Tagged: Our story ...
June 1, 2015 at 3:29 pm #83940
Welcome, David, to the best place to be for CC support but sorry you had to find us. Yes, we do have members from Australia along with a great Nurse, Janet. I hope she is still checking on us and sees your post. I am sending out an S.O.S. for any members in Australia to respond to your post.
Never apologize to us for anything you do on this site! We do not grade papers.
I cannot believe you have gone 28 months with no treatment. You might try our search engine at the top and type in Australia and a ton of posts will appear from members there.
Good for you by standing your ground at the hospital demanding to be seen. Wow.
Please share with us what treatments you have had and how you are doing now. You are not alone as we all care.June 1, 2015 at 3:08 pm #83939delpak-daveParticipant
Hello there, my name is David, I am not sure if I have posted in the right area of this site so if not can someone please let me know, I have been watching this site for a short time and I am learning more about my Cancer in those few days than any of my treating Doctors have told me, some of the treatments and terms I have seen on this site have never been mentioned to me and to be honest this has frightened me, not through any fault of this site but rather the thought that I may have wasted a load of time traveling the path that I have to date.
I am 51 years old, I was diagnosed on 14th March 2014 with Intrahepatic Cholangiocarcinoma (I am sorry if I have spelled this incorrectly), my diagnosis only came after my seeing a number of different Doctors over at least a period of 28 months of being told there was nothing wrong with me and I just knew that something just was not right and so one night I phoned emergency services and was taken by Ambulance to the local Hospital and basically refused to leave for 3 days.
While in Hospital I was able to watch a bit of TV and what I can only believe to be a sign, I watch 4 different Medical shows over those three days and from the symptoms that patients were describing on the TV shows I had them all but no pain other than one time that I could recall over that 28 months of seeing Doctors and when I told the Doctors of what I had watched I was told that they felt that I was suffering from Depression (and now I wish they had been correct) they then agreed to at least do a CT scan and then my journey began.
I will stop for the moment, because I have not had anyone to talk to about this and now I have found your site I fear that I may type out a novel and I do not want to sound like I am crying victim but I really could use as much information as possible as it is becoming very evident that not a lot of experience with this Cancer is available in my location yet I have no intention of just laying down and plan to fight this as much as possible.
I would love to know (if allowed) to know if there are any other members here in Australia? but not limited to that and would share with anyone anywhere.
I am sorry for the drawn out post, I do appreciate the time anyone may take reading my post.
My Kindest Regards:
DAVID LApril 22, 2015 at 5:52 pm #83938gavinModerator
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your dad. But glad that you’ve joined in with us now as you are so in the best place for support and help and will get loads of both from us all. Real glad to hear that you are looking to get further opinions for your dad as to treatment options and I so hope that you have much success with this.
Please let us know how things go with this and know that we are here for you.
My best wishes to your dad,
GavinApril 22, 2015 at 3:23 am #83937
Dear Nikole, welcome to the best place to be for CC support and on becoming past of a remarkable family. I am so sorry to hear about your Father but glad to read you are getting right on that 2nd opinion. We are huge believers in 2nd 3rd and even 4th opinions. Because CC is so rare, the best thing you can do is get that other opinion. Go with your gut on these things as it will not fail you. You were not comfortable with your present ONC so it is time to see another. I am posting some sites we send to new members that may be of help to you. Please keep us in the loop on your Father’s progress, you are NOT alone you have lots of family here.
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/April 22, 2015 at 3:08 am #83936
When I went to bed last night, I was questioning whether or not to look into that 2nd, 3rd, and 4th opinion. Thank you…because when I saw your post I got on the phone and scheduled with another onocologist. I am hoping we find that one that makes us comfortable with what he/she has to say.
I appreciate you taking the time to reply to my post. I find so much comfort in knowing others like you are there to listen and give advice.
NikoleApril 22, 2015 at 3:02 am #83935
Thank you for responding to my post. After reading your posts I was hoping that you would respond to the mine. I find strength and hope in reading these from everyone. I knew you were from Ohio and were battling like my father. It is helpful to hear from others who have dealt with the same issues as my father and I. Especially trying to find someone with a greater knowledge of cholangiocarcinoma. I will look into Dr. Sohal at the Cleveland Clinic. We were able to get an appt with Dr. Meropol from University next week and hope he is more optimistic than our previous onocologist. I will keep you updated with any new information we get. You and your family are in my thoughts and prayers.
NikoleApril 21, 2015 at 6:40 pm #83934dukenukemMember
I am being treated by Dr. Davendra Sohal (he is treating 15-20 patients with CC and similar liver cancers) at the Cleveland Clinic. I also met once with Dr. Bassam Estfan from the Clinic. Both are very dry, almost removed emotionally, but I have good feelings about them. They strike me as very knowledgeable. My previous onc was at the Seidman Cancer Center in Mentor, OH. She specializes in women’s breast cancer. That Center has seen only 4 CC patients in the last 3 years. She has run out of treatment options and nothing else to offer. Dr. Sohal had a possible trial (my platelets were too low to get into it) but also two more chemo options, one of which I am using now.
I never got the info I requested about University Hospitals and their CC experience.
I would not rule out Mayo in Mn or MDA in Tx (Dr. Javle) as places for second opinions.
DukeApril 21, 2015 at 3:59 am #83933sandynycMember
I am so happy you found this site. You will get a lot of great advice and direction, and I know there are a lot of resources in your area. I am sure someone will weigh in soon with recommendations and referrals.
The one thing I learned early on – and I know everyone will tell you- is to get a 2nd, 3rd, even 4th opinion until you feel comfortable with what you are hearing.
You will learn a lot, more than you ever imagined, about this horrible disease, but with knowledge will come understanding and power to make informed decisions.
Good luck and know we are all with you.
SandyApril 21, 2015 at 12:17 am #83932
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 #83931marionsModerator
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 #83928
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 #83926dukenukemMember
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.
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