Re: [MOL] Information on Intrahepatic Bile Duct Cancer(Cholangiocarcinom [01376] Medicine On Line


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Re: [MOL] Information on Intrahepatic Bile Duct Cancer(Cholangiocarcinoma)



Hi Judith. I don't mind at all.
I was dx in Aug '98. That same month, I had surgery. The procedure is called 
"Whipples" and is quite extensive as it involves the removal of all or a 
portion of several organs and a resection of the bile duct to a new 
location. (I can send more specific info if you want but the surgery can 
vary depending on what the surgeon finds when he goes in).
Following the surgery, I received adjuvent treatment including both chemo 
and radiation. The radiation is a fairly accepted treatment but there is no 
real evidence that the chemo is effective against this type of cancer. My 
onc thought it was better to be safe than sorry and I agreed with him. There 
were only 8 chemo txs using small dosage 5FU and it caused me only minor 
discomfort. The rad. consisted of 24 txs, 12 txs at a time with a 1 month 
break in between.
At present there is no evidence that the cancer has returned but the doctors 
won't rule it out because of the chronic pain I've been suffering ever 
since. Especially since the pain has gotten progressively worse rather than 
the other way around. Because this cancer is so rare and the survical rate 
so low, they have little info on it so don't know whether pain is a normal 
reaction or not.
I was a good candidate for the most aggressive approach because my tumor 
appeared contained within the bile duct (although they did end up finding 
some involvement of the pancreas and lymph nodes), I was young and in good 
health otherwise.
I hope this info helps you some. If you would like more or just want to talk 
about it, I'm always here. I'd be interested in hearing your story if you'd 
like to share.
Your friend,
Bridget

>From: "Judith Tilton" <judithtilton@netzero.net>
>Reply-To: mol-cancer@lists.meds.com
>To: <mol-cancer@lists.meds.com>
>Subject: Re: [MOL] Information on Intrahepatic Bile Duct 
>Cancer(Cholangiocarcinoma)
>Date: Thu, 21 Sep 2000 20:44:48 -0400
>
>Hi Bridget....
>I hope you don't mind that I'm stepping into you dialogue with Marty, but I
>am interested in your cancer as I think the location of my largest tumor is
>extrahepatic and I am wondering what your treatment is and how you are
>doing?  When were you diagnosed, etc.
>Thanks much
>Judith Tilton
>-----Original Message-----
>From: Bridget Rambeau <bsbridget@hotmail.com>
>To: mol-cancer@lists.meds.com <mol-cancer@lists.meds.com>
>Date: Thursday, September 21, 2000 7:46 AM
>Subject: Re: [MOL] Information on Intrahepatic Bile Duct
>Cancer(Cholangiocarcinoma)
>
>
> >Hi Marty.
> >While I have bile duct cancer it's extrahepatic rather than intrahepatic.
> >Because your friend's cancer is within the liver the txs may differs. I
> >haven't been able to find a lot of info but am attaching a couple of 
>sites
>I
> >think will be useful. Txs will depend on the actual location of the 
>cancer
> >within the liver and the overall health of the patient as well as their
>age.
> >The rarity of this disease makes it hard to find someone to share
> >experiences with. I found that to be quite difficult so if your friend's
> >friend needs someone to talk to who's experiences are at least close to
> >theirs, I'd be happy to do that.
> >I will pray for your friend's friend and if they would like to talk to me
> >directly I'll be here.
> >Your friend,
> >Bridget
> >http://cancernet.nci.nih.gov/seer/Liver_cancer.html
> >http://www.nlm.nih.gov/medlineplus/cancergeneral.html
> >
> >
> >>From: Marty Bachman <marty419@juno.com>
> >>Reply-To: mol-cancer@lists.meds.com
> >>To: mol-cancer@lists.meds.com
> >>Subject: [MOL] Information on Intrahepatic Bile Duct
> >>Cancer(Cholangiocarcinoma)
> >>Date: Tue, 19 Sep 2000 11:35:10 -0400
> >>
> >>Ihave a friend who knows somebody with this rare type of cancer.  I need
> >>to request information on the treatments from anyone who survived this
> >>cancer.
> >>
> >>Thank You
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