• semperfi524's Avatar

    semperfi524 wrote on caensminger's wall

    one other question comes to mind? what have you done as far as diet adjustments?

  • semperfi524's Avatar

    semperfi524 wrote on caensminger's wall

    Just read your journey...I am so sorry for the complications and difficulties you've faced. I hope you are feeling better now. What is the "old school chemo drug" you mentioned? Is it Mekinist? If I am BRAF+ my dr wants to put me on Tafinlar + Mekinist. I am uneasy about it, simply because it seems to have the most serious side effects. Do you have advice on this med?

    4 Comments
    • caensminger's Avatar
      caensminger

      I have not had Tafinlar.
      I did Yervoy, then opdivo, then a short stint with Mekinist. Now it's the Temozolomide.
      Can't believe you're a local! Cool!
      I was raised in Orcutt, graduated Righetti. All my best friends are still in Santa Maria. It's a great town for me.

      2 months ago
    • semperfi524's Avatar
      semperfi524

      SMHS 84. My niece and nephew went to RHS, graduating in 99 I believe. Wonderful place to grow up...miss lots of things now. I grew up near Minami Center off Enos Rd, then moved to Cambria Ave in Orcutt, and finally to Via Esmeralda.

      2 months ago
    • caensminger's Avatar
      caensminger

      Haha! My first boyfriend, MG Cantero, lived on Via Esmeralda. He graduated St. Joe's, maybe '91.
      I was '93. Righetti.

      2 months ago
  • semperfi524's Avatar

    semperfi524 wrote on caensminger's wall

    Hi just noticed you because you're from SLO town. I am from Santa Maria and went to Cal Poly, graduated in 96. I am in the Phoenix area but always enjoy trips back home. Also, I see that your cancer is similar to mine, though I have not found out yet about BRAF. Since you are BRAF+ did you use targeted therapy (Tafinlar, Mekinist)? I hope to hear from you soon.

    -Andy

  • Lundmusik's Avatar

    Lundmusik wrote on caensminger's wall

    Thanks for the longer explanation! Very impressive journey!!

  • Lundmusik's Avatar

    Lundmusik wrote on caensminger's wall

    Thx for your kind remarks. So, how long after your surgery did you/they discover the cancer had spread beyond the original site? And how was that discovered since apparently the sentinel node biopsy was not successful? Did you start with treatment right after the surgery?

    What is your treatment and status now?

    Thx so much for sharing!

    1 Comment
    • caensminger's Avatar
      caensminger

      It was about two months. I was diagnosed October 2012. Tumor removal followed by a failed sentinel lymph node biopsy (surgeon took out fatty today he thought was a lymph node).
      By December 28th, 2012 I was at UCLA. We had a suspicious lymph node, went into surgery, yadayada, lymph nodes and tissue near by where Melanoma. Stage four.
      I started immunothapy January 2013. It was yervoy. At that time it was a clinical trial I was involved in. The trial period ended after 18 months. Upon ending this treatment, a CT showed some spots in the lungs that seemed fine, until they grew upon the ceasing of treatment. So I returned to yervoy (it just got FDA approval). The tumors shrunk until we couldn't see them anymore.
      Yervoy was easy. Few, if any side effects. I stayed on yervoy until I had a seizure. The Melanoma had spread to my brain.

      As it turns out, Melanoma data that matters, is really new. Working with a teaching hospital helps because so much is new.
      The other side of the coin is, while immunotherapy works really well (and easy) for stopping Melanoma in the body, there is growing evidence it doesn't get through the blood/brain barrier well.

      So we did some surgeries to remove the big tumor. Gamma knife radiated the tumor bed plus a couple small tumors.

      I graduated :( beyond immunotherapies available. I'm on an old school chemo that has a track record of getting through the blood/brain barrier. Plus, some body tumors that have popped up, have shrunk. I'm on month three of this chemo.

      I get body CT and a brain MRI every 8-10 weeks. We'll gamma knife the brain if a tumor needs attention. Might radiate body tumors if they need attention. My hope right now is the chemo keeps it at bay for a few more months. I've already eeked out 5.5 years from a terminal diagnosis from the get go.

      Ask anything. But good luck on your journey!

      3 months ago
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    caensminger shared an experience

    Other Care (Home care): Home nurses come over three times per week for dressing changes, vitals, picc line maintenance, etc.