• eccrine100's Avatar

    eccrine100 wrote on leeranger's wall

    Hi, we have eccrine porocarcinoma in common. Mine presented as wart on my finger and treated as one for some time, then I switched to new dermatologist. He also treated it as wart but after not having much luck a biopsy was identified it as cancer. had MOHS surgery on finger instead of amputation and skin graph, good for 4.5 years then I noticed a lump under my arm. Surgery and radiation for removal of lymph nodes, looked good for almost a year. No recurrence at the surgically treated locations.

    At that point metastasis to my lungs was observed. My excellent oncologist is open to trying different treatments (insurance doesn't pay )-:). Had some good luck with Nexavar but when that stopped being effective changed to Afinitor, the biological drug I'm currently on. There will be a paper written on the Nexavar, it's almost ready for publication.

    I might get into a trial when Afinitor is no longer effective, but some question about that since the market is so small for this rare cancer.

    I've done much better than expected and really appreciate the extra years. I'm still working, my employer is very understanding. Hope you have good luck with your treatments.

    1 Comment
    • leeranger's Avatar
      leeranger

      Thanks for your message! You are the first person I've been able to find with this rare type of cancer! I am having my finger amputated next week and I'm hoping this will put an end to it all. Good luck with your treatments and I'll be checking in with you to see if anything new is revealed!

      about 4 years ago
  • eccrine100's Avatar

    eccrine100 wrote on Nickyinflorida's wall

    Sorry to hear you are having so much trouble with support. I see you already have some good recommendations for finding better support so be sure and let us know how that works for you. I also went the MOHS route, turned out to be all day with lots of hour breaks while they checked and I "relaxed" around the hospital with my open wound. I also needed plastic surgery after that came out very well.
    Don't despair, the results for me were very good. It was almost 5 years until I had to have surgery and radiation due to metastasis that didn't show up very well in my checkups. Most of the other patients I'm familiar with have had great success with followup and occasional repeats of MOHS once the initial treatment was completed. Best of luck.

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    eccrine100 started following

  • eccrine100's Avatar

    eccrine100 shared an experience

    Oh No (Diagnosed): presents and was treated as wart on finger but after several years biopsy determined it was rare skin cancer- eccrine porocarcinoma.

  • eccrine100's Avatar

    eccrine100 shared an experience

    Drug or Chemo Therapy (Chemotherapy): there was not a surgical option for lung metastasis so tried a few chemo solutions. Nexavar and Afinitor provided temporary positive results, currently on afnitor. These drugs are normally used for kidney/liver cancers.

    Since my skin cancer eccrine porocarcinoma is so rare no standard treatments are available. My concern at this point is exactly "what next". Looking for any trials or other drugs that might have proved useful.

    1 Comment
    • rvaldez0977's Avatar
      rvaldez0977

      Did you ever find any trials? I have Eccrine adenocarcinoma

      almost 3 years ago
  • eccrine100's Avatar

    eccrine100 shared an experience

    Drug or Chemo Therapy (Bone strengthening drugs): after a year metastasis to lung occurred, with a few ribs impacted. Zometa infusion for bones.