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(21 replies, posted in Introductions!)

Hi Zupton,

I am sorry about your diagnosis.  My wife's cholangiocarcinoma was found when it metasticised and was 8cm in the  liver.  Since she originally had cancer of unknown primary, we couldn't take many actions.  Since yours is defined, the Mayo has had very good luck with transplants for pancreatic patients.  Maybe they can remove the cancer with a whipple and transplant your liver.  http://www.mayoclinic.org/bile-duct-cancer/
My wife had SirSpheres implanted, which didnt work and was possibly  done too late,that could be another option.
From the chemo standpoint, there are significant POSITIVE results coming out the treatment of some nasty cancers (triple neg breast cancer) with PARP inhibitors and trials will be done for pancreatic cancer.  check out http://www.parp-inhibitors.com/parpinhibitors.html

Since time is important and a given drug(s)  only work for a fraction of the people, look into personalized testing of your tissue to see what wont work, 8 weeks is too long to see if you fit in the 15-30% that a drug works.

It is a tough battle, I wish you the best of luck.  Contact me  via email if you need anything including the list of resources that I have developed.

Regards,

Murray


zupton wrote:

I've just discovered this site, the discussion boards and the struggles and hope that are contained here.  Here is my story as an introduction:

I am a 35 year-old man, and I was diagnosed with cholangiocarcinoma in early July, 2009.  At that time, there was a 12cm, poorly-differentiated tumor in my liver and some involvement in the surrounding lymph nodes.

I am lucky to live in the Washington, D.C. area (at least with respect to this) and am being treated by the doctors at the National Institutes of Health's National Cancer Institute.  The surgeon there advocated for aggressive liver resection followed by chemotherapy.  This was the opposite of what my other doctors had suggested.  However, after much soul-searching, my family and I thought that the NIH route would be the best, so I signed up.

Unfortunately, I also have an intestinal disease called Crohn's disease.  I had two previous abdominal surgeries that left me with a lot of scarring on the inside.  Also, there was some damage to my remaining, non-cancerous liver that was done by the Crohn's drugs.  Finally, when they got inside to do the surgery, it looked like there was some cancer in the distal bile duct near my pancreas.  After all of that, the surgeons decided to sew me up without removing or resecting anything.

So, now I'm finishing up my first course of Gemcitabine and Cisplatin.  I'm in the  "one week off" part of the 21 day cycle.  I seem to be tolerating that well, with only a bit of fatigue.  The hope is that some combination of this treatment and chemoembolization will make surgery a better option.  However, it looks like the surgery that could prolong my life is both a radical liver resection and a whipple procedure.  To say the least, that is terrifying.

I look forward to continuing to read the information that is here.  Thank you all for everything that is already done, and I look forward to contributing some tidbits of information so that others may be helped.

Patty,
My wife has CUP/biliary. showed at last PET I have searched the country for the best doctors and trials and I have some info to share. Even though we have an HMO, we got unlimited treatments out of state at a great doc. email me 4 more info read your coverage handbook about appeals.
I looked at the Pima health care description and in the event of serious illness you are entitled to an expedited review.  In Mass,  we got approved in less than a week.   Your PCP should be able to fight for you.
If this is the Arizona version of Medicaid, it may be possible for your congressman to put on some pressure.  I don't understand how they can cancel you.  Was the April 1 just the end of the appeal date?

April 5, 2008 12:41 PM


Murray said...
Patty,

Since you live in AZ, contact Liz Campbell lcampbell@tgen.org of Dr. Daniel Von Hoff's office. He is one of the best in the country and evals for trials and the trial itself may be helpful.  Clinical trials are no cost and even if no trial for bile duct is available, you might be able to get the meds on a compassionate use basis (for free) since the cancers are so similar.

Keep up the fight

Murray
www.tgen.org