keep escalating the issue or get your employer involved.  Let me know if I can hekp.  Check this out:

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

Good luck!

Bill