Mary presented the initial symptoms on March 22, 2009.  She was eligible for and elected the liver resection and she made the best of the remaining months.  On Feb 22, all the indications were that the CC was in total remission and she would be one of the fortunate few who had several more years.  Unfortunately, by March 15, it was clear things were not right.  She was re-admitted to Stanford on March 26 and on March 31 the attending physician told me I should assemble the family.  Her kids from Pasadena, Tucson and Pennsylvania and my kids from Denver and New York along with all of our grandchildren arrived less than 24 hours later. 

Mary said goodbye to each of us in turn. Her last lucid comments were on Easter Sunday (April 4).  We had a "take out Easter Dinner" in the hospital although Mary could not join us from her room. After dinner, she talked to each of us although it was only a few words.  She was most loquacious to the grandchildren.

By Monday, she was uncommunicative and unresponsive.  And, although we had made plans to move her home, the doctors were advising us that she would not make the trip successfully.  Each of her children, her sister and I worked 24x7 shifts to make sure she was not alone. 

Mary spent the last 15 years worrying and taking care of her heart. Proper food, good cholesterol numbers, blood pressure management, you name it. Well, her heart and lungs kept working until April 8 even though her liver and kidneys had failed several days before.   Finally, on the afternoon of April 8, she drew her last breath and her heart stopped beating. 

I wrote on her crematorium container:
Mary, my love
Let your itchy feet carry you
to new and wonderful places,
Let your spirit hold
and keep our love,
All Ways and
Always,
Pat

2

(15 replies, posted in Good News / What's Working)

When my spouse was first diagnosed with CC, my cousin who is an MD in Minnesota literally came through the phone line screaming at me to get Mary's records to Mayo ASAP!  They are very used to reviewing files of patients and making assessments if they can do anything for the patient.  Files can be transmitted electronically and that means a Mayo opinion is only a few days away. 

On a different note, my wife's liver surgeon, Dr Brendan Visser of Stanford, did his Fellowship at Univ. of Edinburgh in UK Hepatobiliary/Pancreatic Surgery in 2006. You do have other great talent on that side of the pond! 

Good Luck.

Last week, Mary's Oncologist asked to give her a hug and then said, "Go live your life, you are cancer free." 

I don't post regularly so the short form history is:
Symptoms present March 22, 2009
Two ERCPs at Good Samaritan in San Jose were inconclusive. Doctors honored our request for a referral to Stanford.
Two more ERCPs at Stanford (Dr. Bannerjee) and still inconclusive. However, horrible abdominal pain led to laparoscopic gall bladder removal (Dr. Brendan Visser) in April.  Judged clean in the OR, the lab work confirmed cancer five days later.
Liver resection removed 78% of Mary's liver in May 2009 by Dr. Visser.
28 Radiation treatments plus Xeloda chemo in July-August by Dr. Daniel Chang, radiology oncology and Dr. George Fisher, Oncology. 
In October, Gemzar started and stopped after two treatments--it destroyed Mary's bone marrow.  Again, Dr. George Fisher, Oncologist. 
November-December battery of tests: Negative for cancer. However, Mary was suffering intolerable back pain.
Reran all tests in February.  Still had back pain, but the visit with the Oncologist lead to the hug and good wishes--cancer free! 
Mary is now in the care of Stanford's Pain Center. The proposed diagnosis for the back pain is either facet joint arthritis or nerve damage from radiation therapy.  She has a "Medial Branch Nerve Block" set for Wed morning to relieve the pain, hopefully. 

You can read our entire history of this journey at http://www.lamey-hughes.com 

God Bless

4

(1 replies, posted in Blogs)

http://www.lamey-hughes.com

We had incredibly good news a week ago. Mary's Oncologist at Stanford gave her a hug and a peck on the cheek and told her to go live her life, she is cancer free!  This homepage links to our blog which started March of 2009.  We have been exceptionally fortunate in our journey with cholangiocarcinoma. 

And, yes, we both know that "cancer free" most likely means its too small to detect with MRI, CT Scans, PET/CT Scans, x-ray, blood tests and whatever else at this time.  But for now, we have incredibly good news.

Answering your questions:
Dr. Fisher did send (or at least he told us he would send) all of the test results to the IR (Interventional Radiology) docs to see if they thought they could do anything. It has been seven days as of today and we have not heard from the IR department. We are assuming they do not see a path of success given her situation.  After all, it took xRay, MRI, bone scan and a combo PET+CT to arrive at the "no cancer" verdict.  Mary's surgeon, Dr. Visser told us the artifact on the bone scan and MRI was classified by the pathologists as TSTC aka "Too small to classify."  The combo PET&CT simply excluded cancer, it apparently didn't give an unambiguous interpretation.  Which is why they sent all those results onto the IR doctors. 

Clarifying, after surgery, Mary had a full course of daily radiation plus Xeloda for a total of 28 treatments ending in mid-August.  She had some rough spots after radiation but by the end of September to early October, she was in the "feeling better than 80% of normal" league.  Then the Gemzar started.   

The follow on Gemzar was specifically ordered by Dr. Fisher because of the data from the Japan report and he cited the 5 year improvement rate as the reason for recommending the Gemzar.  We now know Mary and Gemzar are not compatible. 

We are very hopeful the vertebrae is capable of healing itself and Mary will be closer to normal sometime in early February.  We may still hear from the IR docs and if we do, we will have the consult. I cannot say if we will do any techniques depending on the info they provide.

You are probably thinking, "Why don't they call to find out why?"  Frankly, we are overloaded with visits and trips to see doctors and have tests and procedures run.  As Mary has said, "Its getting a bit too much when the lab techs in the blood department all know me by name."  A couple of quiet weeks and we may get back to it if Mary's pain isn't behaving.  In fact, that was Dr. Fisher's recommendation:  Stay away unless you need something from us.  We will leave you along so you can take the time to heal.  We'll see you in March. 

Thanks for responding,

Pat

PS: Do you live on the San Rafael Bridge?

marions wrote:

Hello Pat. ...my aunt (90 years old) had her compression fractures treated with Vertebroplasty/Kyphoplasty.  Is that an option for Mary?  I recall Mary being treated with Xeloda and radiation beads post surgery and I am wondering why Dr. Fisher had thought to include Gemzar in the follow-up.  Is it due to the negative margins?  ...  In the meantime I am hoping for Mary to have less pain real soon so that she can get back to the "normal" she had experienced before the Gemzar treatment. 
All my best wishes,
Marion

Does anyone else have info on this Japan study or use of similar treatment for surgery survivors? 

This isn't the direct link. I had it once but I lost it. This article does recap the work done in Japan.  And I haven't seen it referenced on this forum, perhaps I just missed it.

http://www.allbusiness.com/health-care/ … 827-1.html

The bottom line is that the five year survival rate jumps from 23% to 57% if a course of gemcitabine is completed after liver surgery (partial removal) and radiation/chemo.  Albeit, this is a very small sample size of cases it is interesting information. 

Mary's Oncologist at Stanford, George Fisher, is apparently on top of all this for  he started telling us about it in September even though the paper was only published the prior month. He recommended this chemo as Mary's strength increased after she had completed the radiation+oral chemo in August. 

She started gemcitabine in October. 

The bottom line is that the gemcitabine destroyed Mary's bone marrow after only two injections (week 1 and 2). In week 3 they gave her a transfusion of 2 units of whole blood because her blood metrics were in such bad shape.  Subsequently, she will not restart the chemo because the impact to Mary is so negative. 

Apparently, in the middle of all this, Mary developed a horrible upper back pain.  They focused on that with xRay, MRI, bone scan and a simultaneous PET+CT combo scan plus tracking CA-19-9.  The conclusion is that there isn't cancer present in the vertebrae.  What is diagnosed is a "compressive fracture of a thoracic vertebrae."  The source is unknown, but we suspect 1) Mary's Osteoporosis history coupled with 2) six weeks of radiation and 3) some weakening of the bone due to the bone marrow damage caused by the gemcitabine treatments. 

Before the gemicitabine, she was darn close to being normal in her energy and behavior. One day she baked up dozens and dozens of cookies for the expected Thanksgiving visit by our adult offspring.  Now, she is on a fentanyl patch and Celebrex to manage the pain in the upper back which makes her sleepy and lethargic. And, the fentanyl messes up her digestive tract like all narcotics do to her. The patch makes it much less but still messed up.

The current recommendation is to give her the nominal 8 to 10 weeks to heal the vertebrae and then head back to the Oncologist to see if there is any new news...a surveillance visit as it is called at Stanford.

Does anyone else have info on the Japan study or similar treatment for surgery survivors?

7

(187 replies, posted in Hospitals)

Mary's surgeon for her liver trisegmentectomy was Dr. Brendan Visser of Stanford.  Mary's oncologist is George Fisher of Stanford.  You can find them both by putting their names along with Stanford into your google search window.  It is actually faster than using Stanford's own search engine.

Mary was told those wonderful words at the end of September "in remission." 

A quick history.  Our specialists at our local hospital suspected CC at the end of March 2009 and referred her to Stanford.  Multiple ERCP procedures at both hospitals were inconclusive but they did place stents to minimize pain.  Stanford confirmed CC from the path reports after a gall bladder laparoscopy at the end of April performed because of a distended gall bladder.  Stanford removed 80% of her liver in May but the path report did not declare clean (negative) margins.  Therefore, they blasted her with daily radiation and daily oral chemo capecitabine (Xeloda

9

(23 replies, posted in Introductions!)

Hi Rick,

My spouse's CC presented itself at the junction of the cystic duct and the hepatic duct. It squeezed the cystic duct causing the GB to expand and the pain of that stretched bladder triggered GB laparoscopic surgery.  In the prior two weeks, Mary had 4 ERCPs at two different hospitals with two different doctors, stents were placed BUT the ERCP path reports were negative. The presumptive diagnosis was CC but there was no justification for further work. Then, the GB pain became so great something had to be done. The pain went from feeling fine to level 10 in about eight hours. 

The path report from the GB removal was negative in the GB and the cystic duct.  However, one of the several lymph nodes presented cancerous material so a liver trisegmentectomy was scheduled.  On May 11, they removed 80% of her liver and did a Roux en Y to connect her stomach, remaining liver and intestines together.  That path report confirmed CC throughout the liver and also reported inadequate margins for the CC.  As of this week, she is completing her six weeks of chemo and radiation therapy.  Then she gets a break and we decide on further chemo at the end of September.

The bottom line is simple. The external tests never confirmed the presence of CC. The GB and cystic duct were clean. It was the lymph node from the GB resection that confirmed the cancer. 

Feel free to peruse her story on our website. www.lamey-hughes.com

10

(11 replies, posted in Introductions!)

I am truly sorry to hear about your mom's situation. 

When talking to the GI specialist at Stanford, he said that the nerves in that part of the body did not generally signal pain except the nerves that report stretching of the gall bladder. Its one of the reasons CC is so nasty because the only symptoms appear after the tumor is large enough to block the flow of bile in the ducts.  Even then, there is no pain directly from the tumor, rather the pain comes from the jaundice and other effects of the blockage. 

Your Mom is 'probably' not feeling sharp pain. Rather, she is feeling the discomfort and pressure from the effects on the various internal organs. 

One thing to ask about is her electrolyte balance.  Given the function of her organs, she may have imbalance in potassium, sodium, etc. that may be affecting her cognitive abilities.  Anyway, it can's hurt to ask. 

Pat

11

(4 replies, posted in Introductions!)

We've had an amazing journey starting March 22 of this year and we know it is not over.  The basics are that my 62 year old wife had symptoms we thought were flu until she turned jaundiced at the end of the first week.

It then took five weeks, four ERCPs, three GI Specialists, two hospitals and one surgery to confirm the diagnosis of CC.  Two weeks after the path report from the  laparoscopic gall bladder removal (first surgery) confirmed CC, Mary had a hepatic trisegmentectomy where they removed 78% of her liver and performed a Roux en Y to connect her intestine to her remaining liver (left lobe).

Both the laparoscopic gall bladder and the hepatic trisegmentectomy were done by Dr. Brendan C Visser of Stanford Hospital and Cancer Center in Palo Alto CA.   

The path report from the May 11 surgery confirmed CC Stage T3 exhibited as klatskins and confirmed the common bile duct, hepatic duct and right hepatic duct were cancerous. They also reported the removed left hepatic duct did not exhibit adequate margins. 

Mary was discharged last Saturday and our first follow up visit is Friday morning.  Dr. Visser placed fiducials (gold drops) in anticipation of radiation treatment, presumably cyberknife but I won't know that until after our morning appointment. 

The whole story is on our website and blog. I understand you can click on the "website" link to the left to read all the details.

Pat of Los Gatos