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    pglurie wrote on kayemsmom's wall

    Hi. I also have melanoma. I llive nearby. Where are you going for treatment and how are you doing?

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    pglurie posted an update

    I have chosen not to do interferon. I did not get the IPI in the clinical trial. I am stage 3 b and it seems there is not other treatmtn. I feel lost and unsure of what to do or do nothing. Any suggestions?

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    • DaveWaz's Avatar
      DaveWaz

      This would be a good question to ask the network. You can do this by clicking on the "Ask Network" link on your logged in home page or the "Questions" link at the top of this page. When you post needs/questions using our question feature, we route your question to everyone in the network who might be able to help. Also, know you can use the "Update" feature

      over 4 years ago
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    pglurie wrote on PamK's wall

    It never hurts to get another opinion even if it is far away. You do not have to work with the far away people, but knowing how confusing it all is, it might help.

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    • PamK's Avatar
      PamK

      Actually this will be the first oncologist I will speak to. Have been referred to Dr. Kashani-Sabet of California Pacific Medical Center, Melanoma Treatment Center and finally got an appointment for Feb 6th. Am curious if anyone has had experience with this facility or these docs?

      It has been over a month since I was diagnosed and I still don't know what stage my cancer is, or any other details beside the fact that the cancer extended 2.29 mm. My dermatologist told me this puts me at intermediate risk and strongly suggested I consult with the melanoma specialists in San Fran (4 hours away).

      I am going but my concern is that any treatment he may suggest may have to be done in San Fran, which will greatly add to the expense of the treatment. Something I am sure insurance will not cover.

      over 4 years ago
    • PamK's Avatar
      PamK

      Am I correct in understanding that both interferon and IPI are offered only through clinical trial? There are no other adjuvant or chemotherapies currently used for melanoma?

      over 4 years ago
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    pglurie shared an experience

    Decision Point: After a great deal of back and forth and frustration from the oncologist I dropped out of the clinical trial. I was put into the interferon side and could not in good faith give up a year of my life for a very uncertain result. I decided to instead wait for another trial or just take care of myself emotionally and spritually and physically. I feel good about my decision. I had the now diagnosed melanoma for about 20 years, but no one thought it was anything to be concerned about. Can you imagine I was diagnosed this year as Stage #3 malignant melanoma after all this time carrying the disease...

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    • DaveWaz's Avatar
      DaveWaz

      Sounds like you made the best decision for your own peace of mind. Know that we support you every step of the way.

      over 4 years ago
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    pglurie wrote on Janice's wall

    Thank you for your response to my concerns. You have had quite a long journey with this insidious disease. I am just starting the journey. There was no noticable skin lesion but a swollen lymph node. In about one week I'll know which trial drug I will get; ipi or interferon. Wish me luck with the next phase of what has taken over my life. Good luck and good doctors for your next step.