Tammy passed peacefully yesterday after battling with Cholangiocarcinoma for 19 months from the initial diagnosis.  I was lucky enough to be with her when she passed, along with my daughter and a few other family members. In the end she likely had liver and kidney failure based on her advanced issues.

I had introduced her to the board back in November of 2007 as you can see by the original post: www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1035

She was 47 years old.

Although she never visited this site itself, I would bring her stories of inspiration and hope from some of the long term survivors. It was always a source of inspiration and encouragement.

Her story is one of many, many comebacks and fighting up to the edge of death's door just to turn and run the other way.  Her life itself has been an inspiration to those around her that were lucky enough to know her.  Her stories have been captured on our family blog: http://tammyhealth.blogspot.com

After several complications including a blood infection, internal bleeding and lots of fevers she was bed ridden for the past few months.  This really changed her outlook, recognizing that if she could not have the quality of life she wanted, she did not want to go on.

She knew what was coming and seemed to accept it with dignity and class.  She would tell people that she would continue to get tired and then one day she would just go to sleep and never wake up again.  Yesterday was that day. 

She will be sadly missed.  Our family is strong and I expect that we will be able to get through this somehow.

Feel free to light a candle: http://www.gratefulness.org/candles/can … &gi=TN

Many blessings to all !

My 46 yr old wife Tammy has had a very difficult time recently and I would like any help and input from the people on this board. 

She was diagnosed with a Klatskin Tumor at the Mayo Clinic in March 07 when the local doctors, (Ontario, Canada), could not confirm the diagnosis.  At that time, she was not permitted to have a liver transplant because the tumor had entered the portal vein.  (The detailed version of this history / experience can be found on http://tammyhealth.blogspot.com )

She responded well to chemotherapy, Gemcitabine (Gemzar) / Capecitabine (Xeloda), and also had what seems to be a successful result from a radiation treatment in Toronto at Princess Margaret Hospital.  Overall she was stable and doing very well right up to a period very recently, early Feb 2008. 

She had a routine replacement of her stent at the end of January 2008.  During the ERCP procedure the doctor noticed that she had some bleeding in the stomach.  Tammy also admitted that she had noticed that her stools had been much darker during this time.  What we did not know was that during this procedure she got an E.Coli infection in her blood.  The bleeding was caused by portal hypertension, which we now know is from the tumor moving from the original site and placing additional pressure on the portal vein.  She ended up in the hospital during this period for 3 weeks and had a pigtail catheter inserted to drain the ascites.  They found several locations of the bleeding in her esophagus and stomach and performed  endoscopic band ligation on her esophagus and argon laser treatment on her stomach.  She also lost 35 lbs during this period and a good deal of her strength.

A recent MRI has indicated that the original tumor location has shown a reduction in size, but that it has had a great deal of growth in the area around the portal vein.  Tammy has had problems with blood clots since the beginning of this process and we have been told that her entire abdomen is filled with many verticies created by the blood finding alternative paths.  This complicates many things and eliminates the chance for brachytherapy or any form of surgery.

They have done all that they can do to stop her internal bleeding, but her red blood cells are still dropping very quickly, (indicating some form of internal bleeding). 

She had to go off her chemotherapy during her time in the hospital, and her CA19-9 which had been stable in the sub 100 level for quite a while has now shot up to over 1,500.  She started back on chemotherapy last week and during a blood test they found that her Potassium was excessively high. 

A few days ago she hit rock bottom and determined that it was not worth fighting any more so she stopped chemotherapy.  At the time she had a hemoglobin of 77, (and dropping about 2-3 points a day), high potassium, a tumor that was growing aggressively and a very tired and weak body.  She convinced herself that this was going to be the end and made peace with that decision.  She checked herself into the hospital so that her pain could be dealt with. 

When in the hospital she got a bit of rest and decided to take another attempt at beating this nasty disease.  She took an additional 4 units of blood (last night) to get her hemoglobin up, drank a nasty suspension to reduce the potassium, is scheduled for a scope to reduce the bleeding on Monday, and also scheduled for chemotherapy on Tuesday. 

Her oncologist, (Dr Major), has indicated that her existing treatment was working before, but had started losing its effectiveness.   They were also not able to run at the full dosage since she was having problem with her reduced white blood cell counts after treatments.  He suggested adding another agent to the Gem/Cap mix, ("T" something), but really didn't have any other options.

I am willing to take her anywhere to get the best treatment in the world, so we are not limited to just getting treatment here in Canada.  Her situation is more complicated than others due to the complication with the internal bleeding.

Questions

1) Is there any other chemo combination she should be looking at?

2) Has anyone on this board had success with dendritic cell therapy or Davanat?  (These are 2 of the "miracle" cures I have been holding out hope for).

3)  If you thought you had only one last thing you could try... what would it be?

Thank you in advance for any thoughts that you are willing to share.   

We have been lucky that we have a good extended support network, but we don't have an extended CC knowledge network, (other than reading this wonderful web site and discussion board).

Ron

My wife and I met with Dr Gores at the Mayo Clinic, (Rochester), and she was considered for a liver transplant before they discovered that the tumor had spread to the portal vein.  I found him to be excellent to deal with.  He was straight forward, but very caring. 

I know that he mentioned that your blood type is the one thing that determines how quickly you are likely to get a transplant.  Type A is normally a bit quicker than type O.  (I guess there are more livers available that are type A).  I don't recall any specific comments about B or AB blood types.

Hopefully that helps.

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(2 replies, posted in Blogs)

JeffG... I had to go back to see what kind of radiation Tammy had.  She had IMRT - Intensity Modulated Radiation Therapy.  30 treatments, one each week day over 6 weeks.

My wife Tammy has also had several blood clots due to her CC.  They were in the area around the portal vein, and 2 other areas as well.  This caused her a great deal of discomfort and helped the doctors diagnosis her CC.  She has been on Fragmin every day since February 2007.   Once they got the situation under control, (about 2 weeks), the pain has subsided.  Her body created many hundreds of extra pathways for the blood to travel and this is causing additional difficulty to see the area around the portal vein and the actual area of the CC tumor.   Just a few weeks ago she had to go for a special test (Contrast Enhanced Ultrasound), where they inject air bubbles into her veins so they stand out on an ultrasound.

I understand that this is quite common with CC as well.

Thank you Stacie, Joyce & Jeff.  I already feel like part of the family.  I strongly suggest that any one else who has not introduced themselves do so... 

I managed to get myself into trouble with my posting.  I know my wife is only 46, but somehow I managed to put down that she was currently 47, (which is my age).  I thought I was so careful with the details.  I also can't edit the title so I am stuck with this....  Oh well.

Ron

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(2 replies, posted in Blogs)

Blog for Tammy Neumann:  http://tammyhealth.blogspot.com

You can see my introduction post and background here: http://www.cholangiocarcinoma.org/punbb … hp?id=1035

My name is Ron Neumann [RonN] and this is my third attempt at writing this introduction for my wife, Tammy.  Like many others I have been spending time reading this site, but not contributing.  I have been lurking on the site for the past 7 months or so.  It feels good to finally jump in.

I apologize for the length of this post in advance