Tagged: Our story ...
April 21, 2015 at 12:17 am #83932nikoleParticipant
I am here because my father was recently diagnosed with stage 4 cholangiocarcinoma. He is 61 years old and it has spread to his abdominal wall. We live near Cleveland, Ohio and are having a great deal of difficulty getting an oncologist who is experienced in this cancer. He was told by a gastroenterologist from the Cleveland Clinic to go home and get his affairs in order. They were not interested in stinting his bile duct and it was necessary for him to feel better. We found a surgeon at University who gave us hope and was able to place a stint in one of his bile ducts. His bilirubin levels dropped and he began to feel better. The surgeon recommended an oncologist. The onocologist we were recommended to was very negative. He gave all the cons to chemo and said it was the only potential option. Quite honestly, I feel he didn’t want to give it to my father stating it probably would not work. Needless to say, we are in the process of trying to find another onolcologist . We feel lost! Do any of you have recommendations for a doctor in Cleveland, Ohio area? I have a call into a doctor from Washington University St. Louis because it has been a battle finding someone experienced here. Thank you for taking the time to read my post. Take care and God bless.March 3, 2015 at 10:27 am #83931
Stevie….good luck with your visit and please mention your pain issues. There is plenty of prescription medication available.
MarionMarch 3, 2015 at 1:30 am #83930mbachiniModerator
Welcome to this site. You will find much valued information and support here. Waiting is so very hard. Please know we are here to support you in anyway we can. I will be sending good thoughts and prayers your way. Please keep us posted on your upcoming appointment.
MelindaMarch 3, 2015 at 12:33 am #83929middlesister1Moderator
Welcome to the group; we are always here to listen. I’m glad that you have seen on this board, that not all outcomes are as dire or hopeless as some statistics (or even doctors) may lead you to believe.
I hope that come 3/10, you will come away from the appointment with a plan on how to move forward. I think we all agree waiting is lousy (scan anxiety is a good example). Please let us know how you make out.
CatherineMarch 2, 2015 at 8:19 pm #83928lainyParticipant
Dear Stevie, Welcome to the best place to be for CC Support, sorry you had to join us. I am very glad you are getting another opinion at Mayo. We are big believers In 2nd and 3rd opinions. Different eyes, different suggestions. I know that when you are first diagnosed it is a huge kick to the gut and perhaps you can have your ONC order you a mild anti depression RX to help take the edge off. Attitude is extremely important as no one wants their energy wasted on stress. Here are some links you might check out and please let us know how your appt. at Mayo goes as we truly care.
Free complimentary Book or e-mail download:
Biliary drainage – stent information card
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professionals/research/patient-registry/March 2, 2015 at 7:44 pm #83927teekartMember
I was just diagnosed with cholangiocarcinoma on Feb. 2015. I started feeling ill in August of 2014, just mild pain. Was sent for heart issues, drs’ decided it was gerd or hiatal hernia. No PPI’s helped at all. Had many non productive tests. Endoscopy, colonoscopy, HIDA, ultrasound, Barium swallow. Have lost 80 pounds. that was the only thing doctors seemed to take seriously. I just cannot eat. I now have pain all the time. Used to be just in the afternoon, evening.
Then finally a cat scan which showed the growth. Then a endoscopy with small needle insertion. EUS
Am going to Mayo clinic in Jacksonville. Will be seeing an oncologist on 3/10.
Am very depressed. The only positive thing I have read are the testaments on this website about people who have had positive outcomes.
Waiting is the worst.
thanks, for listening.
Stevie B.October 26, 2014 at 6:00 pm #83926
Here is a lot of boring tech information but I wanted to capture it for anyone who might want more details or in case your onc uses the terms without explaining them or just to refresh your memory. Between chemo brain and plain old CRS this just doesn’t stick with me.
It discusses “trial phases”, “cancer grades”, and “imaging terms”. They are cut-and-paste from others.
From Cancer.gov (as a reminder of what the different “trial phases” are):
“What does a trial’s “phase” mean?
New interventions are often studied in a stepwise fashion, with each step representing a different “phase” in the clinical research process. The following phases are used for cancer treatment trials:
Phase 0. These trials represent the earliest step in testing new treatments in humans. In a phase 0 trial, a very small dose of a chemical or biologic agent is given to a small number of people (approximately 10-15) to gather preliminary information about how the agent is processed by the body (pharmacokinetics) and how the agent affects the body (pharmacodynamics). Because the agents are given in such small amounts, no information is obtained about their safety or effectiveness in treating cancer. Phase 0 trials are also called micro-dosing studies, exploratory Investigational New Drug (IND) trials, or early phase I trials. The people who take part in these trials usually have advanced disease, and no known, effective treatment options are available to them.
Phase I (also called phase 1). These trials are conducted mainly to evaluate the safety of chemical or biologic agents or other types of interventions (e.g., a new radiation therapy technique). They help determine the maximum dose that can be given safely (also known as the maximum tolerated dose) and whether an intervention causes harmful side effects. Phase I trials enroll small numbers of people (20 or more) who have advanced cancer that cannot be treated effectively with standard (usual) treatments or for which no standard treatment exists. Although evaluating the effectiveness of interventions is not a primary goal of these trials, doctors do look for evidence that the interventions might be useful as treatments.
Phase II (also called phase 2). These trials test the effectiveness of interventions in people who have a specific type of cancer or related cancers. They also continue to look at the safety of interventions. Phase II trials usually enroll fewer than 100 people but may include as many as 300. The people who participate in phase II trials may or may not have been treated previously with standard therapy for their type of cancer. If a person has been treated previously, their eligibility to participate in a specific trial may depend on the type and amount of prior treatment they received. Although phase II trials can give some indication of whether or not an intervention works, they are almost never designed to show whether an intervention is better than standard therapy.
Phase III (also called phase 3). These trials compare the effectiveness of a new intervention, or new use of an existing intervention, with the current standard of care (usual treatment) for a particular type of cancer. Phase III trials also examine how the side effects of the new intervention compare with those of the usual treatment. If the new intervention is more effective than the usual treatment and/or is easier to tolerate, it may become the new standard of care.
Phase III trials usually involve large groups of people (100 to several thousand), who are randomly assigned to one of two treatment groups, or “trial arms”: 1) a control group, in which everyone in the group receives usual treatment for their type of cancer, or 2) an investigational or experimental group, in which everyone in the group receives the new intervention or new use of an existing intervention. The trial participants are assigned to their individual groups by characteristics. This balance is necessary so the researchers can have confidence that any differences they observe in how the two groups respond to the treatments they receive are due to the treatments and not to other differences between the groups.
Randomization is usually done by a computer program to ensure that human choices do not influence the assignment to groups. The trial participants cannot request to be in a particular group, and the researchers cannot influence how people are assigned to the groups. Usually, neither the participants nor their doctors know what treatment the participants are receiving.
People who participate in phase III trials may or may not have been treated previously. If they have been treated previously, their eligibility to participate in a specific trial may depend on the type and the amount of prior treatment they received. In most cases, an intervention will move into phase III testing only after it has shown promise in phase I and phase II trials.
Phase IV (also called phase 4). These trials further evaluate the effectiveness and long-term safety of drugs or other interventions. They usually take place after a drug or intervention has been approved by the FDA for standard use. Several hundred to several thousand people may take part in a phase IV trial. These trials are also known as post-marketing surveillance trials. They are generally sponsored by drug companies.
Sometimes clinical trial phases may be combined (e.g., phase I/II or phase II/III trials) to minimize the risks to participants and/or to allow faster development of a new intervention.
Although treatment trials are always assigned a phase, other clinical trials (e.g., screening, prevention, diagnostic, and quality-of-life trials) may not be labeled this way.”
Tumor Grade (from National Cancer Institute):
1. What is tumor grade?
Tumor grade is the description of a tumor based on how abnormal the tumor cells and the tumor tissue look under a microscope. It is an indicator of how quickly a tumor is likely to grow and spread. If the cells of the tumor and the organization of the tumor’s tissue are close to those of normal cells and tissue, the tumor is called “well-differentiated.” These tumors tend to grow and spread at a slower rate than tumors that are “undifferentiated” or “poorly differentiated,” which have abnormal-looking cells and may lack normal tissue structures. Based on these and other differences in microscopic appearance, doctors assign a numerical “grade” to most cancers. The factors used to determine tumor grade can vary between different types of cancer.
Tumor grade is not the same as the stage of a cancer. Cancer stage refers to the size and/or extent (reach) of the original (primary) tumor and whether or not cancer cells have spread in the body. Cancer stage is based on factors such as the location of the primary tumor, tumor size, regional lymph node involvement (the spread of cancer to nearby lymph nodes), and the number of tumors present. More information about staging is in the NCI fact sheet Cancer Staging.
2. How is tumor grade determined?
If a tumor is suspected to be malignant, a doctor removes all or part of it during a procedure called a biopsy. A pathologist (a doctor who identifies diseases by studying cells and tissues under a microscope) then examines the biopsied tissue to determine whether the tumor is benign or malignant. The pathologist also determines the tumor’s grade and identifies other characteristics of the tumor. The NCI fact sheet Pathology Reports describes the type of information that can be found in a pathologist’s report about the visual and microscopic examination of tissue removed during a biopsy or other surgery.
3. How are tumor grades classified?
Grading systems differ depending on the type of cancer. In general, tumors are graded as 1, 2, 3, or 4, depending on the amount of abnormality. In Grade 1 tumors, the tumor cells and the organization of the tumor tissue appear close to normal. These tumors tend to grow and spread slowly. In contrast, the cells and tissue of Grade 3 and Grade 4 tumors do not look like normal cells and tissue. Grade 3 and Grade 4 tumors tend to grow rapidly and spread faster than tumors with a lower grade.
If a grading system for a tumor type is not specified, the following system is generally used (1):
GX: Grade cannot be assessed (undetermined grade)
G1: Well differentiated (low grade)
G2: Moderately differentiated (intermediate grade)
G3: Poorly differentiated (high grade)
G4: Undifferentiated (high grade)
4. What are some of the cancer type-specific grading systems?
Breast and prostate cancers are the most common types of cancer that have their own grading systems.
5. How does tumor grade affect a patient’s treatment options?
Doctors use tumor grade and other factors, such as cancer stage and a patient’s age and general health, to develop a treatment plan and to determine a patient’s prognosis (the likely outcome or course of a disease; the chance of recovery or recurrence). Generally, a lower grade indicates a better prognosis. A higher-grade cancer may grow and spread more quickly and may require immediate or more aggressive treatment.
The importance of tumor grade in planning treatment and determining a patient’s prognosis is greater for certain types of cancer, such as soft tissue sarcoma, primary brain tumors, and breast and prostate cancer. Patients should talk with their doctor for more information about tumor grade and how it relates to their treatment and prognosis.
Simplified explanation of imaging terms (from Marion):
C-T (CAT) Scans – computed or computerized tomography. Can show precise location of tumor, defined shape, solid or hollow; provides clues to a cancerous tumor but not as concrete as biopsy. Not reliable in identifying tumors less than 2 cm in size.
MRI (Magnetic Resonance Imaging) Scans – In many tissues, the image and detail are clearer than those with an MRI than a CT scan. For some tissues, MRI image is less clear than CT. Difficult to distinguish between Inflammation and scar tissue.
PET (Positron Emission Tomography) Scans – picks up cancer activity at a very small level.
Image not as clear as CT and MRI, inflammation can obscure other activities on scan and localizing exact location of tumor. Best suited for higher grade tumors, metastasis. Some insurance carriers won’t cover cost of PET Scan.
CAT/PET Combo Scans – wave of the future, allows for anatomical detail of the CT and detection of small nodules of cancer cells by PET. Not yet widely available in many hospitals.
Insurance coverage: don’t know.
DukeOctober 26, 2014 at 3:23 am #83925
Please add your own information. The idea was to come up with a place where people could provide information that would be useful to others, especially those new to these Boards.
There are a lot of facts, but also a lot of emotion. That’s part of this disease. We lost three old friends about a month ago. I think that has taken a major toll on members. But we move on. We have to, for our sakes and to honor their memories.
DukeOctober 25, 2014 at 3:26 am #83924lornadooneParticipant
Wow Duke! This is amazing. Thank you so much for taking the time to post so much valuable information. I don’t know how I missed it but it is a must read for everyone on this site.July 31, 2014 at 11:22 pm #83923darlaParticipant
Thanks to all of you. Duke for the posting and Marion and Rick for making it a “Sticky”.July 31, 2014 at 8:22 pm #83922
Duke….I appreciate your effort and honesty in the posting. Patients like you are the voice of this disease and the discussion board is to encourage all to share thoughts, ideas and experiences amongst the CCA community. We are in this together and together we need to make a better world for all touched by this cancer.
MarionJuly 31, 2014 at 7:53 pm #83921
It started out for me as a way to put things together, then expanded. Sat on it for a while to let some of the seeds germinate. Expanded again, then decided to post. I could spend more time (one thing I have lots of) but I wanted to hear what you have to say. If I misstated something, that’s easy to fix and needs to be fixed. If you have a different opinion, go for it. That’s what makes this site so strong. I just checked – 3157 registered users; 24 in July alone. That means people are not just passively monitoring, they see value in participating. That’s what I hope this post will do – convince people to participate by giving them an idea in one place what we are all about. Then we can go about what we do best – listen and help our new family members.
Thanks for your support.
DukeJuly 31, 2014 at 7:08 pm #83920
Voila…Rick has added a “sticky” to this thread. Thanks much, Rick.July 31, 2014 at 5:20 pm #83919gavinModerator
Thanks loads for this Duke, I know that it will be of great help to all of the newcomers to the site. And being that we get many who lurk and don’t post, it will be of great help to them as well!
I’ll have another read of this and if I can come up with any thoughts or stuff to add I’ll post them here on the thread. Hopefully we will get lots of input on this and that the thread will get stuck to the top of the introduction section too.
Thanks again Duke!!
GavinJuly 31, 2014 at 5:15 pm #83918
Duke….no one can do it like you have done. (you know the background to my comment)
This is a very important thread for others to follow.
Thanks a million.
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