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  1. I’ve asked that particular question as there are...

    I’ve asked that particular question as there are years of experience here that I often go back to. It’s my little way of making sure that the experiences of our past members are made relevant again....
  2. The Cancer Forums is shutting down (31 Dec 2019)

    Pancreatic Cancer forum members,

    I'm re-posting an announcement from the owners of The Cancer Forums below. It's been my pleasure to get to know you all over the last several years. I know I'll...
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    Your elevated CA19-9 would be expected if there...

    Your elevated CA19-9 would be expected if there were liver, gallbladder, or bile duct damage that has nothing to do with pancreatic cancer. CA19-9 is not used to diagnose pancreatic cancer by itself...
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    I have a feeling that the PARPVAX trial is on the...

    I have a feeling that the PARPVAX trial is on the heels of the POLO trial of a PARPi maintenance in gBRCA patients is looking to see if prior platinum effectiveness plus (or minus) gBRCA is necessary...
  5. That’s pretty good. We in the USA appear to...

    That’s pretty good. We in the USA appear to subsidize the pharmaceutical companies and the research budgets with our higher costs.
  6. Susan, I think that PARPi's are only being...

    Susan,

    I think that PARPi's are only being looked at in patients with known DNA repair mutations such as ATM, PALB2, BRCA2, et al. Mary Fox's ATM mutation makes the PARPi a good fit for her.

    ...
  7. Possible Creon Substitute - Vital Nutrients Pancreatic Enzymes

    A recent post in a Facebook group alerted me to a possible Creon substitute that may just work. I look for many criteria and this one appears to meet the most important ones. I have no personal stake...
  8. Pancanology Explains Why Chemotherapy Stops Working

    In a topic that is relevant to all cancer patients, Iíve drawn an animated model of tumor growth and treatment to show how and why chemotherapy ultimately stops working for most patients. When you...
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    Some people are reluctant for 2nd opinions...

    Some people are reluctant for 2nd opinions because of the effort and expectation that they'll be expected to travel all the time. Many of us will get another opinion at a major center and just take...
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    John, Our doses in the USA are based on the...

    John,

    Our doses in the USA are based on the lipase units in USP, not by weight. There are many manufacturers of pancrelipase (the generic name) worldwide, such as pancreaze, pertzye, ultrase,...
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    Here is a Creon dosing calculator provided by the...

    Here is a Creon dosing calculator provided by the manufacturer. It calculates some rather large doses and ranges but their minimum is likely larger than what she’s currently taking (depends on...
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    These enzymes are compatible with every treatment...

    These enzymes are compatible with every treatment I know of.
    Yes, chemo contributes to weight loss through nausea and loss of appetite.
    Yes, when taken properly these enzymes will help break down...
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    Pancreatic Enzyme Insufficiency (Video)

    This is an excellent video on pancreatic enzyme supplements often needed by pancreatic cancer patients due to disease or resection.

    https://youtu.be/DpZXhVUgvnI
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    So I hesitate to mention this, but cold therapy...

    So I hesitate to mention this, but cold therapy during chemo treatment has worked for some others, but it seems to be quite painful to endure during treatment.

    The idea is that cells that are cold...
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    My foot neuropath appeared before starting chemo...

    My foot neuropath appeared before starting chemo and was mostly a result of extreme weight loss exposing the nerves to bones, instead of being padded by muscle or fat. It only got better when the...
  16. Thread: Wish me luck!

    by ddessert
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    Great to hear! Did you have the open NanoKnife...

    Great to hear!
    Did you have the open NanoKnife procedure? And how did they choose which mets to treat or was it all of them? Is there some limit to the number of mets they would treat?
    I just read...
  17. Thread: Wish me luck!

    by ddessert
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    Best of luck! If you have not found it yet, check...

    Best of luck! If you have not found it yet, check out the Facebook group: Nanoknife Surgery Warriors
  18. You do know that the median age of onset for...

    You do know that the median age of onset for pancreas cancer is 70? And that pancreas cancer takes 18-20 years to develop? And that 0.00001% of all pancreatic cancers are in 20-year olds? And that...
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    If the FOLFIRINOX was still working when he...

    If the FOLFIRINOX was still working when he stopped, 2/3 FOLFIRINOX may still be an option.

    PARPi have only been effective in patients in tumors with HR mutations) like BRCA1, BRCA2, PALB, etc).
    ...
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    My recommendation is no more exploratory stuff...

    My recommendation is no more exploratory stuff unless it is necessary for treatment. I get the "feeling" from researchers and doctors that putting more stress on the body weakens the immune system...
  21. If you look for survivor stories in places like...

    If you look for survivor stories in places like Let's Win PC or PanCan.org, you can find quite a few successes that you might gain hope and learn from.
  22. Thread: My new plan

    by ddessert
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    It sounds like you want to fight until the end!...

    It sounds like you want to fight until the end! There is a NanoKnife Surgery Warriors Facebook group to check out (say Hi if you’re there). I just posted a question about IRE/PET scans there based on...
  23. I think the Lewis Antigen test must be pretty...

    I think the Lewis Antigen test must be pretty specialized and I don’t know how to have it tested. I do understand that some people who don’t make CA19-9 are monitored through CEA or CA-125 but those...
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    Has he done genetic testing? This is giving many...

    Has he done genetic testing? This is giving many patients an idea of what treatments might be effective for them.

    If his scans show growth with FOLFOX, I’m wondering why he’s not moved on to...
  25. This question is often asked and you can check...

    This question is often asked and you can check out my Causes of CA19-9 video.
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