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Seeing two specialists today.

Forums General Melanoma Community Seeing two specialists today.

  • Post
    Carmon in NM
    Participant

    It's been a long time since I had any fear or anxiety about seeing doctors so I was very surprised when I had a full blown anxiety attack yesterday about today's appts to see a neurologist and radiology oncologist to discuss whole brain radiation and radiation therapy at the adrenal tumor site. I ended up taking xanax for the first time in nearly two years.

    It's been a long time since I had any fear or anxiety about seeing doctors so I was very surprised when I had a full blown anxiety attack yesterday about today's appts to see a neurologist and radiology oncologist to discuss whole brain radiation and radiation therapy at the adrenal tumor site. I ended up taking xanax for the first time in nearly two years.

    I think what set me off was that I never expected to be NED again. I figured the best I could hope for was stable disease and that treatment decisions would be as easy as just continuing to move forward. Now here I am adjusting to having no measurable disease after a year of brain surgery, gamma knife surgery and chemo in a clinical drug trial so suddenly I have a whole lot to lose again. I'm just sharing this so that newer folks to this disease will know that all of us have our ups and downs, even after you've gotten the incredible news of being NED!

    After my onc suggested WBR and radiation therapy as a prophylactic treatment, I dove back into the information stream and my husband and I have agreed to hold WBR as a last resort only. I have had no met activity in my brain for a year now so it makes no sense to us to take the risks of WBR as a preventative when there may be nothing to prevent. Plus, if I have active cells somewhere else in my body that later on migrate to my brain and throw a party again, then I would have lost that WBR option. So we are sticking to regular scans and hoping that if anything turns up, we can use gamma knife again to treat it.

    I'm on the fence about radiation therapy to the adrenal tumor site though. It makes sense to me to do a prophylacic treatment there to make sure no stray cells are still living after chemo but I'm concerned about the affects to my body since the radiation would be happening in an organ intense area. So hopefully after today I'll have enough information to make that decision as well.

    And just so you know, today I woke up happy, confident and with my sense of humor back intact again!

    Carmon in NM – Stage IIIb 9/2008, Stage IV 5/2010 with brain and adrenal mets (craniotomy, gamma knife, clinical trial with carboplatin, paclitaxel, temodar) NED since 4/13/2011

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      Carol Taylor
      Participant

      Celebrating and being happy with you, Carmon!

      May you stay Xanax and cancer free for many years to come!
       

      Lord, thank you for Carmon's good news and continue to bless her with happiness and humor. In Your mercy. Amen.

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        Vermont_Donna
        Participant

        Carmon, I know exactly how you feel! And since I no longer trust myself and my anxiety, as I have had so many panic attacks, I just carry my lorazapam with me everywhere. My last big attack, in public, was when my surgeon talked to me calmly about above the knee leg amputation, last December. It was my first infusion day for Ipi, and I just had faith that Ipi would work. (My melanoma oncologist himself came to get me from the waiting room upon my arrival, think the surgeon had alerted him to my distress), and I got some IV Ativan.

        I think you have though throught the two treatments and have a good game plan. I know right where the adrenal gland is as mine has been watched for years now, appearing larger, but stable, so we have not done anything about it. It is jammed pack with vital organs in the area. Thats a tough call. How targeted can the radiation beam get?? I would ask about that. I know you get some scatter radiation but usualy that is so much less. Does your radiation oncologist diagram out everything for you, and take color photos of the area? Mine had many diagrams calculated out from the workup and went over them with me in great detail. There is so much more to radiation treatments that I ever knew about til melanoma.

        Good luck with your sorting through these issues, but you are right on target I think.

        Hugs from Spring time in Vermont, where the peepers have started (finally) peeping!

        Vermont_Donna, stage 3a

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        Vermont_Donna
        Participant

        Carmon, I know exactly how you feel! And since I no longer trust myself and my anxiety, as I have had so many panic attacks, I just carry my lorazapam with me everywhere. My last big attack, in public, was when my surgeon talked to me calmly about above the knee leg amputation, last December. It was my first infusion day for Ipi, and I just had faith that Ipi would work. (My melanoma oncologist himself came to get me from the waiting room upon my arrival, think the surgeon had alerted him to my distress), and I got some IV Ativan.

        I think you have though throught the two treatments and have a good game plan. I know right where the adrenal gland is as mine has been watched for years now, appearing larger, but stable, so we have not done anything about it. It is jammed pack with vital organs in the area. Thats a tough call. How targeted can the radiation beam get?? I would ask about that. I know you get some scatter radiation but usualy that is so much less. Does your radiation oncologist diagram out everything for you, and take color photos of the area? Mine had many diagrams calculated out from the workup and went over them with me in great detail. There is so much more to radiation treatments that I ever knew about til melanoma.

        Good luck with your sorting through these issues, but you are right on target I think.

        Hugs from Spring time in Vermont, where the peepers have started (finally) peeping!

        Vermont_Donna, stage 3a

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      Carol Taylor
      Participant

      Celebrating and being happy with you, Carmon!

      May you stay Xanax and cancer free for many years to come!
       

      Lord, thank you for Carmon's good news and continue to bless her with happiness and humor. In Your mercy. Amen.

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