Topic: Mary's Recent Diagnosis of Cholangiocarcinoma

My wife, Mary, experienced all the classic symptoms of Cholangiocarcinoma the week of January 7th.  At first the thought was a blocked bile duct so an endoscopy was performed to remove the blockage.  During this procedure, the tumor was discovered.  A biopsy confirmed the tumor as being Cholangiocarcinoma.  A PET Scan was performed indicating a 7cm tumor high in the liver pretty much shutting the bile ducts down and spreading into about 25% of her liver.  Her local team concluded it was inoperable.  An external drain tube was inserted to provide temporary relief.

2nd opinion was conducted through Tampa FL Moffitt Cancer Center with same conclusions.  Her local team (St. Petersburg FL) in concert with Moffitt defined a treatment protocol of radiation and Chemo.  Subsequent to these consultations, she had a permanent metal stent placed which was a big improvement over the external drain.  However, she just underwent emergency surgery for an abdominal abscess (removed over a liter of pus) probably caused by the stent procedure.  As this was major abdominal surgery, it will delay the start of radiation for some unknown amount of time.  This is a major concern to me as the tumor was significant in size 8 weeks ago

Re: Mary's Recent Diagnosis of Cholangiocarcinoma

Miles,
I am sorry Mary has had such a tough time. Dont lose hope! CC is usually a slow growing cancer so the 8 week delay might not mean much. Several people here on the board were refused surgery but were later offered it because the radiation/chemo shrank the tumor enough to perform the surgery.

I know you have already had 2 opinions, but you may want to send your images and results to the mayo clinic or other team reccommended on this site for a third one. All doctors a different and some have a lot more experience and are willing to try.

You have every right to be scared. This is a very scary cancer, but there are several long term survivors on this board and new treatments and discoveries are popping up. Take care of yourself and MAry.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Mary's Recent Diagnosis of Cholangiocarcinoma

Dear Miles, I'm so sorry you and Mary are going through this.  My husband Charlie same age as Mary and healthy prior too.  It is scary.  Charlie also lost weight with low energy.  I second what Kris says about getting a 3rd opinion.  I'm not sure Charlie would be here today if we hadn't kept pushing and fighting.  Charlie had chemo, chemoembolization and then over half his liver removed in 11/07.  His tumors were big too covering the entire area they took out.  He just finished radiation and oral chemo.  What works for some doesn't work for others.  I'm sure you and Mary will find what's best for her.  Best wishes to you and your family.

Carol

Also, like Kris says, Charlie was refused surgery at the beginning (5/07) until we found a surgeon willing to do the procedure in Nov.

Re: Mary's Recent Diagnosis of Cholangiocarcinoma

My husband was diagnosed with liver cancer in Jan 08.  Now we are told from biopsy that it is CC that has covered much of the left lobe and a portion of the right.  We are seeing the oncologist tomorrow to talk about treatment and options.
I too remember how tired he was since mid-November but never would have thought it was cancer, much less this kind.
My husband is 61 ys old tomorrow.  He is diabetic but never out of control.  However, he was a heavy drinker until abuot 8 yrs ago, which led drs to conclude it was liver cancer until the results came back on Friday.
We have a 3-yr-old boy who we hope to see grow up.
Thanks for the insight and support of this website.

Re: Mary's Recent Diagnosis of Cholangiocarcinoma

Mary is so strong and such an inspiration.  She has gotten off the IV morphine drip and has made some real strides in her state of health.  Looks like she will be released from the hospital Thursday and home health care assigned to address the surgical wound from the abdominal abcess.  Looking at the positive side, this 3 week period will give her an opportunity to build strength prior to radiation and chemo.

Thanks to all for your supportive comments and suggestions..........

Re: Mary's Recent Diagnosis of Cholangiocarcinoma

Mary's Update 3-2-08
Last two weeks have been good during the surgery recovery.  No pain meds required and just a slight drop in weight despite poor appetite.  On 3-18-08, the CT Scan in prep for radiation treatment discovered several blood clots in her lungs.  Even though she had no symptoms to indicate this as a problem.  She was checked into the hospital for treatment of Heparin via IV.  On the 19th , about midnight, she went into pulmonary embolism.  Very painful and great difficulty in breathing.  She was moved to ICU with an even greater delivery rate of heparin.  As of this evening she is resting with heparin and pain meds being delivered via IV.  Getting out of bed results in both pain and difficulty with breathing (anything is worth it to not use a bed pan  ;-)

This episode has taken a big hit on her typical optimism!  She is still waiting to start chemo and radiation due to all these complications.  Oncologist and Radiologist remain positive to start their treatments next week despite this recent set back.

Question for the Forum

Re: Mary's Recent Diagnosis of Cholangiocarcinoma

I *think* bloodclots are not uncommon. Again, I may be wrong, but I think Barb (thecdr) had blood clots as well or I could possibly be remembering this wrong. Anyway, there are people on the board that had them and got treatment afterwards. Miles, hang in there. This could be a just a very painful and unfortunate setback.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Mary's Recent Diagnosis of Cholangiocarcinoma

Miles... Blood clots are consider greater risk possiblilities during and after major type surgerys.  Normally any major surgery, precautions are taken by wearing special leg stockings and use of heparin.  I don't really think cc of the liver is the cause unless the has been some mets to the lungs and tumors not identified. And even then It would be questionalble to me until they reached a certain size.  But as it has been said before we all have different experiences as we are all different DNA speaking. Mary don't let this set back change your mind.  This is just more of a reason to keep on trucking. Eating and drinking and building strentgh is the name of the game!  You'll get the sleep you need from pain medication and tiredness from daily routine.  Wish you the best! Recover soon and push on.

God Bless.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Mary's Recent Diagnosis of Cholangiocarcinoma

About the blood clots. I had a liver tumor biopsied on March 7th. Before getting the results, on Monday March 10th  I got a pulmonary embolism, blodd clots in the lung. I was told that an active cancer in the body WILL
cause clotting. Thus, I was prepared to get some bad news on Tuesday (Mar 11th), and sure enough, the biopsy showed a malignancy in the liver.
    This is being written on Easter eve, and I'm taking Coumaden and shots (lovanex) to get my blood thinned to a therapeutic level of 2 and 1/2.
    I have been to Guthrie Clinic in the past week, had an MRI of the liver,
and have talked with the liver surgeon, Dr. Vandermeer. He told me I have bile duct blockage and a 7 cm tumor on the liver. Ha, the blood clots now seem like a walk in the park.
    And now, perhaps someone can answer my question.
     At the time of my biopsy, I also had blood work. Dr. Vandermeer showed me the lab printout, and the billirubin was normal, as were the other functions, EXCEPT for the ca - 19. This lab said a normal reading is under 37.
I have read many of the cases on this site and see ca - 19 numbers in the 500 or 600 range. My reading was -gulp- 21,000. My question is does this number mean  my body is filled with cancer?
    Incidently, with the exception of mild pain below my right rib (24/7, began
in July of '07), I have no other symptoms. Also, I have ongoing sclerosing
cholangitis (since  2003).
    Thanks for any answers.

Re: Mary's Recent Diagnosis of Cholangiocarcinoma

About the blood clots. I had a liver tumor biopsied on March 7th. Before getting the results, on Monday March 10th  I got a pulmonary embolism, blood clots in the lung. I was told that an active cancer in the body WILL
cause clotting. Thus, I was prepared to get some bad news on Tuesday (Mar 11th), and sure enough, the biopsy showed a malignancy in the liver.
    This is being written on Easter eve, and I'm taking Coumaden and shots (lovanex) to get my blood thinned to a therapeutic level of 2 and 1/2.
    I have been to Guthrie Clinic in the past week, had an MRI of the liver,
and have talked with the liver surgeon, Dr. Vandermeer. He told me I have bile duct blockage and a 7 cm tumor on the liver. Ha, the blood clots now seem like a walk in the park.
    And now, perhaps someone can answer my question.
     At the time of my biopsy, I also had blood work. Dr. Vandermeer showed me the lab printout, and the billirubin was normal, as were the other functions, EXCEPT for the ca - 19. This lab said a normal reading is under 37.
I have read many of the cases on this site and see ca - 19 numbers in the 500 or 600 range. My reading was -gulp- 21,000. My question is does this number mean  my body is filled with cancer?
    Incidently, with the exception of mild pain below my right rib (24/7, began
in July of '07), I have no other symptoms. Also, I have ongoing sclerosing
cholangitis (since  2003).
    Thanks for any answers.

Re: Mary's Recent Diagnosis of Cholangiocarcinoma

bclegg, while the number you have for the CA 19 is very high it is in no way indicative of how much cancer you have.  It is most useful when you are on chemo and the docs can see how well the chemo is working depending on it going up or down.  There are many things besides cancer that a CA19 will show elevated, including sclerosing cholangitis

Barb

12 (edited by marions Fri, 25 Jul 2008 12:20:49)

Re: Mary's Recent Diagnosis of Cholangiocarcinoma

bclegg,
This is what I have learned, so far.  In addition to the information Barb has shared with you I would like to add that it is the trend (upward or downward) of the CA 19 plus other disease symptoms physicians are evaluating when determining the status of the cancer.  You might want to take a look at the previous readings of your blood tests and compare those to your all around well being in the past and that of the present.  Fluctuation of the CA 19-9 does occur for various reasons which may or may not be related to cancer progression however; in most instances they are included for observation therefore; presenting itself to be one more diagnostic tool. Also, the CA 125 a tumor marker used with Ovarian cancer (the cells show some resemblance to those of CC) may be included in your screening.  Peter and I believe Jeff (as numerous others) is watching both tumor markers closely. Have you discussed this with your physician?
In addition too, there have been numerous postings in the past in re: to tumor markers which may be easily be accessed by using the "Search" function, on top of the page.  It may also give you some additional insight to the value of both, the CA 19-9, and the CA 125.  Hope this helped.
Thinking of you and wishing for the absolute best,
Marions

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