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Type: Posts; User: BrigitteM

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  1. Replies
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    Dear Legodude Folfirinox is a very aggressive...

    Dear Legodude
    Folfirinox is a very aggressive regimen but also one that has shown the best results; although some pancreatic tumors don't respond to it. Make sure your oncologist knows about every...
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    I hate steroids too! Many patients are told to...

    I hate steroids too! Many patients are told to take it in the morning, but, with my oncologist's blessing, my preference is to take it mid-afternoon. By doing this, I have less trouble with sleeping....
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    I am on a chemotherapy with Abraxane and a trial...

    I am on a chemotherapy with Abraxane and a trial drug very similar to Gemzar. I've been on this regimen for 11 months and I'll start the 12th cycle next week.

    I had problem with fevers as well....
  4. Susan, So sorry to hear that they found new node...

    Susan,
    So sorry to hear that they found new node involvement. After being cancer free for a while, I found it very hard to have to go back to treatment, but I'm adjusting and still enjoy a good...
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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.
  10. 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
  11. 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...
  15. 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...
  16. 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!
  18. 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...
  20. Great David, I'll have a look!

    Great David, I'll have a look!
  21. 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...
  22. 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....
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