• Longsurf

    Asked by Hellbent on Monday, September 11, 2017

    Longsurf

    For my husband with Stage IV metastatic colon cancer, can you please tell me what experiences have you had with Longsurf?

    5 Answers from the Community

    5 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      Hi Hellbent,

      I am sorry that no one has responded. I didn't, and suspect others didn't for the same reason, because i didn't know anything to tell you.

      I did a little research, though. This may be information you have, but thought i would pass it along:

      "The most common side effects of treatment with Lonsurf are anemia, a decrease in infection-fighting white blood cells (neutropenia) or blood platelets (thrombocytopenia), physical weakness, extreme tiredness and lack of energy (fatigue), nausea, decreased appetite, diarrhea, vomiting, abdominal pain and fever.

      The FDA recommends that health care providers obtain complete blood counts prior to starting each treatment cycle of Lonsurf and monitor patients throughout treatment, as Lonsurf may cause a severe decrease in blood cell and platelet production (myelosuppression)."

      This information was found at
      https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm463650.htm

      I am sorry i have no personal knowledge to share with you. Hoping your husband does well with this new treatment.

      almost 3 years ago
    • GregP_WN's Avatar
      GregP_WN

      Here is the website for Lonsurf https://www.lonsurf.com/

      almost 3 years ago
    • GregP_WN's Avatar
      GregP_WN

      Also searching our experiences tab for Lonsurf, I find three people that have reported experiences, here is the search https://www.whatnext.com/search/experiences?utf8=%E2%9C%93&search%5Bquery%5D=Lonsurf&commit=Search

      almost 3 years ago
    • Hellbent's Avatar
      Hellbent

      Thank you both - Living with Cancer and GregP_WN for your thoughtful research, relentless follow up and feedback. I understand Lonsurf was approved by the FDA in 2016 and it's unforgiving side effects, particularly for one with already low blood counts, is not good news. Our immediate goal & efforts are to find a viable clinical trial match for my husband, but that too can be problematic. In any case, I'm hellbent and we're not giving up. Much appreciated.

      almost 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Hellbent, i was in a clinical trial for nivolumab (Opdivo) for 4 years. It was, quite literally, a life saver for me. I hope you find a viable trial.for your husband. Hellb ent is a good way to be when dealing with cancer...

      almost 3 years ago

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