DStone's Recent CancerCompass Activity

  • DStone has replied to a post on the message board

    Unfortunately I am not a candidate for surgery because I have mets in the liver, pancreas and bone where I have tumors in my skull, spine, pelvis and hip. I am currently receiving PRRT. My second treatment is on Tuesday. I do think if someone is a candidate for surgery that would most likely be the best option before treatments. Take care of yourselves and those you love <3

    June 08 at 2:23 PM view post
    • DStone has replied to a post on the message board

      Hello, I hope you are well. I’m wondering how this treatment was for you? I had one of four on April 16th and I’ve just started feeling better with no pain just two days ago. Can you tell me what your experience was like and outcome for stabilizing your disease? I am 37 yo. with metastatic Poorly differentiated NET with the primary doctors believe being the primary site. TY, Danielle

      April 26 at 6:52 AM view post
      • DStone has replied to a post on the message board

        Hello, First of all, I’m saddened by the news of the brave souls who have passed away and I offer my condolences to their family and friends. I am 37 yo and I have metastatic poorly differentiated PNET. I was diagnosed at 31 yo. just after my engagement to my now husband. I would be happy to help others by answering any questions you may have regarding my current and previous treatment regimen(s). This is an awfu...

        April 26 at 6:33 AM view post
        • DStone has replied to a post on the message board

          Hi Heather, I was diagnosed with PNET in November of 2013 at the age of 32. I am currently receiving treatment/changing up treatment and would love to talk with you any time. I look forward to sharing stories with you. Warmest regards, Danielle

          August 19, 2016 view post
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          About DStone

          Pancreatic Cancer
          Cancer Nutrition, Cancer Treatments, Chemotherapy, Clinical Trials and Research, Diet, Emotional Support, Genetics, Hormone Therapy, Lifestyle, Massage Therapy, Recipes, Side Effects, Supplements, Surgery

          I was diagnosed with PNET (Pancreatic Neuroendocrine Tumors) at the age of 32 in November 2013. The origin of the disease is the pancreas, I was believed to have a 12mm lesion in my pancreas that spread to my liver (bulk of the disease) and bone (one tumor in my left hip bone, one in the bone of my skull). I have been receiving monthly injections of Octreotide 200mg ever since and I have been on Afinitor/Everolimus for almost 3 years. I have recently been hospitalized for inflammation of the liver capsule and had embolization of the right liver lobe, which has provided positive results (shrinkage of tumors), but I have had growth of tumors in my left liver lobe. I've also been hospitalized twice recently for pancreatitis. They can't seem to figure out whether the tumor in my pancreas is causing the duct to close up or if the tumor is gone and has left behind scar tissue. I am awaiting an Octreotide scan for next week and will be provided new chemotherapy now that I've been off of the Afinitor. I will be two weeks on/two weeks of a combo of Temazolamide/Capezidabin. I am being treated by a NET Specialist at Dana-Farber Boston, MA. If anyone has any questions or just wants to talk I'm here for you.

          The question I have is, is there anyone out there that was diagnosed and still proceeded to have children? I've been advised against it, but my husband and I want so badly to have a family.

          Thank you!

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