pat_los_gatos
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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.
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,
MarionMary’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
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. http://www.lamey-hughes.com
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
