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new to posting, not new to melanoma

Forums General Melanoma Community new to posting, not new to melanoma

  • Post
    baseballmom
    Participant

      I have been reading the posts on this site for quite some time now and have gotten much hope and inspiration from them.  I never felt like I needed to post, but now I do.  I was diagnosed with a choroidal melanoma (in the eye) in 1/09.  I opted for enulceation (removal of the eye) in 2/09 and was fitted for a prosthetic in 4/09.  On my first round of rescans in June of 09 a small spot was found on my right temporal lobe.  My neurosurgeon was able to remove the spot by doing a craniotomy and get 2mm clean margins.  In August of 09 I was given the choice of gamma

      I have been reading the posts on this site for quite some time now and have gotten much hope and inspiration from them.  I never felt like I needed to post, but now I do.  I was diagnosed with a choroidal melanoma (in the eye) in 1/09.  I opted for enulceation (removal of the eye) in 2/09 and was fitted for a prosthetic in 4/09.  On my first round of rescans in June of 09 a small spot was found on my right temporal lobe.  My neurosurgeon was able to remove the spot by doing a craniotomy and get 2mm clean margins.  In August of 09 I was given the choice of gamma knife for added precaution.  I chose to do it and all was going along well.  I was getting tested every 2 months, mainly MRI's of my head and PET scans.  In March of 10, a very small spot was found on my left temporal lobe which was too small for surgery and we were able to hit it with gamma knife and that took care of it.  My head MRI's have been clean since.  I just had a PET scan because it had been about 10  months since my whole body had been checked.  Well, they found increased uptake in the liver.  Had a CT scan and it confirmed what the PET found.  The doc was ready to lay out a plan for treatment but thought I looked too good for what the scan showed, so he did a liver biopsy and of course they confirmed melanoma. 

      I am freaking out.  It has taken 4 weeks up to now for all the tests and results.  I see Dr. Donald Lawrence at Mass General next week and will start clinical trials, but of what, I'm not sure.  I haven't really been this scared since my initial diagnosis.  I even mention the word liver to people and just the look on their faces makes me feel like I have a death sentence.  I have 3 kids, 17,14 and 8 and am just not ready or willing to leave them yet.  I know this will be the hardest part of the fight, but I am ready for it.  At this point, I just want things to get started. 

      Does anyone have any advice to offer, I have told the docs I will do anything and everything, any suggestions??

      Karen

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        dawn dion
        Participant

          I do not have any words of advice concerning your situation – I am pretty new to this whole melenoma thing myself – but being a mom of two 6 and 8 let me offer you my best wishes and encouragement.  I myself am ready to fight.  It is amazing what having kids will give you the will to do.    I understand your fear and confusion and again my thoughts and prayers are out there for you.

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          dawn dion
          Participant

            I do not have any words of advice concerning your situation – I am pretty new to this whole melenoma thing myself – but being a mom of two 6 and 8 let me offer you my best wishes and encouragement.  I myself am ready to fight.  It is amazing what having kids will give you the will to do.    I understand your fear and confusion and again my thoughts and prayers are out there for you.

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            mygirlmaddy
            Participant

              Hi Karen,

                  Dr. Lawrence is wonderful.  We will also be there next week to start Ipilimumab compassionate but have been patients of his for almost a year.  My best advice is to tell you that you are in great hands but still ask lots of questions.  There are so many variables that determine what you can and can't do and I don't understand them all.  Dr. Lawrence does and his staff is knowledgeable and friendly so don't be afraid of the experience.  They will take good care of you but ultimately your treatment is in your hands.  Be armed with some knowledge of what clinical trials are available ( I can tell you that Ipilimumab, MDX 1106 and BRAF are just a few) and which ones make sense for you.

                  I wish I could take the fear away for you.  In my case it is my husband who has melanoma and the part that gets me every time is the fear of telling our daughter that he might not make it.  Thankfully that day has not come for him, nor has it come for you so hang on to your hope.  It's the most powerful healer.

              Best wishes,

              Audrey

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              mygirlmaddy
              Participant

                Hi Karen,

                    Dr. Lawrence is wonderful.  We will also be there next week to start Ipilimumab compassionate but have been patients of his for almost a year.  My best advice is to tell you that you are in great hands but still ask lots of questions.  There are so many variables that determine what you can and can't do and I don't understand them all.  Dr. Lawrence does and his staff is knowledgeable and friendly so don't be afraid of the experience.  They will take good care of you but ultimately your treatment is in your hands.  Be armed with some knowledge of what clinical trials are available ( I can tell you that Ipilimumab, MDX 1106 and BRAF are just a few) and which ones make sense for you.

                    I wish I could take the fear away for you.  In my case it is my husband who has melanoma and the part that gets me every time is the fear of telling our daughter that he might not make it.  Thankfully that day has not come for him, nor has it come for you so hang on to your hope.  It's the most powerful healer.

                Best wishes,

                Audrey

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                Jerry from Cape Cod
                Participant

                  Hi Karen,

                  Dr. Lawrence is great and melanoma on the liver is not a "death" sentance.  It's not easy.

                  Here's a link to a blog you might like to read from a very good friend.

                  http://joanandian.blogspot.com/search?updated-min=2011-01-01T00%3A00%3A00-04%3A00&updated-max=2012-01-01T00%3A00%3A00-04%3A00&max-results=1

                  The story may give you a little inspiration and a lot of hope.

                  Best regards,

                  Jerry from Cape Cod

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                  Jerry from Cape Cod
                  Participant

                    Hi Karen,

                    Dr. Lawrence is great and melanoma on the liver is not a "death" sentance.  It's not easy.

                    Here's a link to a blog you might like to read from a very good friend.

                    http://joanandian.blogspot.com/search?updated-min=2011-01-01T00%3A00%3A00-04%3A00&updated-max=2012-01-01T00%3A00%3A00-04%3A00&max-results=1

                    The story may give you a little inspiration and a lot of hope.

                    Best regards,

                    Jerry from Cape Cod

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                      Laurie from maine
                      Participant

                        hi,

                        I am afraid I am not much help information wise.   I would  like to add that I also I love Dr Lawrence and his staff.  I am praying that your appt with him brings you information and hope.    Please let us know how it goes.

                        Laurie from maine

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                        Laurie from maine
                        Participant

                          hi,

                          I am afraid I am not much help information wise.   I would  like to add that I also I love Dr Lawrence and his staff.  I am praying that your appt with him brings you information and hope.    Please let us know how it goes.

                          Laurie from maine

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                          LynnLuc
                          Participant

                            Jerry so how are you doing? What is the immune modulator you were put on, I am just curious. I have one more round in the regular part of Dr Weber's Anti PD 1/vaccine trial and then I go on to booster IV's of the Anti PD1 once every 3 months (…Dr Weber said he thinks its a promising trial and for a Dr to ever say—promising and melanoma in the same sentence is rare…I remain NED now for nearly 11 months!

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                            LynnLuc
                            Participant

                              Jerry so how are you doing? What is the immune modulator you were put on, I am just curious. I have one more round in the regular part of Dr Weber's Anti PD 1/vaccine trial and then I go on to booster IV's of the Anti PD1 once every 3 months (…Dr Weber said he thinks its a promising trial and for a Dr to ever say—promising and melanoma in the same sentence is rare…I remain NED now for nearly 11 months!

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                            baseballmom
                            Participant

                              Hi Everyone and thank you for your advice.  I got a call from Dr. Lawrence's nurse the other day and I feel better already.  She said there is little disease, nothing anywhere else and my other spots that were dealt with previously were so small.  She also said that the doc will lay out several options including chemo, interleukin (?spelling), and targeted liver therapy.  I feel like there's hope and I haven't even met with the doc yet!

                              I will post again after my appt tomorrow and thank you again, thank you especially for the link to the blog.  It helped a lot!

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                              baseballmom
                              Participant

                                Hi Everyone and thank you for your advice.  I got a call from Dr. Lawrence's nurse the other day and I feel better already.  She said there is little disease, nothing anywhere else and my other spots that were dealt with previously were so small.  She also said that the doc will lay out several options including chemo, interleukin (?spelling), and targeted liver therapy.  I feel like there's hope and I haven't even met with the doc yet!

                                I will post again after my appt tomorrow and thank you again, thank you especially for the link to the blog.  It helped a lot!

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