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I am blessed BUT…

Forums General Melanoma Community I am blessed BUT…

  • Post
    LynnLuc
    Participant

    Just bummed and walking back in my mind again…

    In 1992 0r 1993 ( I forget!)  I had that spot on my neck that looked like a flat brown long freckle about 1 in long. The Army doc's sent it off to Walter Reed ( my ex was stationed in Stuttgart) and the report came back as Lentigo maligna and that that it was not likely to spread to other parts of my body although it was still melanoma… told me not to worry…

    Then in 2000it came back in the same place as the purple round spot raised up like an eraser on a pencil.

    Just bummed and walking back in my mind again…

    In 1992 0r 1993 ( I forget!)  I had that spot on my neck that looked like a flat brown long freckle about 1 in long. The Army doc's sent it off to Walter Reed ( my ex was stationed in Stuttgart) and the report came back as Lentigo maligna and that that it was not likely to spread to other parts of my body although it was still melanoma… told me not to worry…

    Then in 2000it came back in the same place as the purple round spot raised up like an eraser on a pencil.

    Gross Description:

     Diagnosis: Malignant Melanoma. Clark's Level 3. Tumor Thickness 1.45mm. The Margins of Excision appear uninvolved. Consider re-excision.

     Microscopic Description:

    Within the dermis is a tumor composed of sheets of mildly atypical melanocytes some of which are pigmented. The pattern is consistent with malignant melanoma and involves a widened papillary dermis. Unequivocal invasion into the reticular dermis is identified. There are a few atypical melanocytes within the epidermis although pagetoid spread is not a prominent component. Tumor thickness is measured 1.45 mm. The margins of excision appear uninvolved. A re-excision  is a consideration. Correlate clinically.

    ————————————————–

    SO..I went back and had it re-excised…and  5 sental lymph nodes removed from my neck…all were clear. Nothing was recommended as follow up.

    —————————–

    In May and early June 2009 I was having trouble breathing and a few other issues I found out something was growing close to my superior vena cava and if they didn't stop it -it would cut off all blood to the top half of my body and I would die… when they used a Storz video mediastinoscope at Mayo Clinic and the surgeon found a very enlarged black right paratracheal lymph node they cold only get a few bits of tissue for biopsy purposes but they couldn't remove it…it wasmetastatic malignant melanoma. They recommended radiation and Temodar and told me I would be dead in 6-9 months..it was devastating… The surgeon said he would not consider surgery to remove it because of the dangerous location of it…he said it would need to get down to the size of a bb before he would consider surgery.

    The chemo and radiation had was keeping the "thing" inactive…

    In Feb 2010 while getting ready for a trial in Seattle I had a PET and my SUV jumped…my local North Dakota onc didn't want to anything until it got "bad"…and decided it was time to go back to Mayo for another opinion again…this time I asked about surgery and they set up a consult…since I had no spread and it had just begun to show activity after several months- the surgeon agreed to do a thoracotomy..my Mayo onc was under the impression it was 4- 4.5 cent melanoma  in a single lymph node…the surgeon did say he saw a little spot from the initial tests a year before that had no changed in size or shape…but wanted to remove it by wedge resection as well…March 26, 2010-It was a rough surgery and he took out 3 lymph nodes…the middle one held the melanoma and it was actually 6.8 cent. A lot of the melanoma was necrotized and that is why it didn't show up on the PET. The tiny spot he removed  by wedge resection was just a lymph node and not melanoma..

    Now I in the second 12 week cycle of my vaccine trial at Moffitt and I am still NED…I hope it never comes back…

    I am feeling very blessed and I am also feeling very guilty…I want to know why I am doing well and some of my friends aren't…did my original diagnosis of Lentigo maligna play a role in it? I want to know why I am different…any idea's…Hey Jimmy….you out there?? I have 3 friends not doing so hot right now and I am bummed out. 

     

     

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      LynnLuc
      Participant

      correction…was tired last night…the reocurance actually came back in 1996 or there abouts…my son was getting treatment for a rare cancer and I didn't get my melanoma taken care of til 2000…

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      LynnLuc
      Participant

      correction…was tired last night…the reocurance actually came back in 1996 or there abouts…my son was getting treatment for a rare cancer and I didn't get my melanoma taken care of til 2000…

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        jim Breitfeller
        Participant

        Hey Lynn,

        I am always out here.  I am very glad to hear you are still NED. As for your other friends, just give them my email and i will try to help in any way.

        2011 will be the Year of Combinatorial therapy. If Yervoy (Ipi) gets approved, we will be off to the races.

        It could happen  Braf + MEK+ Ipi

        IFN+DTIC +IPI+ HD IL-2

        Vaccine+ Ipi + IL-2

        IFN+DTIC + DC + Ipi + Hd IL-2

        Lets jump start the Immune system!!!!!!!

        Jimmy B

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        jim Breitfeller
        Participant

        Hey Lynn,

        I am always out here.  I am very glad to hear you are still NED. As for your other friends, just give them my email and i will try to help in any way.

        2011 will be the Year of Combinatorial therapy. If Yervoy (Ipi) gets approved, we will be off to the races.

        It could happen  Braf + MEK+ Ipi

        IFN+DTIC +IPI+ HD IL-2

        Vaccine+ Ipi + IL-2

        IFN+DTIC + DC + Ipi + Hd IL-2

        Lets jump start the Immune system!!!!!!!

        Jimmy B

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      jim Breitfeller
      Participant

      Lynn,

      This is what may have happen to you minus the Ipi. The Chemo and the Radiation may have shed some Tumor-specific antigens from dying tumor cells and they also secreted HMBG1. This set in motion the Danger signal with the proinflammatory cytokines and chemoattractants in the tumor's microenviroment. The Immune cells were recruited to tumor site. The vaccine is like the flu shot. If melanoma returns, Hopfully your memory T-cells will send out the alarm and induce T-cell Activation.

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      jim Breitfeller
      Participant

      Lynn,

      This is what may have happen to you minus the Ipi. The Chemo and the Radiation may have shed some Tumor-specific antigens from dying tumor cells and they also secreted HMBG1. This set in motion the Danger signal with the proinflammatory cytokines and chemoattractants in the tumor's microenviroment. The Immune cells were recruited to tumor site. The vaccine is like the flu shot. If melanoma returns, Hopfully your memory T-cells will send out the alarm and induce T-cell Activation.

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        LynnLuc
        Participant

        Thanks Jimmy,

        I am wondering if it was the primary diagnosis of Lentigo Maligna…historically I think it was considered slow growing and showed up in older people…I do wonder if the Temodar and radiation killed off a lot of mine…

        and then having surgery…I know the Anti PD 1 and the peptides sure cause t-cell responses in me and continue  as well…when I get a treatment the previous 2 or 3  treatment sites still get hot and lumpy and red…my thyroid is an unpredictable yo-yo but oh well I can take meds forever…I like the word "forever" beats  the word "dead"!

        I am happy to be NED and I want my friends to stop spreading too! I am angry about the disease and the treatment some of them are getting in clinical trials…seems like some tend to have onc's with deaf ears and  just keep a conventional chemotherapy trial going  even if all the patients drop out/ and or die and my friend was the lone guinea pig…

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        LynnLuc
        Participant

        Thanks Jimmy,

        I am wondering if it was the primary diagnosis of Lentigo Maligna…historically I think it was considered slow growing and showed up in older people…I do wonder if the Temodar and radiation killed off a lot of mine…

        and then having surgery…I know the Anti PD 1 and the peptides sure cause t-cell responses in me and continue  as well…when I get a treatment the previous 2 or 3  treatment sites still get hot and lumpy and red…my thyroid is an unpredictable yo-yo but oh well I can take meds forever…I like the word "forever" beats  the word "dead"!

        I am happy to be NED and I want my friends to stop spreading too! I am angry about the disease and the treatment some of them are getting in clinical trials…seems like some tend to have onc's with deaf ears and  just keep a conventional chemotherapy trial going  even if all the patients drop out/ and or die and my friend was the lone guinea pig…

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