High Grade PNET

Hi all,

My Dad was diagnosed this past February. His PNET is in the tail of his pancreas with innumerable mets to the liver. His first oncologist said he was grade 2 with some signs of grade 3. He immediately started on Cap/Tem. Just before he started the second round (3 days ago) he got a second opinion at a University of Iowa specialist. They got all of his tests/reports but did not run any new ones yet. Just from the new pathologists reading his reports they determined he was high grade 3 and also had a cancerous spot on his right rib bone and lymph nodes. It was quite a shock hearing the different reading with not so great news. They agreed with the current treatment plan of 2 rounds of cap/tem then rescan to how it's responding. They have the backup plan of more aggressive chemo ready to go. Other than some pain in his right rib and fatigue my Dad has had no symptoms. No side effects at all from cap/tem. Anyone's experiences with high grade PNET would be greatly appreciated!!




  • northa914
    northa914 Member Posts: 100
    Cap/Tem Therapy

    Hi Jacquelyn,

    I'm so sorry to hear about your dad's diagnosis. I've been fighting PNET since January 2013 (I was initially misdiagnosed in June 2010 and spent 2 1/2 years chasing the wrong beast).  I have well differentiated/moderately growing stage IV PNET which originated in the pancreatic tail and head and spread to the liver, lymphnodes and bones (bone islands).  Immediately after my rediagnosis, I had an octreoscan to make sure that all of the cancer in my body was neuroendocrine tumor and that I didn't actually have two rare cancers. Once the diagnosis was confirmed, I began seeing a neuroendocrine specialist and started treatment with Afinitor and Sandostatin LAR injections. After five months with no success, I was switched to the cap/tem plus Sandostatin LAR protocol on a two week on/two week off cycle for the cap/tem and a once monthly shot of Sando.  After two rounds, my tumor markers went to their lowest points ever.  My Chromagranin A went from a high of 180 to less than 3, and my CA 19-9 went from a high of 4800 to 96.  I've been on this protocol for almost one year and continue to do well.  I do have the hand-foot syndrome from the capcetibine, but it's manageable. I'm given injections of vitamin B-12 for the neuropathy caused by my previous treatments with the chemotherapies used prior to my PNET treatments, and Xgeva injections to heal and treat the bone islands.  I credit my survival to my liver specialist at Norris-USC in Los Angeles and my NET specialist at Cedars Sinai.  My oncologist at Norris ordered four chemoembolizations which decreased the tumor load in my liver from over 50% to less than 20%, and my speclist at Cedars put me on the right treatment path.  Hopefully your father is being treated by an NET specialist because it is a rare and tricky cancer.  A good site to look at is carcinoid,org. It has some good info about treatments, trends, and has a list of specialist ranked by state.  There is a treatment available (PRRT) in Europe and as a patient-sponsored trial in Texas (it may now be available in other states as well now, I haven't looked into this option in more than a year.  I believe so far that the best response as far as chemotherapies go is seen with the cap/tem protocol.


    I also had and have no symptoms from my PNET.  Most of my physical issues are caused by the previous therapies administered (the worst bein FOLFIRINOX) whcih are fatigue, neuropathy, and the never-ending chemobrain.  I hope your father does as well as I did with the cap/tem regime.  Please let me know if there's any other questions you may have.  I tried to give you a brief summary of a long story, and hopefully my chemobrain didn't confuse you more.