Eli

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  • in reply to: My wife’s extrahepatic CC #55073
    Eli
    Spectator

    mother… thank you so much for keeping my wife in your thoughts. I told her that a local Ottawa lady (you) was rooting for her the day of the scan. She listened with her eyes wide open and she was truly touched!!

    in reply to: Abnormal heartbeat after gem/cis #55834
    Eli
    Spectator

    Marion and Percy, thank you for your feedback. The heart side effect is gone this morning.

    So far she experienced
    – a bad headache
    – heart side effect
    – a very restless night with some anxiety attacks, which I think is also a side effect of dexamethasone.

    But no nausea. We know that cisplatin may cause delayed nausea within 48h after chemo, so we are still watching that. DW is taking 8mg Zofran twice a day.

    Just a note that our oncologist did NOT prescribe oral dexamethasone to take at home. It was given only once before chemo.

    in reply to: New around these parts #55719
    Eli
    Spectator

    Janine, we heard the same thing from our surgeon. He told my wife… you have cancer because you picked up a genetic mutation. Where and how we will never find out.

    Eli
    Spectator

    Marion,

    Re: your comment about forum space

    The images that I posted in this thread are stored on a 3rd-party server (imgur.com). When forum members view a thread with images, the images come directly from the 3rd-party server to the members’ computers. They don’t consume any space or bandwidth on CC.org.

    Long text articles posted in the forum are a different matter. They are stored on CC.org server.

    Eli
    Spectator

    Percy,

    Thank you again for sharing your biomarkers report. If it takes you too long to upload the pages, let me help. I will contact you via forum email.

    We saw our oncologist today, but I didn’t get a chance to discuss biomarkers report. He was extremely busy and hopelessly late.

    I can tell you what our surgeon told us about tumor testing. We saw him last week and I asked his opinion. He said that, before we order the report, we need to have a clear idea about
    (a) what questions we want to answer, and
    (b) how exactly the report can answer them.

    He said it’s better NOT to have information, than to have information that we don’t know what to do with. This is irrespective of how much the report costs.

    This is a very broad comment that applies to all kinds of medical tests. I think it’s a very important consideration. When I look at “Target Now”, I’m not certain what questions it can answer for us.

    Best wishes!
    Eli

    in reply to: New CCA Patients Register On This Web Site (N0v.1-Dec.18,2011) #55796
    Eli
    Spectator

    Percy, you’ve done a lot of digging. Very impressive. Thank you!

    Eli
    Spectator

    Percy,

    Thank you *very much* for sharing this page. I want to discuss biomarkers test with our oncologist. It will be very helpful to have this page in front of us.

    BTW, if you want to share more images from your report, try imgur.com. It’s easier to use than Google Documents.

    1. go to imgur.com
    2. click Computer button to add the images. Image names will appear under Start Upload button. Do not click Start Upload just yet. Add all images first.
    3. select the checkbox to group the images into an album
    4. select album layout
    5. start upload
    6. copy album URL and post it here

    ErG9y.jpg

    Again, thank you very much for sharing this info. I appreciate your help.

    Wishing you the best,
    Eli

    Eli
    Spectator

    Percy, I see one report page. Is that all you wanted to share? Or are there any other pages?

    Since the page doesn’t have any personal details, I took the liberty to put it on a free image sharing service: imgur.com

    Here’s the link:
    http://i.imgur.com/QtdsG.jpg

    While the image is hosted on imgur, it’s also possible to embed it right here:

    QtdsG.jpg

    Eli
    Spectator

    You don’t have to convert the report to PDF.

    1. Open the image in Windows Paint
    2. Wipe out all personal details such as name, address, etc. Draw solid black rectangles over them.
    3. Save the new image
    4. Put it on a free file hosting service ***
    5. Post the link to the shared file here

    *** If you have gmail account, you can use Google Documents as your file hosting service:

    1. Log into your gmail account
    2. Switch to Documents (a link at the top of the page)
    3. Upload your report file from your hard drive
    4. Share the file
    5. Post the link to the shared file here

    Eli
    Spectator

    Re sharing your report:

    What format is it? Is it an image or a PDF?

    Eli
    Spectator

    Did they actually test various chemo protocols on your live cell cultures? If not, your test is not the same as the chemo sensitivity test that I described in my previous post.

    My understanding is:

    [list=*]
    [*]”Target Now” is a biomarkers test. It measures a number of known biomarkers in the tumor. Once biomarkers are measured, they list the drugs that are expected to work best. They don’t actually test those drugs on live cells. This test does not require a fresh biopsy.[/*]
    [*]Chemosensitivity test requires live cells that can be grown in test tubes. Your oncologist tells the lab which drug combinations to test. The lab tests the requested drug combinations on live cell cultures and reports how well they work. This test requires a fresh biopsy.[/*]
    [/list]

    Eli
    Spectator

    Hi Percy,

    What do you think about Chemo Sensitivity and Resistance Assays testing? Cell Culture Drug Resistance Testing is another name for the same test.

    Did you know about this test before your second surgery?

    If yes, why did you choose biomarkers test rather than chemosensitivity test?

    A short summary of how it works:

    Quote:
    When a patient has an infection, doctors often send a sample of infected blood or tissue to a lab where they can grow the bacteria and see which antibiotics are most effective (called Bacterial Culture and Sensitivity Testing). Chemosensitivity testing is an attempt to do something similar for cancer; fresh samples of the patient’s tumor from surgery or a biopsy are grown in test tubes and tested with various drugs. Drugs that are most effective in killing the cultured cells are recommended for treatment. It is highly desirable to know what drugs are effective against your particular cancer cells before highly-toxic agents are systemically administered to your body.

    More details here:
    http://csn.cancer.org/node/145884

    The test requires a fresh biopsy sample. It’s not an option for many CCA patients, because CCA is hard to biopsy. My guess is it could be an option for two kinds of CCA patients:

    – CCA patients with intrahepatic tumor that can be biopsied
    – CCA patients who can pre-arrange the test before the surgery, and do it right after the surgery

    Eli
    Spectator

    I re-read the section of the study called “IL-6 and cholangiocarcinoma”.

    The study says that IL-6 is a very useful test to establish the initial CCA diagnosis. This is because…

    (a) IL-6 measures inflammation
    (b) CCA has a strong association with chronic inflammation

    They quoted some prior studies that confirmed this.

    On the other hand, the study does NOT say anything about the usefulness of IL-6 as a monitoring test (a test that can catch CCA recurrence as early as possible).

    Eli
    Spectator

    Percy,

    The fact that LEF offers IL-6 test on the internet (and charges $100 for it) tells me it’s not a common test that can be easily ordered from a local lab.

    Of course, that’s just a speculation I have.

    Eli
    Spectator

    Marion,

    We see the oncologist tomorrow, the day before chemo. I will twist his arm to start doing CA 19-9 on a regular basis. If twisting his arm doesn’t work, I will put him in a headlock. (kidding)

    We saw our surgeon last week. I asked him about CA 19-9. He said it’s useful for monitoring purposes IF it was high at the time of diagnosis, before surgery. In other words, the tumor showed an ability to raise CA 19-9. If CA 19-9 was in normal range before surgery, then it’s not as useful for monitoring. I had a brain cramp and forgot to ask the surgeon to look up my wife’s CA 19-9 at the time of diagnosis (the only time she did CA 19-9). I will ask the oncologist to check.

    The surgeon also said that he would be quite happy to order CA 19-9 if we can’t convince the oncologist to do it.

    Eli

Viewing 15 posts - 436 through 450 (of 497 total)