BettyAnn:  I call it gastritis, and I have experienced it both as a sufferer of acid reflux disease and a side-effect of both IHCC and SBRT, an experiemtal treatment for IHCC.  Recently I had to insist that my chemo onc refer me to a gastroenterologist for an upper and lower GI, and the gastrodoc discovered a small ulcer that appeared after the experimental radiation treatment.  I've suffered from gas that cuses back pain and swollen belly pain, like you.

The GastroDoc said that I should stay on omeprazole, as I do have acid reflux disease, and he had me double the normal dosage for 2 weeks to ease it up more.  I also take tagamet.  He did not, however, address diet, which he should have--lots of coffee blows me up like a balloon, for example.  There is a diet, called the GERD diet, which heps you with with acid reflux symptoms.

My best advice however is to see a gastroenterologist.

Good luck!

2

(186 replies, posted in Hospitals)

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.

3

(14 replies, posted in General Discussion)

Rick, I am sorry for you ascites and your pain.  During the past few weeks I have developed severe pain at the site of the SBRT radiation and connecting right through to my mid back.  The onc said that I had also developed some edema in the area, but did not specifically label it at ascites.  I've been given vicoden and oncycontin for the pain, which helps.  Its good to hear other members mention that ascites hasn't always necessarily been a prelude to the "end" even though that would solve the pain problem?  God bless you and your effforts.

4

(19 replies, posted in Introductions!)

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

Gavin-

This study and its results formed the basis for a subsequent clinical trial in which I am enrolled, conducted at Washington University/Barnes Jewish Hospital in St. Louis, MO.  They've upped the dosage to 55 gray in five fractions of External Beam/ Stereotactic Body Radiation Therapy.

6

(21 replies, posted in General Discussion)

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

Stacey:

Two days ago my chemo oncologist (at the same institution where you are receiving treatment) and I parted ways.  His communication style is rooted in another culture than my own, and I felt that his communications reflected a possible personality conflict and a "giving up" on me as having the potential to recover from IHCC.  He expected me do die, and he'd done all he could to extend my life, he needed to withdraw from his previously closer involvement with my case.  At least thats how he seemed to be coming across to me more recently.  Please understand that this perception is highly-emotional and possibly not a rational or reasonable reaction to either his intent or his actual treatment of me.

That being said, I believe that both the radiation and  the chemotherapy I received was the best, most effective, scientific-research-based treatment that is presently available in the St. Louis area.  Nevertheless, I am proceeding to go back to St. John's Mercy to consult with one of their oncs about further treatments.  I know that even if the odds are against me, there are people there who will at least be praying for me, and at this stage that means much.  I'm going to St. John's knowing that their standing with the National Cancer Institute is not as strong as Washington University.

You have many fine researchers in oncology at Barnes and the ground shifts in research every day.  If they are changing their plans, that may mean that they are staying on top of breaking new research, or that they are consulting with more and more specialists about the challenges of your dad's case.  Dr. Meyerson in radiation oncology has been a patient and clear communicator with me, so if the picture on chemo and radiation continues to blur, you might ask for an appointment with him.

I sincerely wish you all the very best in treatment and in your communications with the oncologists.  God bless you.

-Tom

8

(25 replies, posted in General Discussion)

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)

Janet:

Two recommendations are the book "Knockout" by Suzanne Sommers.  And the Life Extension Foundation--they have naturopathic cancer specialists (2) available to talk with by telephone, their membership is still $75 per year I think, and they sell many different supplements on-line that help to improve cancer-fighting odds for anyone who cares to try.  They've helped me. (and Andie's list has many supplements that he's used to fight cancer.)

10

(41 replies, posted in General Discussion)

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!

Gissy:
I was on oxaliplatin/gemzar/Xeloda for 3 1/2 months before my blood counts got too low and my chemo onc had to give me a break.  I think how long you can take a given regimen is directly related to how well your body can stand up to the toxic chemotherapeutic agents.  And how long before you go back to chemotherapy depends upon how long your body takes to rebuild itself.

As for second opinions, getting a second opinion from a doc who has good experience with bile duct cancer can improve the odds greatly!

God bless you and yours.
-Tom

12

(19 replies, posted in General Discussion)

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

Kris:

3 1/2 months of Xeloda/Gemzar/Oxaliplatin from March to June '10 here.  To the extent I can still feel with my fingers and toes, I know exactly how you feel with the cold!  I seem to have neuropathy now, or something like it, as the numbness anf tingling in hands/feet has increased in July-Aug-Sept...after therpy was suspended!  But the black-hearted evil tumor shrank!  The good news for me is that the chemo onc says he's not planning to continue with oxaliplatin when chemo eventually resumes.

Don't forget to wear your gloves when going into the refrigerator!

Blessings.
-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

15

(25 replies, posted in Introductions!)

Rick:

Thank you for sharing with all of us--regardless of the cause, it is what lies ahead for all of us at the appointed time.  Debbie is blessed by your loving support now.  God bless you both as you go through this together.

-Tom

16

(25 replies, posted in General Discussion)

Lainy:  I'm really glad to see  the advice on the hospice in your area and your expressed relief at getting it.  You and your Teddy are getting the loving informed support you need now as you have so often given.  Sometimes when reading the supportive messages to you from others in or faimiliar with your geographic locale--I sorta wish I lived there, too.  So very grateful that you're getting the  help you need to help Teddy.  Wish I could do more.

God bless you and Teddy.

-Tom

17

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

Hi Capodad:

First. let me update you on my experience with coriolus versicolor--I had liver pains, quite literally when taking it, backed off a while, then went back on at a lower dosage, and when I upped the dosage, the liver pains came back.  I mean real pains in the liver, no doubt.

I took the turkey tail /coriolus versicolor knowing that I had tested positive to yeast/mold allergy years back, and since mushrooms are in the same general category as yeast/mold/fungus, I knew I was taking a risk.  My MD commented that something had caused 2 of my liver enzymes most closely ralated to liver damage or disease--to increase significantly since I started the mushrooms. I also read of a report out of Sloan-Kettering that although the mushrooms could be beneficial, there were a few reported instances of liver damage.  So I discontinued the mushrooms.

Most people don't have the allergy, and my response is in the extreme minority--just felt obligated to update you since I provided some information to you initially.

Otherwise for dosages of supplements I rely heavily on the telephone hotline to Life Extension Foundation and to the cancer supplementation  protocols they share with me on request.  Their cancer specialist--there are two Naturopathic Doctors-- calls me back when I call in, and provides guidance as his time permits.  I'd feel most comfortable suggesting that you contact L.E.F.rather than attempting to give you dosages my self.  Every patient deserves to guidance of a professional in this area if possible.  I'm still afraid to misguide someone else and cause harm.

God bless you and your ex-wife and all of yours.

-Tom

18

(4 replies, posted in General Discussion)

Hello again Victoria:

Whoops!  I'm more than a bit prone to overstatement at times.  I was reading today about a cancer cure some alternative health practicioners really put stock in, and the author was such a believer that I took on a little bit of his tone when addresssing you.

I really do believe that the powers that be--as discussed-- have a seriously limiting effect on the breadth and depth of all research--including that on cancer causes and treatments.  But I do not personally have the evidence which would allow me to conclude that any are deliberately withholding cures that have been proven to work.  I have read of alternative practicioners who present evidence of such claims, and I believe some of them may indeed be true--but I am not a personal witness to the accuracy of their claims.  My personal experience with the medical/political/academic establishment has, however,  rendered much more believeable to me the likely truthfulness of some of their claims.  The development of whatever comes to be accepted as scientific truth can be a very disturbing process. 

I truly hope for you and Ned that as your research continues, the treatments selected will yield the best possible outomes.
God bless you and your Ned.
-Tom

19

(5 replies, posted in Chemotherapy)

Hello Alv:

My experience with chemotherapy is that the oncologist had to stop it after 3 1/2 months because my immune system was threatened by the chemicals, despite success at shrinking my tumor.  The red blood cells counts, white blood cell counts and platelet counts were low probably because the bone marrow where they are produced was incurring damage.  Meanwhile, they switched me to radiation, and tentatively plan to put me back on a more restricted chemotherapy regimen a little later, as my blood analysis improves.  Also they have to consider the likelihood of permanent side effects from the chemo versus the benefits of the chemo on shrinking the cancer.  Hope this helps.  God bless you and your dad.
-Tom

20

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

Nancy:

What wonderful news for you and Ron.  Hearing such news from the long-term survivors gives us all hope.  Thank you so much.  God bless you ALL!
-Tom

21

(9 replies, posted in Introductions!)

Hello Kmwmsm:

Welcome to the cc club that nobody wants to join--but you will find informed loving support from many people on this board and posters to this board, as I have.

You may become your husband's treatment advocate in addition to the emotional and spiritual support I know you are trying your best to give him.  The information and links you'll get here will help you learn more about treatment options from surgery to chemotherapy to radiation to alternative treatments to naturopathic supplementation.

My male perspective (an old man's) is that I appreciate information as well as loving support--when I'm able to take it.  I guess being patient with the patient to come around is the task upon you, and sometimes only God can give you that!  Your husband is truly blessed with a wife to lovingly care as you do.

God bless you and yours.

-Tom

Hello Sallypa:

Having now been through chemotherapy and radiation because my big tumor is unresectable, I envy the problem your sister has now.  Thank God she was able to have the surgery.  I don't have any guidance to offer on the specific protocol your sister has planned for her, but if it is through a facility that has a lot of experience in dealing with bile duct cancers, that would reassure me.  I will say that the Gemzar/Oxaliplatin/Xeloda combination shrank my big tumor by 1/3 to 1/2, so one or more of those drugs in combination worked for me.  The jury's still out on the success or failure of the radiation for me yet.  Had I been lucky enough to qualify for surgery, I would have asked for adjuvant chemo/radiation, and Praise God she's getting a shot at it!

Sounds like you sister has a wonderful advocate in you.

God bless you both.

-Tom

23

(11 replies, posted in Introductions!)

Dear PLJC:

Welcome aboard to the cc club!  So sorry you had to learn so much the very hard way about second opinions from true bile buct cancer specialists, but you've survived that!

The second opinion from the hepato-biliary liver specialist surgeon at an NCI-affiliated cancer center saved me from unnecessary surgery, and started me on a course of chemotherapy and radiation which have improved my functionality and have me feeling good, at present.  The Naturopathic Cancer Specialist at the Life Extension Foundation has guided my choice of nutritional supplements to take and avoid during chemo and radiation, and they have a pre-and post surgical protocol for you to follow if you are so inclined.

I am so thankful for the informed loving guidance and support from the members and posters to this board, all of whom are blessings to all us cancer-fighters.  I know that you will be, too.

God bless you ALL!

-Tom

Hello Cale:

Welcome once again to the club nobody wants to join, but whose members embrace you with informed loving support.  Thank God you have a family to live with and for.  You are so blessed in that way, and it seems from your post that you already have a mature, sensitive, positive understanding of your situation and many possibilities of all kinds ahead of you.

Like you, I was diagnosed after a trip to the ER last November with jaundice, and about two and one-half months later the correct diagnosis was made of Intrahepatic Cholangiocarcinoma, the rarest of a rare kind.  A first surgical opinion from a general surgeon was for surgery--but a second opinion from a hepato-biliary specialist surgeon at an NCI-affiliated cancer center ruled that out.  My "huge tumor" had and still has too much vascular involvement, although there are no detectable metastases.  3 1/2 months of chemo shrunk it to about 1/2 to 3/5 its former size, and I'm just completing a clinical trial of Stereotactic Body Radiation Therapy which the oncologists say has a 60-70% chance of stopping further growth of the tumor, and possibly killling off much of it.  All along I've been doing nutritional supplementation guided by a Nutrapathic Cancer Specialist (Naturopathic Physician) who works for the Life Extension Foundation.  I'm feeling good and functional at present, and have a tentative plan to continue with adjuvant chemotherapy in a month or so.

I share this in hopes it gives you options you may not ever need--so I'm hoping surgery is completely successful for you!

God bless you and yours.

_Tom

25

(4 replies, posted in General Discussion)

Victoria:

Welcome to the cc club!  Just a member, here, after reviewing the website the link led me to--it is my first viewing of this alternative therapy.  We have
BigPharma, the FDA, and the conservative elements of the AMA to overcome in gaining access to any such therapy in this country--and that's not including BigInsurance, BigGovernment, and so-called health care reform.

As you continue to view the postings on this site, you will enjoy learning about the many things members are trying, and sometimes a teasing hint at the true cures being kept from us.

May I suggest the new book by Suzanne Sommers, "Knockout!", in which she interviews several cutting edge researchers in treatment alternatives- who have battled the aforementioned big powers aligned against us.

That being said, I've taken advantage of chemotherapy and radiation, as well as naturopopathic supplementation to this point.  My best Naturopathic Doctor is a telphone call away at Life Extension Foundation, of which I am yet a member--and he has guided me well on what supplements to take and avoid during chemotherapy and radiation.

God bless you and yours

-Tom