All, I wanted to provide everyone an update.  Sadly, my mom passed away last night in St. Louis. She was surrounded by her family and friends.  She could hear us nearly to the end and we know that she is now safe.  We are stunned and everyone that knows her (or even saw her 3 weeks ago) cannot believe it. 

Through a referral in Chicago, we are making contact with the Center of Cancer Research (National Institute of Health) to learn from this disease and hopefully, unlock a new clue that can help others.  We have reached out to Dr. Thorgeirsson today and are getting an autopsy underway ASAP.

If anyone knows Dr. Thorgeirsson personally (I have sent him an email), please let him know that we are working toward giving him any information that he needs.  I'm hoping to hear from him soon but we are working with his team to send them what they may need.

I'm grateful for the support, help and kindness that this patient forum has provided.  Hearing your stories and having you as a part of this terrible event has softened the blow and given me some peace.  I wish everyone the best and hope that my mother, Ellen Spengemann, can help your loved ones and others to come to have a good, solid fighting change to beat this cancer and live life as it should be.

Love to you all,
Rebecca Donohue

All,

Just wanted to provide an update regarding my mom and thank you again for your support.  Sadly as I write this, I'm on a plane back to St. Louis to be by her side.  We received devastating--reeling--news today that her liver has begun to bleed and that we need to consider hospice options.  Chemotherapy is no longer an option. 

Our friends and family look at us in disbelief.  We are in disbelief.  This is an incredible, strong woman who was full tilt into Christmas and never missed a beat.

We will keep you all posted but thank you for your prayers and kind thoughts.  We just can't believe where we are right now.

Rebecca

Kathy and everyone:  thank you!  thank you!  I've gotten the Johns Hopkins information to my day and as power of attorney, he will be contacting Dr. Choti (and we have Dr. Catennaci underway).  I'm grateful for how responsive and emotionally involved everyone is in this patient group. 

Tonight, I feel like I can rest a little easier knowing that we are trying to get answers and do the right thing--and that we are not grasping for straws.

Thanks to everyone and I will keep you posted.  You are a fantastic group.

Best and feeling incredibly lucky,
Rebecca

Thank you all of your support and incredible advice.  It feels like I already have another family extension who can help me (and my family) sort this out.  The St. Louis oncologists have recommended that she go home and live out her life which is now estimated at 6 weeks (on the generous side).  We were blown away when we heard this information.  The team felt that she was not strong enough for chemotherapy and that she may not make it through chemotherapy. 

Thank you for the Chicago referral.  My father's prostate cancer doctor has the file and is sending it to University of Chicago--it's incredible how things come together and we believe it may be the doctor that was mentioned.  We are scrambling for a second opinion, trying to be respectful of my mom's wishes and keep our spirits up in front of her. 

We are looking for a Johns Hopkins referral--I've started making phone calls to get her file in front of someone.  If anyone has a specific Johns Hopkins referral, I would be so grateful.

Thank you all--it is clear that everyone at this forum is amazing, helpful and overall, finding a way to understand and cope with this disease.

Rebecca

I just joined the foundation and am grateful that I stumbled across this in all of my google searches.  My mom, who is 68, was diagnosed with metastatic cholganiocarcinoma, in either late stage 3 or stage 4, and it's been a disaster.  We are all trying to wrap our heads around this, manage questions from concerned family and friends while staying focused on getting her medically stable. 

In short, everyone (including her internist) thought she had the stomach flu in early January.  After 2 weeks, she was getting worse and by 2/9, she was jaundice, in pain and weak.  We quickly checked her into a fantastic local hospital to find out that we had a cancer situation--first they thought it was liver, but then it was pancreas, then it was gallbladder.  We finally found out that it was a bile duct and that it spread to the majority of her GT tract.  A stent didn't provide any relief and as of 2 days ago, she received a side drainage option.

Our oncologist isn't optimistic.  She feels that surgery is out of the question, radiation would put her liver and overall health in worse risk (she is bloated, barely able to talk and on morphine right now) and that once she gets out of the hospital, we can talk about chemotherapy but it would only increase her life in a small increment that may not be worth the side effects.

I'm sure that this story is not uncommon but we are scrambling.  We are sending our files to Northwestern in Chicago and Johns Hopkins to get another opinion.  Our rational brains are working but we are emotionally lost and while we have rally cry that we will fight this, our information is incomplete and we are lost. 

I am writing for any insight...suggestions...help...anything for us to grab onto and turn this around.  We have two paths underway:  1.  BEATING this and 2.  being realistic and focusing on my mom's happiness. These two points are in direct conflict which is why we are so lost.

Any thoughts or recommendation is a blessing.  Thank you.