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    User: keprum

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    Lene63 wrote on BigSister's wall

    Hi, I was diagnosed with poorly differentiated neuroendocrine cancer in May/June 2012. I had 6 months with chemo and one mounth with radiation and in the moment I am without treatment since January 2013. I will start chemo again in May or in July depending on the activity in the tumors after PET/CT scan.

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      BigSister

      Okay I will get back to you tomorrow after I get the info! Almost the same situation here--primary likely small intestine, spread to liver (where it was diagnosed) and colon. After three month break, scan showed has now spread to bone (lumbar) and a lymph node on lung. The 6 month chemo reduced the liver tumors a lot, but didn't get rid of them. One thing I know about the trial is its the cisplatin and etoposide which you've already had plus another new drug in combination. So one of my big questions is if they say you can't take those drugs more than 6 cycles, how can they do this again now after only 3 months? Its all so confusing. Well, stay tuned!

      over 3 years ago
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      Lene63

      The biggest problem is that most people dont manage to take that kind of chemo more than 6 times (normally much less than 6). I am inside the hospital and get the etopocide in 3 days (a`24 hour) and cisplatine 2 days (a`24 hour). I manage the treatment and also got some very good results, so they just keep going on. If the 13 tumors really is incapsulated they will prob try the three last one also ( I gess). Every person is different, so it is difficult to say this is right and that not ;-)

      over 3 years ago
    • BigSister's Avatar
      BigSister

      Sorry, I tried to post while I was out of town and it didn't take. The trial is for a drug, Belinostat, that is used in combination with Cisplatin and Etoposide, both of which you are already getting. They say there is "some evidence" that it works to shrink the tumors and also kill the DNA so the cells don't regenerate. Its an NCI study #09-C-0173, and the Study Title is: Phase I Study of Belinostat in Combination with Cisplatin and Etoposide in Adults with a Focus on Small Cell Lung Cancer and other Cancers of Neuroendocrine Origin. Yeah, hard to know who will respond to what and what NIH is looking for but hey, have your oncologist look into it--you never know!

      over 3 years ago
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    Lene63 shared an experience

    Decision Point (Target one is to incapsulate the three last tumors): My body have prob. incapsulated 13 of 16 tumors...

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    Lene63 shared an experience

    Celebration (Remission)

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    Lene63 shared an experience

    Celebration (Hair is back)

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    Lene63 shared an experience

    Celebration (Cancer is shrinking)