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Type: Posts; User: BrigitteM

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    With some other patients, we call them the boring...

    With some other patients, we call them the boring "mutations" because they are not "druggable". My mutations are KRAS and P53, which basically every pancreatic cancer patients have. Hyaluronic Acid...
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    In regards to MD Anderson and Dana Farber, I have...

    In regards to MD Anderson and Dana Farber, I have heard comments that confirm what David is saying. These places are top cancer research centers, but I'm not sure they really fight for their patients...
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    I apologize for creating confusion. There is what...

    I apologize for creating confusion. There is what is been said of the drugs after Phase 1, and there is what the clinical trial requires from the patient for phase 2. For the phase 2 trial, patients...
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    I don't know whether this trial is available in...

    I don't know whether this trial is available in your area, but I am on a clinical trial that may be an option for your mother. The trial chemotherapy is Abraxane (Gemcitasbine) and a drug RX-3117...
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    Personally, I find it very hard to say. Would...

    Personally, I find it very hard to say. Would your husband consider a second opinion in a major pancreatic cancer center? And then he could make his own decision better informed.
  6. I'm very sorry for your loss. You wrote a...

    I'm very sorry for your loss. You wrote a beautiful and moving portrait of your dad. He indeed sounds to have been a beautiful person. Helping those 33 miners in Chile! Wow!

    Warmly
    Brigitte
  7. Kimberly, As David said, I would want to know...

    Kimberly,
    As David said, I would want to know the size and location of the tumor, whether it has surrounded the major veins and arteries nearby and whether metastases have developed. This...
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    David, I'm very sorry for your father, you...

    David,

    I'm very sorry for your father, you and your family. I cannot imagine what it must have been to discover you needed to fight so much the medical community to get the appropriate care for...
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    My doctors always told me that the best for...

    My doctors always told me that the best for pancreas is the CT/scan with pancreas protocol and never used PET/SCAN so far.

    On the other end, they preferred MRI for the liver. In my case, the MRI...
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    I agree with Jamie. Lack of energy can be a sign...

    I agree with Jamie. Lack of energy can be a sign of depression. I don't know what kind of depression the studies are referring too, as there are different types of depression, from full fledge and...
  11. My husband has type 1 diabetes, and I worked for...

    My husband has type 1 diabetes, and I worked for years for a non-profit doing fundraising for diabetes research. Among other things, I wrote educational material for patients. I will try to give a...
  12. David, I saw your tweet about the long wait to...

    David, I saw your tweet about the long wait to get an appointment at Moffit hospital . At a time when I thought we had made a few steps forward, it is so frustrating to see that not only your Dad...
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    I fear the pain, and I think many of us do. Now I...

    I fear the pain, and I think many of us do. Now I know it is possible to remain relatively comfortable until the end. Thank you for adding this comment!
  14. Based on my own treatment plan, I would disagree...

    Based on my own treatment plan, I would disagree with my friends. Folfirinox and then Folfox worked for me three years ago. When recurrence arrived 2 years after surgery, I was recommended to do...
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    Based on the little I know, I found many good...

    Based on the little I know, I found many good points in this thread. I'll add some other points:

    - The late diagnosis is obviously what makes this cancer so deadly

    - However, even when...
  16. Great David, I'll have a look!

    Great David, I'll have a look!
  17. Thread: cpi-613

    by BrigitteM
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    Dear CobraEarl, Thank you for the update. This...

    Dear CobraEarl,
    Thank you for the update. This is great news! I was told one day by a world-known oncologist that CPI613 is a good drug.

    I'm still amazed that you and David Wingo still tolerate...
  18. I am heartbroken by your post narrating the loss...

    I am heartbroken by your post narrating the loss of your dear wife. Without warning and so fast... I don't find words, I just feel a terrible sadness. I am so sorry that both of you had to experience...
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    Dear Simone, I'm so sorry for the loss of your...

    Dear Simone, I'm so sorry for the loss of your mother. I agree with you, as we loose a loved one, the sickness with its pains and suffering is the most difficult to endure. And unfortunately, it...
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    Hi Onlyif, Unfortunately, there is not much...

    Hi Onlyif,

    Unfortunately, there is not much information on Onyvide in this forum. I hope someone with an experience of this drug will step in. But the oncologist's rationale makes sense to me; and...
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    You'll see in my signature that I received...

    You'll see in my signature that I received Folfirinox for 3 months, then cyberknife (SBRT) radiation before my Whipple surgery. The rationale given by my doctors for proceeding in this way was:
    1....
  22. An addendum: I want to clarify my position on...

    An addendum:

    I want to clarify my position on therapies outside the medical system. Just want to remind that this forum doesn't want discussion on alternative therapies, which is fine with me.
    ...
  23. Susan, Hurray! You did it!!! I'm so happy this...

    Susan,
    Hurray! You did it!!! I'm so happy this is over. Have peace of mind: you did all you can do. Now is time to get your life back and to be very kind with yourself. You deserve it! The treatment...
  24. Dear frmcarer, Thank you for the update. This is...

    Dear frmcarer,
    Thank you for the update. This is a very sad news. I wish from the bottom of my heart that your husband and you have the best quality time together in this moment. My husband and I...
  25. I had acute pancreatitis after the ERCP with FNA...

    I had acute pancreatitis after the ERCP with FNA biopsy. I was told both that it is uncommon and that it is common. So go figure! I have no reason to blame it on the inexperience of the GI doctor: I...
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