kentuckyjack

For the greater part of 2010 I was treated by the physician staff of Barnes-Jewish Hospital/Washington University Medical Center of St. Louis, MO. I’ve changed to another hospital in St. Louis for further treatment at this time.

My main treating physicians at Barnes were:

Dr. David Linehan, whom I refer to as the “happy cutter”, an hepato-biliary surgeon of excellent reputation and highly experienced at liver surgery. He twice reviewed me for possible liver resection but unfortunately both times he found that the IHCC tumor mass had infiltrated too far into the liver vasculature to permit a likely outcome of surgical success–if I understand him correctly. The reason I refer to him as the “happy cutter” is that he seemed to me to be almost enthusiastically happy when surgery seemed a likely possibility, but spoke to me very little and much less joyously once surgery was ruled out. He seems to truly enjoy his surgical work! Can’t say enough good about him, except I wish he could have done the resection.

Dr. Benjamin Tan, whose specailities include medical oncology and hematology. He oversaw the chemotherapy administered to me this year, and the outcome was reported as quite successful, having shrunk the “huge” single tumor by about one-half in size from 10+ cm to about 5+ cm .over the course of treatment in spring, summer and fall of 2010. In all honesty, his course of treatment has led me to state that Barnes has the best scientific-based (AMA and FDA-approved science, I might add, for better and for worse) presently available for cholangiocarcinoma in the St. Louis area. My experience with Dr. Tan would lead me to agree with another reporting here that Dr. Tan seems somewhat conservative in his approach to treatment.
I have also consulted with another Barnes phycician of exceptionally high repute, who said to me “Unfortunately, we have not been very successful in our consertavive approach to treating Cholangioncarcinoma, except for surgical resection where possible. Therefore, you have little to lose by pursuing alternative treatment methods.” This means that in the understanding of some of the best minds at Barnes, they are applying treatments which are unlikely to be completely successful, and yet by adhering to conservative methods, they are closing their minds to alternative methods which might work.
Dr. Tan has repeatedly told me that no patient suffering from cholangiocarcinoma and being treated by Barnes has survived more than four years after the date of the original CC diagnosis–unless the patient undergoes a successful surgical resection. All that being said, Dr. Tan is, as yet, the only physician with whom I have encountered a personality conflict severe enough to require me to seek treatment elsewhere. I am now being treated with chemotherapy by a medical oncologist at another local St. Louis area hospital.

Dr. Robert Myerson, Professor of Radiation Oncology. An excellent and persuasive communicator, with a great knowledge of radiology, cancer, and with the patience required to answer many of my questions about radioembolization and stereotactic body radiation therapy. He and his associates designed and administered the five SBRT treatments in a clinical trial during August and September 2010. Follow-up is to be scheduled.

When one member sings high praises of an institution and presumes to speak for another member, who has had mixed results, the one spoken for has no choice but to correct the member, in this case jathy1125 regarding Barnes Hospital in St. Louis. Sorry jathy 1125, I have been treated by Barnes but not by Dr. Chapman, and I’m afraid the jury is very much still out on my positive thoughts about the outcome. Please do not presume to speak for all others or to speak for me on this one. Thank you for your consideration. -Tom

Cathy-

Like you, I’ve been a patient at BarnesJewish/Washington University in St. Louis, unfortunately not a patient of Dr. Chapman. Interestingly, I received a needle biopsy at St. John’s Mercy last Jan-Feb, 2010, to diagnose the IHCC. When I went for a second opinion at Barnes, the surgeon was initially very enthusiastic about doing a resection, but the MRCP “final test” before surgery proved that the tumor had invaded the blood supply too extensively for surgery after all–or so they said. They further explained that I would not be eligible for a liver transplant, but declined to say why. Thanks to this thread, I now know why.

I would not accept or be interested in a transplant, anyway, and I told the Barnes docs that. I’ve just had too many chronic illnesses and conditions which require a healthy immune system to combat, and I don’t want someone else’s liver if it could go to a healthier recipient. I have recently read of first success at growing fresh new livers from something related to stem cells, but so far they’ve only grown “mini-livers”–not yet usable size to be effective for transplants. Now I would indeed want one of the livers made from cells donated by my own body.

As I am now going back to St. John’s Mercy for a consult with their chemo oncs, it will be interesting to hear what they have to say about needle biopsies and liver transplants, if anything other than “we’ll have to refer you to the surgeon for that answer.”

Thank you and Ashley SO much for sharing your experiences, and providing the facts on this. God bless you and your transplants! And may the peace of Christmas flood your lives. -Tom

Lainy:

I’d say so sorry about your loss, but now look what you’ve found!

I saw my father smiling at me from a mirror in a gym I used to work out at, within a few weeks after he crossed over. Given the close proximity of an attractive young woman and the question of who, for certain, he was really smiling at, I didn’t tell Mom right away. But he let me know that he was still around across the line and as real and happy as he always was. There is so much we don’t know about what lies beyond, but the wink from your Teddy and the smile from my Pop lets me know that our loved ones are indeed there and still here at least at times. God bless you and Teddy and your good fighting spirit! (Pun intended, now you really do have a good fighting spirit right there with you)

Margaret: Two major things to consider.

From my psychology classes “Father Freud” described anger and depression as something like twin edges of a sword–and it can cut either way (not an exact quote–just my best recollection 35 years later). Depression is “anger-in” or anger directed at one’s self, blaming one’s self for feelings, thoughts and behaviors. Sometimes, to fight depression, the patient has to redirect his anger outwards (anger-out), blaming others or outside circumstances for his own thoughts, feelings, and behaviors. Anger directed outwards is possibly irrational, but can be motivating to get the patient to start doing something, and then that something can be self-reinforcing and ego-building so the patient experiences less depression. Can be painful for the caregiver, though!!

On the other hand, physiological depression is a different beast. I’ve had Gemzar, oxiliplatin, and Xeloda followed by radiation and am now again on Xeloda. After the chemo and radiation I developed anemia–low iron/low red blood cell counts, inadequate oxygen getting to the brain, organs, muscles, and bone. This made me very very tired all the time, and when awake fight to stay awake and participate in life. That state of low blood oxygen and not being quite awake seems to make me prone to anger and depression and verbal outbursts which has alienated friends and family. At times nothing has seemed to work. I got an iron infusion and a blood transfusion, and they helped a little bit. If I could get myself to the gym, the heavy breathing caused me to suck in more air and get more oxygen and that energized and awakened me, but the next day I was very fatigued sometimes, and I began to pant instead of breathe normally after exercise, which is a symptom of anemia. Its just going to take time to rebuild, I suppose. I’m sure other medical conditions can cause crabbiness and fatigue besides the ones you and I have mentioned to this point.

Hope this perspective from another crabby old patient helps you cope with your man!

Kris:
God bless you and give you a successful treatment in hospital!
-Tom

Diane:

I was a candidate for radioembolization (radiation therapy) using microspheres, scheduled at Barnes-Jewish Hospital in St. Louis in August, 2010. Turned out that my liver’s left lobe was too atrophied to handle the sphere insertion, after all, so I ended up in Sterotactic radiotherapy instead.

When initially evaluated, I had Blue Cross/Shield (Anthem) insurance–and they were apparently going to cover it for one of the two available types of microspheres–the sir spheres were one of the two options, I remember. I do not know which the insurance would pay for, and which of the two they would not. But the docs said they would pay for one of them. Hope this helps.

God bless you and yours.

-Tom