Topic: My visit to Mayo Clinic, Scottsdale, AZ

I went to the Mayo Clinic in Scottsdale, AZ today since we are here for spring training.  This is what I learned:

My liver cancer came from having Crohn's Disease (which I have had since 1975) and it is rare for people with Crohn's to get cancer in the liver since it would usually show up in the bowels.  However, the Dr.  Borad said that the fact that the liver tumor grew because of the Crohn's means that it is less aggressive and responds better and people live longer.

The small tumors did not start as a result of the liver tumor bursting but grew  from the liver and travelled to the outside casing of my bowel and are not floating around in my abdomen.  These are my two sites-liver and bowel.

He was happy to see that my tumors had shrunk from the chemo since he said Gemzar (chemo drug) does not usually work.  So he said I was doing well and stick with what I am doing now since being on his clinical trial means I would have to be off chemo for awhile and since it is working well, he didn't want to see that happen.  He didn't rule it out when the chemo stops working and I have to move on to another drug therapy.

He agreed with everything my doctor is doing and said chemo won't cure it but buys time and keeps the cancer at bay until maybe they come up with something that will cure it.  Anything I receive has to be systemic and not spot treated because I have multiple sites.  I feel it was worth the visit and it confirms that the treatment I am receiving is the right one.

Positive review, in general.

I also read this in an article.
Cholangiocarcinoma (cancer of the bile ducts) is more common among patients with primary sclerosing cholangitis. An estimated 9%-15% of patients with primary sclerosing cholangitis will develop cholangiocarcinoma, a very lethal type of cancer. Patients at highest risks for developing cholangiocarcinoma are primary sclerosing cholangitis patients with cirrhosis who also have long-standing ulcerative colitis.

How many others have colitis or Crohn's???

Re: My visit to Mayo Clinic, Scottsdale, AZ

I know that my mom always had "stomach problems" and in hindsight I feel that she may have had an undiagnosed illness. Her first cousin has Crohn's and I warned her that she needs to talk to her doctor about the risk of cc.

Patty

Re: My visit to Mayo Clinic, Scottsdale, AZ

Barbara,
My husband was diagnosed with ulcertaive cholitis and primary sclerosing cholangitis 19 years ago. He developed the cholangiocarcinoma as a result of the psc. we are on month 8 and trying to find an alternative means of draining bile from his system. We just got back from Mayo in Rochester. They couldn't put in a stent because of the scarring from the PSC. I am trying to learn more about biliary bypass. Know anything?
Good talking to u and hope ur feeling well:)

Re: My visit to Mayo Clinic, Scottsdale, AZ

Barbara....I am glad that someone has confirmed the true origin of your disease.  It co-incides with our brochure, which states:

What are risk factors for developing cholangiocarcinoma?

Primary sceloring cholangitis: chronic inflammation of the bile ducts
Chronic ulcerative colitis: chronic inflammation of the bowel
Choledochal cysts: sac-like structures forming off the bile ducts

On this board, we have seen numerous members with one of the above diseases preceding the development of Cholangiocarcinoma. 

Your actions have proven again the value of retaining more then one opinion when encountering this cancer. We have seen on this site, several people with favorable responses to Gemzar and I am happy to know that you are also showing positive results. 
Thanks for sharing this valuable information.
Tons of good wishes coming your way,
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: My visit to Mayo Clinic, Scottsdale, AZ

My dad also had Crohn's.  It has been very well controlled for 15 or so years.   I think he might also be getting PSC but we didn't know that until they tried to do the resection.  Who would have thought it was all related.  Hang in there!

Re: My visit to Mayo Clinic, Scottsdale, AZ

Hello,  I have this disease by have been told that I had no sclerosing cholangitis.   I have had surgery but 2 tumors have returned.   I am scheduled to start Gemzar next week and am terrified.   Can you please tell me something about it?   Did you have bad side effects, I understand some people tolerate it very well.   Have you had embolization or Therasphere?

Barbara wrote:

I went to the Mayo Clinic in Scottsdale, AZ today since we are here for spring training.  This is what I learned:

My liver cancer came from having Crohn's Disease (which I have had since 1975) and it is rare for people with Crohn's to get cancer in the liver since it would usually show up in the bowels.  However, the Dr.  Borad said that the fact that the liver tumor grew because of the Crohn's means that it is less aggressive and responds better and people live longer.

The small tumors did not start as a result of the liver tumor bursting but grew  from the liver and travelled to the outside casing of my bowel and are not floating around in my abdomen.  These are my two sites-liver and bowel.

He was happy to see that my tumors had shrunk from the chemo since he said Gemzar (chemo drug) does not usually work.  So he said I was doing well and stick with what I am doing now since being on his clinical trial means I would have to be off chemo for awhile and since it is working well, he didn't want to see that happen.  He didn't rule it out when the chemo stops working and I have to move on to another drug therapy.

He agreed with everything my doctor is doing and said chemo won't cure it but buys time and keeps the cancer at bay until maybe they come up with something that will cure it.  Anything I receive has to be systemic and not spot treated because I have multiple sites.  I feel it was worth the visit and it confirms that the treatment I am receiving is the right one.

Positive review, in general.

I also read this in an article.
Cholangiocarcinoma (cancer of the bile ducts) is more common among patients with primary sclerosing cholangitis. An estimated 9%-15% of patients with primary sclerosing cholangitis will develop cholangiocarcinoma, a very lethal type of cancer. Patients at highest risks for developing cholangiocarcinoma are primary sclerosing cholangitis patients with cirrhosis who also have long-standing ulcerative colitis.

How many others have colitis or Crohn's???

Re: My visit to Mayo Clinic, Scottsdale, AZ

Hello,

    My husband had Ulcerative Colitus from the age of 12, and it lead to
Primary sceloring cholangitis, which he was dignosed with in 1999. As I understand it, that left him with a much increased risk factor for CC, which he was diagnosed with in march of 2008.  It sounds like you have excellant medical consultants, and are in a good treatments plan/ I wish you the best.

Joyce C.

Re: My visit to Mayo Clinic, Scottsdale, AZ

I didn't have time to be scared and just did the chemo.  I have Gemzar 2 weeks on and one week off and also take Xeloda pills during the chemo period.  I have had no side effects except that I am a little tired some days and need a nap.  The infusion center gives me steroids before the Gemzar for nausea and I also take compazine with the pills.  I haven't tried it without compazine--just take it in case.  I have never been nauseus and I have not lost my hair.  My tumors have shrunk by 1/2 and I am back t my old life.  My feeling is...try it you may like it.  Seriously, it is easily tolerated, in my opinion.