dukenukem

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  • in reply to: My dear mother #85407
    dukenukem
    Member

    Kris –

    I think Lainy speaks for all of us. Know that you did everything you could to help your mother so have no regrets or or guilt or second guesses. Make sure your Dad knows this too. He will need extra TLC.

    Duke

    in reply to: 4 year scan not too good. Please help #85389
    dukenukem
    Member

    I think the majority of people here have not had resections so we don’t really have anything to say. But in the big picture, your question of when to get chemo, I’d start as soon as possible while you are healthiest. Reactions differ, but no one shines after chemo, it’s just that some are not as bad as others. There is always the option of cutting back.

    Would orange juice and/or grapefruit juice help with your alkalization?

    Duke

    dukenukem
    Member

    Bummer news for those of us with distant mets.

    Duke

    in reply to: Back on track #85367
    dukenukem
    Member

    If I get the pills, will I have to take them at the trial clinic or can I take them at home or my local clinic?

    Since the FoundationOne report singled out the trametinib rather than the other two, if they don’t prescribe that I’m walking out.

    The other two trials are expected to complete in April-June 2015, so I’m not sure of the benefit of such a short trial.

    Duke

    in reply to: NEWLY DIAGNOSED MENTALLY/PHYSICALLY CHALLENGED BROTHER #85370
    dukenukem
    Member

    Echoing what Lainy said: you and your sister have to maintain positive attitudes for your sakes and for your brother. I’m going to make a huge leap here and guess that he has learned over the years to pick up non-verbal clues from you. This diagnosis scared the heck out of me, a second guess is that it is doing the same for him. You two are one of his main pipelines to he world. Do not underestimate the affect on him, nor underestimate his strength. He’s addressed his challenges so far and may well find a way to address this one. You walk a fine line between honesty and love. Don’t hesitate to come here to ask questions or simply to express yourself. We are walking the same path as you, your sister, and your brother. It may be hard for you to open up to strangers – proceed at your own pace and comfort level. We won’t force ourselves on you but we will help any way you want us to.

    Duke

    dukenukem
    Member

    I added a little excerpt:

    “No correlation was found between serum tumor markers and total bilirubin, aspartate aminotransferase (AST) and alkaline phosphatase (ALP). The sensitivity, specificity and accuracy were: CEA: 52%, 55%, and 58%; CA 19-9: 74%, 82% and 78%; CYFRA 21-1: 76%, 79% and 78%; MMP7: 78%, 77% and 80%, respectively. The combination of all serum markers afforded 92.0% sensitivity and 96% specificity in detecting cholangiocarcinoma, showing the highest diagnostic accuracy (94%).”

    Duke

    dukenukem
    Member

    I was diagnosed with a 19 cm tumor in my liver with mets to the lungs and lymph nodes. 19 cm was way too big but it got down to about 10 cm with chemo. I never got an answer as to why I could not have a resection on the liver tumor, then go after the lungs and lymph nodes specifically, one thing at a time. Right now the chemo is aimed at the liver and whatever else happens is “extra”. This is probably consistent with the concept of “palliative care” rather than a cure.

    Hopefully there are good reasons why this concept is not an accepted practice.

    Duke

    dukenukem
    Member

    CONCLUSIONS:

    Liver resection can be performed safely for patients with large or multifocal ICC. The long-term outcome for these patients can be stratified on the basis of a prognostic score that includes tumor number, nodal metastasis, and poor differentiation.

    Doesn’t the first sentence seem to contradict what most doctors say? The results still aren’t great but it is another option.

    Duke

    in reply to: very good news!!!! #85305
    dukenukem
    Member

    Wonderful news!

    in reply to: Just an Update #85313
    dukenukem
    Member

    Great news! That must have made your family feel better, too.

    What is the next drug she has in mind for you?

    I originally felt that trials were the end of the line, but after reading more (especially about Melinda), I no longer believe that.

    Here’s a link to Johns Hopkins that talks about sugar and other cancer hoaxes.

    http://www.hopkinsmedicine.org/kimmel_cancer_center/news_events/featured/cancer_update_email_it_is_a_hoax.html

    Post when you can. Use the Member’s Cafe just to say “Hi”.

    Duke

    in reply to: Introduction / Welcome #83926
    dukenukem
    Member

    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.

    Duke

    in reply to: Introduction / Welcome #83925
    dukenukem
    Member

    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.

    Duke

    in reply to: My dear daddy #85226
    dukenukem
    Member

    Been there, done that, heard the same diagnosis. I’m still here 15 months later and still going strong. This is way too early to give up. Gavin and others are familiar with the UK health system so they can give you specifics on what you should be looking for in terms of a second opinion, but your oncologist seems to be just a bit negative. There may be reasons to support the 6-12 month but the one thing that will maximize your Dad’s life is a positive attitude, which is what you and he need to be concentrating on.

    You believe in the power of prayer. Great. Now multiply that by all those who will read your post and will add their prayers to yours. You and your Dad are not alone in this fight. We can’t be there to physically hug you and dry your tears, but we are there in spirit.

    You Dad has been getting chemo for only about three months. Some people respond quickly, others may take longer to see results. There is no reason to panic if the CT scan does not show a decrease in tumor size or numbers. The best help you can be is to show your Dad a positive attitude and give him lots of smiles and hugs. You’ve got a week before meeting with the onc. It will be the longest week of your life but the two of you will get through it. As a patient I know that I worry more about my wife than I do about me. Your Dad probably feels the same about you. Talk about your hopes and fears and face the future together.

    Duke

    in reply to: 5 Years Cancer Free this Month #85189
    dukenukem
    Member

    You can repeat the “CTRL +” to get even larger.

    “CTRL -” will make it smaller if you go to far.

    in reply to: Question?? #85155
    dukenukem
    Member

    Not being a doctor but being a tech junkie I think you should ask a few more questions. Doing the same technology (CT scan) using different machines may give you different answers. Using a whole different technology (ultrasound instead of CT) makes me wonder if the results are directly comparable.

    Duke

Viewing 15 posts - 211 through 225 (of 358 total)