• From: Antioch, CA
  • Registered: Wed, 02 Aug 2006
  • Posts: 13

Topic: Intro...sorta newly diagnosed

Hi everyone,
Kelli here, from Antioch, CA.  I have been dealing with Carcinoma of Unknown Primary since this last April.  After going for a 3rd (and sense then, fourth) opinion with the Dr.'s at Stanford, who are still working on finding what this is, the Stanford Dr's believe with 93% certainty that it's Cholaniocarcinoma. 
I'm 42 and a Breast Cancer survivor of 16 years.  So when they did a PET scan back in March and found something that appeared in my stomach area, they were surprised (and yeah... me too!!!).  I had surgery to remove several lymph nodes that came back adenocarcinoma and they thought they had gotten it all.  But a follow-up PET showed it had spread to my liver with a 2.5cm mass in the intrahepatic area (?).
So... the docs at Stanford say I am not a candidate for liver resection at this time, because of it's location (they say it's too close to my heart) and that resecting the liver will not stop it from coming back, and there's no use in "putting me through it". 

So now, I'm doing this "global" chemo as my Oncologist calls it, of Taxol and Carboplatin.  But from what I'm reading on here, I'm wondering.... is chemo going to work at all?  Am I losing my hair for nothing? (silly I know, to worry about my hair, but it's my prize possession!).  After losing all of it in 1990 I never cut it again, except to donate to Locks of Love.

I do have just a few of the symptoms for CC.  Enlarged liver and dull ache on my right side that's been constant for nearly 2 years.  Two years ago, they did an endoscopy and found nothing wrong other than "my bile ducts were backing up into my stomach" caused by stress the doc said.

Is there hope?  Is there any recommended alternatives?  I know it seems silly to say this, because everyone on here is feeling that same way I have no doubt...... but although I've had a great life, I'd just like a bit more time!  Ya know?

I'll go where ever I need to and fight with my insurance.  But I feel like I'm punching at air, because I'm so confused on how to help my doctors finally diagnose me and get on with it.  I'm ready to fight!!!  And after 4 opinions, and two alternative Doctors opinions on top of that..... I'm still so unsure of where to go and what to do. 
And after 3 months of seeing this doc and that doc.... I finally decided to do something and that was the chemo.  And now????

Input from anyone and everyone would be so greatly appreciated!

I'm so glad I found this website!
Thank you,
Kel

KelLewis's Website

  • Registered: Fri, 30 Jun 2006
  • Posts: 30

Re: Intro...sorta newly diagnosed

Hi Kelli,

I wanted to let you know that my husband had recurrent unresectable cc after 7 mo of Gemzar treatment.  The doctor at Stanford said this time they couldn't operate so he was referred to the Cyberknife Tx Center.  His procedure was done 3 mo ago, 6 wks ago his PET scan was clear and we actually follow up on Mon at Stanford with his 3 mo PEt scan.
Cyberknife might be something you could consult about.  Dr Goodman has been great!
Terri

  • Registered: Fri, 12 May 2006
  • Posts: 8,312

Re: Intro...sorta newly diagnosed

Hi Kelli,
continue to read the posts on this site.  There is much to learn from the people sharing their experience.  I would contact other doctors to have more opinions in re: to resectability of your cancer.  In many instances you will be able to send copies of your CT report to other physichians for review. 
Good Luck
MarionS

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
  • From: Antioch, CA
  • Registered: Wed, 02 Aug 2006
  • Posts: 13

Re: Intro...sorta newly diagnosed

Terri,
Thanks for the info on the cyber knife.  Actually, Dr. So at Stanford said after three rounds of chemo, they would "revisit" the idea of cyber knife.   So there's still a bit of hope, I'm thinkin.
And Marion...
Thank you for the kind words.  I don't think I'll ever stop looking and hoping.  I remember reading a post by Stacie along those same lines.  Continue to find more opinions.  And of course, each and every one of them is different.

Thanks again,
Kel

KelLewis's Website

5 Reply by stacie (edited by stacie Mon, 07 Aug 2006 08:25:25)

  • Registered: Fri, 06 Jan 2006
  • Posts: 258

Re: Intro...sorta newly diagnosed

Kelli,

You have a lot of good questions and I wish there were clear and concise answers to them.  First off, I'm interested why your oncologist wants to start off with Taxol.  The only proven chemo to work with cholangio up to this point is Gemcitabine, and 5FU seems to also work.  Tricia took one dose of Taxol and immediately lost all her hair (darn it).  Gemcitabine and 5FU don't have this effect although there are some others.  You may want to talk with your oncologist about his chemo choice and why.  You should also be looking into Avastin and possibly Erbitux or some of the other targeted therapies on the chemo spreadsheet.  They have been working for several patients on the website.

There are several people who are looking at alternative therapies on this website but I haven't heard specifics on anything that is working.  Our naturopathic Dr. gave us some Avemar - which we had been studying and Mark will start that immediately.  She has seen a couple of patients completely healed using it.  She also suggested the Gerson Diet (or lifestyle) they call it.  You can look it up online at www.gerson.org - they have a lot of very interesting stories of complete healing from all kinds of cancer on their disc - which I watched last week - especially interested in the patients that were cured from Peritoneal cancer and pancreatic cancer doing this diet.  Just something to look into.

Good luck - keep us updated.

  • From: Alta Loma, CA
  • Registered: Sun, 02 Apr 2006
  • Posts: 28

Re: Intro...sorta newly diagnosed

Stacie- You mention that your naturopathic doctor gave you Avemar.  We read up on this and are very interested, but it is our understanding that it is not available in the USA.  Can you post info on how we can obtain some or the contact info of a doctor that can get it for us?  Your response is much appreciated. 

Have to add that we love this site--read it almost every day and follow the blogs of everyone that is good enough to share their stories.  It gives us hope and a sense of not being alone.  My husband, Dan, was diagnosed 1 year ago (August 2005) and has been doing very well.  He is being treated with Gemzar and Zeloda.  Recently, however, he has been experiencing some discomfort in the area of the liver and will be undergoing a CT scan tomorrow to see what's up--we pray it's only his liver cysts (he has several and they are growing) and not tumor growth. 

We keep you all in our prayers -- please pray for good test results for Dan, too.

  • Registered: Fri, 06 Jan 2006
  • Posts: 258

Re: Intro...sorta newly diagnosed

Avemar just recently became available in the U.S. through a company called American Biosciences.  It costs about $160.00 for a months supply - this is pretty good compared to some of the other treatments we've been looking at.

Here is the website: http://www.fubaohealthstore.com/Ave30.html

I would really be interested to know if anyone else is trying it, so that we can watch progress together.

  • From: Antioch, CA
  • Registered: Wed, 02 Aug 2006
  • Posts: 13

Re: Intro...sorta newly diagnosed

Stacie,
Thank you so much for the links and the info on the chemo therapy.
That's exactly why I'm pushing my current Oncologist to fully diagnose me with CC.  As I mentioned earlier the Doc's at Stanford are  93% sure it's CC and she doesn't seem to want to entertain that idea at all.  Which I find very frustrating because of the chemo treatment alone.
And you're right..... two weeks ago I had my first cycle of Taxol / Carbo and my hair is steadily falling out.
With 5FU, it's my understanding everyone is allowed a "lifetime" dosage of no more than 500mg.  And I had 300mg back in 1990 during my fight with Breast Cancer.  But I will certainly ask her about having the Gemcitabine along with the rest of the  5FU.  She wants me to do 3 rounds of Taxol / Carbo before we try something else.  And her reason is because she isn't 100% positive of just what kind of cancer I DO have.  Frustrating, frustrating, frustrating! 
And the diet link.... thank you!  My way of thinking is, everything I put into my body at this point is going to make my liver and bile ducts and etc work that much harder, taking away from it's concentration to fight this cancer.  So it's hard to eat and yet I know that's a necessary thing.  So I will definitely check into your link.  Thank you again!
On the Avemar, I plan to see my naturopath next week, and I'll mention it to her and see about getting on it myself.  She has me taking three other natural herbs that have been proven beneficial in stopping the tumor in my liver from growing, if not reducing it.  So we'll see what happens. 
This website is awesome!  It's been a wealth of info and support for me and my family!
Thank you,
Kel

KelLewis's Website

  • Geoff
  • Senior Member
  • Offline
  • Registered: Sun, 19 Mar 2006
  • Posts: 66

Re: Intro...sorta newly diagnosed

Hi Kel

You wrote:

"She (your naturopath) has me taking three other natural herbs that have been proven beneficial in stopping the tumor in my liver from growing, if not reducing it"

I'd be very interested to hear what these supplements are, could you perhaps post this on the "Alternative Treatments" section ?

Regards

Geoff