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12 Years NED after Brain Met!!! NEVER EVER GIVE UP HOPE!!!
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12 Years NED after Brain Met!!! NEVER EVER GIVE UP HOPE!!!

› Forums › General Melanoma Community › 12 Years NED after Brain Met!!! NEVER EVER GIVE UP HOPE!!!

  • Post
    • March 18, 2014 at 10:12 pm
    Carole K
    Participant

       

      Hi Everyone,

      I was once very active on this board and took a Sabbatical when my daughters blessed me with Grandchildren.. I am back now and if I can be of any help , know I am here for you.  MPIP was a huge support for me and many others for many many years,  At that time it was owned by Jeff and Lori Patterson.

      I met incredible people through MPIP that I am still in touch with,.  In fact two people whom I met when I was diagnosed with my brain met are two of the most special people in the world to me.  MPIP, is filled with people who have a wealth of knowledge, willing and eager to share with all of you. 

      Chat was a wonderful place to go to release the stress, find information and connect with people.  I organzied get togethers in Ashveille, Florida and California.  Many of us who lived in the same area got together as well. The support could not be measured.  I promise once you get used to chat you will meet awesome people who will become friends of a lifetime, 

      My journey with MM began in 1995 with an ulcerated mole on nmy back,  The treatment of choice was Interferon at the time and my doctor chose a wait and see approach, To this day I am eternally grateful to him.  Has I done INF.  I don't know if I would be here today.  I did really well until 4 months shy of 5 years when I was dx with lung mets in both lungs.  I was a patient at Sloane Kettering at the time and the suggestiosn was to have my one lung removed.  I flew to JWCI who conferred with Sloane Kettering,  At that point I had a PET Scan at JWCI which lit up like a Chritmas Tree.  It shouwed nets to my liver my spleen, lungs and on and on.  I am not sure why, but I chose a wait and see attitude and began seeing an East West Dorctor in NYC.  He recommended an oncologist at NYU, assuring me he didn't think I could grt an appt with him.  I called the next day and God must have known I needed the Appt.  They had a cancellation that week.  I believe he, Dr. Abe Chachoua from NYU Langhone Medical Center saved my life,  After doing a full body scan he suggested a Brain Scan.  I  laughed assruing him, there was matter up there.  The same day I had the scan he called saying something showed up on the scan and to rule out a brain met he schecduled an MRI.  I believe in my heart he probably knew it was a brain met…  Just wanted confirmation.  Confirmation we got..  I told him in plain english  I don't have time for this   _ _ _ _.  I jsut got divorced and it was tinme to LIVE, TO LOVE and TO LAUGH. 

      Both Dr. Chachoua and my neurosurgeon Dr. John Golfinos, now the head or neurosurgery at NYU wanted me to have a craniotomy to remove the tumor.  I opted for Gamma Knife.  Two days prior to GK I had an incrediblke pain behind my left eye.  I was scheduled for GK on a Wed.  Yikes, did that hurt!!!  I won't telll you what I said, just use your imagination ,  Once the Halo— (how the hell they call it a HALO I have no clue… Halo's are for Angels and an angel would not cause that much pain.  lol).  The results came back.  My tumor burst and bled.  Damn..  time for a craniotomy , which I agreed to if they did it the next day.  I had the craniotomy and thought I would do WBR.. The radiology oncologist said  Not for one met.  Now what do I do?  I spoke with my oncologist and went over th options.,  None of then were making me happy.  IN the meantime I made an appt. with an alternative doctor and a DO.  Dr. Johnson at that time incorporate anthroposohical medicine with conventiona,  Abthroposophy was started in Berlin Germany by Rudolph Steiner.  My prototcol was injextions three times per week twice a day of Astragalus, (to boost the immune systerm) Iscador ( mistletoe for the cancer ) and Formica for overall well being.  I did the inhectiosn for almost two years.,

      My oncologist was not for the treatment but respected my decision.  I am currently NED 12 years.,  I have many Blessings  a tremendous amount of support and lots of love.   Alternative medicine is NOT for everyone . It was just my choice., I did not want to be sick for the rest of the time I had left,  The night before my craniotomy I had my talk with my higher power, who to me is GOD..  I told him if it was his will for me to come home please make it quick.  If it was his will was for me to remain on this planet, I would do all I can to help others on this journey.  It has beome my passion.  NEVER GIVE UP HOPE!!!!!!

      MELANOMA has brought me FEARS

      MELANOMA has brought me  TEARS.

      MELANOMA has brought me PAIN

      MELANONA has brought me Anger

      MELANOMA has brought me FRUSTRATION

      MELANOMA has brought me DEPRESSION'

      MORE IMPORTANTLY

      MELANOMA  has brought me LOVE

      MELANOMA has brought me STRENGTH

      MELANOMA has brought me COURAGE

      MELANOMA brought me JOY

      MELANOMA has brought me LAUGHTER

      MELANOMA has brought me WISDOM

      MELANOMA has brought me SMILES

      MELANOMA has brought me FRIENDS

      MELANOMA has broght me the OPPORTUNITY TO MAKE AMENDS TO THOSE I HAVE HURT AND TO NOT LEAVE ANY UNANSWERED QUESTIONS FOR MY CHIDLREN

      MELANOMA HAS BROUGHT ME PEACE.

      What more could I ask for.

      NEVER EVER EVER GIVE UP HOPE!!!!!!!!

      Love and Light

      Carole K

      HOPE TO SEE YOU IN CHAT SOME TIME.!!!!   Know I am here for you…….

    Viewing 5 reply threads
    • Replies
        • March 19, 2014 at 9:28 pm
        tickyloo
        Participant

          Wow your message just gave me chills, I looked to see if my overhead fan was on and it wasnt, it was what I was reading. WHAT AN INSPIRATION you are. I thankfully am all very early and I am feeling all super sorry for myself having had two WLE in as many weeks and now the possibility of more tests on my neck and thyroid after a funny but not too alarming PET was sitting here tempted to post a ' what would you do '  message all because I didnt want another needle in my neck ( one of the WLE was in my neck ) and then I saw your story and told myself to buck my ideas up and pull myself together.

           

          So that is what I will do : )

           

          Thank you

            • March 20, 2014 at 6:15 pm
            Carole K
            Participant

              Tickyloo, awe so sweet of you to write such kind words.  I am actually just another patient just like you.  I have had my fair share of down times and difficulties but not like some on this board have had to face. 

              I have met sooo many wonderful people here who are my strength, courage and my hope.  When someone thanks me for reaching out to them and saying I have helped. I reply NO , THANK YOU..  You are my hope,my strength and my courage.  I get far more back than I give,  We all go through those stressful times and can get caught up not knowing what to do. Give yourself that time, cry scream, eat , do whatever you have to do to help yourself.  IN time you can begin to give yourself  "time limits" for the down time.  I go to the point I woudl give myself 15 min in the morning and at night IF I was having a tough time,. 

              Tickyloo  NEVER EVER EVER GIVE UP HOPE…. 

              Hope to see you in chat.. 

              Love and Light

              Carole

              • March 20, 2014 at 6:15 pm
              Carole K
              Participant

                Tickyloo, awe so sweet of you to write such kind words.  I am actually just another patient just like you.  I have had my fair share of down times and difficulties but not like some on this board have had to face. 

                I have met sooo many wonderful people here who are my strength, courage and my hope.  When someone thanks me for reaching out to them and saying I have helped. I reply NO , THANK YOU..  You are my hope,my strength and my courage.  I get far more back than I give,  We all go through those stressful times and can get caught up not knowing what to do. Give yourself that time, cry scream, eat , do whatever you have to do to help yourself.  IN time you can begin to give yourself  "time limits" for the down time.  I go to the point I woudl give myself 15 min in the morning and at night IF I was having a tough time,. 

                Tickyloo  NEVER EVER EVER GIVE UP HOPE…. 

                Hope to see you in chat.. 

                Love and Light

                Carole

                • March 20, 2014 at 6:15 pm
                Carole K
                Participant

                  Tickyloo, awe so sweet of you to write such kind words.  I am actually just another patient just like you.  I have had my fair share of down times and difficulties but not like some on this board have had to face. 

                  I have met sooo many wonderful people here who are my strength, courage and my hope.  When someone thanks me for reaching out to them and saying I have helped. I reply NO , THANK YOU..  You are my hope,my strength and my courage.  I get far more back than I give,  We all go through those stressful times and can get caught up not knowing what to do. Give yourself that time, cry scream, eat , do whatever you have to do to help yourself.  IN time you can begin to give yourself  "time limits" for the down time.  I go to the point I woudl give myself 15 min in the morning and at night IF I was having a tough time,. 

                  Tickyloo  NEVER EVER EVER GIVE UP HOPE…. 

                  Hope to see you in chat.. 

                  Love and Light

                  Carole

                • March 19, 2014 at 9:28 pm
                tickyloo
                Participant

                  Wow your message just gave me chills, I looked to see if my overhead fan was on and it wasnt, it was what I was reading. WHAT AN INSPIRATION you are. I thankfully am all very early and I am feeling all super sorry for myself having had two WLE in as many weeks and now the possibility of more tests on my neck and thyroid after a funny but not too alarming PET was sitting here tempted to post a ' what would you do '  message all because I didnt want another needle in my neck ( one of the WLE was in my neck ) and then I saw your story and told myself to buck my ideas up and pull myself together.

                   

                  So that is what I will do : )

                   

                  Thank you

                  • March 19, 2014 at 9:28 pm
                  tickyloo
                  Participant

                    Wow your message just gave me chills, I looked to see if my overhead fan was on and it wasnt, it was what I was reading. WHAT AN INSPIRATION you are. I thankfully am all very early and I am feeling all super sorry for myself having had two WLE in as many weeks and now the possibility of more tests on my neck and thyroid after a funny but not too alarming PET was sitting here tempted to post a ' what would you do '  message all because I didnt want another needle in my neck ( one of the WLE was in my neck ) and then I saw your story and told myself to buck my ideas up and pull myself together.

                     

                    So that is what I will do : )

                     

                    Thank you

                    • March 21, 2014 at 3:05 pm
                    Nexxus
                    Participant

                      Thank You.  

                      • March 21, 2014 at 3:05 pm
                      Nexxus
                      Participant

                        Thank You.  

                        • March 21, 2014 at 3:05 pm
                        Nexxus
                        Participant

                          Thank You.  

                      Viewing 5 reply threads

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