Stev Klien

[Guest guest]

Hello Steve,

My emails to keeps getting bounced back as " undeliverable, " so I posted it.

Hello Steve,

As coincidence would have it, I am being treated at kaiser in Walnut Creek.

It would be well worth it to see Dr. Cheng if only to get a second opinion

and a different perspective on your case. I have 2 great doctors and it

took both of them to come up with my current course of treatment.

I'll assume that you are still learning " the drill " and apologize in advance

if I'm stating the obvious (or get pendantic--an occupational hazard).

1)The balloon dilatation is the way too go.

Sounds like you've got a good endoscopist. 2) Actigall and Urso are indeed

the same thing. At 170 pounds, I'm taking 2,400 mg/day. The general

consensus is that you should be taking between 20-30mg/kg-of-body-mass.

Urso is shown to decrease the incidence of colon cancer and may very well

do the same for cholangiocarcinoma. I take 4 pills in the morning and 4 more

in the evening. 3) if you are taking Choleostyramine (the yellow powder) for

your itching it must be separated from the Urso by 2-4 hours. This gets

very hard to do if you are taking a lot of Urso and Choleostyramine

throughout the day. They cancel each other out if taken too close together.

Rifampin worked much much better for me to stop itching than

cholestyramine. 4) Cipro is one of three antibiotics that I rotate through (2

per

day for me). I think cipro is the strongest but rotating through 3 different

ones

prevents the emergence of antibiotic resistant bacteria.

As for the " roller coaster, " it does get easier and don't loose hope. When

I was diagnosed in 96' the only treatment was transplant and it looked like

there was a 12% chance of cholangiocarcinamo. Now there is all the

treatments we've just been talking about. In addition, these treatments are

quite likely to reduce the chance of cholangiocarcinoma. Every year brings

new developments.

Adam

(Orinda Intermediate School)

> adam, I too am a middle school teacher. I was diagnosed with psc in

> may of 2003. I also have uc. I appreciate you putting that stuff up

> there to read. I have never made a post, I usually just look for

> information. I am currently going to the GI at Kaiser here in

> Sacramento. I was lucky to get a Dr. that is very experienced in

> this field. He diagnosed me on the 1st ercp, and has done 3

> procedures to balloon the ducts. He also put me on ursodial (I think

> it is the same thing as actigall) 3 times a day which is 900 mg. I

> am also on ciproflaxin 1 pill a day. I have had a few bouts of

> bacterial infection which almost put me on the ucsf list, but we now

> have a handle on things or so we think.

> I wanted to ask you one quick question? Did you worry about every

> little thing at 1st when you were diagnosed? I seem to have this

> worry that every little fever, pain, or itch is related to cancer,

> psc, or uc. I hope it gets easier.

>

> I do appreciate anything you might me able to add as I have yet to e-

> mail or talk to anyone who has this disease.

> Thank you

> Steve Klein