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September 11 2001 in our house
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September 11 2001 in our house

› Forums › General Melanoma Community › September 11 2001 in our house

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    • September 11, 2011 at 7:31 pm
    arborbnb
    Participant

      September 11, 2001 was a very strange day in our house.  the world was in chaos with the news of the Twin Towers.  In our house there was joy because my husband Peter, who was newly diagnosed Stage 3 had his scans and we got the call in the afternoon they were clear!!!!

       

      Now … 10 years later after IFN, surgeries and radiation we  rejoice in our good luck.

       

      September 11, 2001 was a very strange day in our house.  the world was in chaos with the news of the Twin Towers.  In our house there was joy because my husband Peter, who was newly diagnosed Stage 3 had his scans and we got the call in the afternoon they were clear!!!!

       

      Now … 10 years later after IFN, surgeries and radiation we  rejoice in our good luck.

       

      Keep up the fight …. Peter was one of the "responders" to IFN and although they never say he is cured, he has seen two grandchildren born, returned to work, tries to swim a kilometer 3 times a week ( in spite of an axillary node dissection and nasty radiation burns) ………

       

      There is hope.  Now we are dealing with a daughter with a diffuse astrocytoma.  Treatment for this disease is in the dark ages and difficult and very wait and seel.  The prognosis long term is not good.

       

      Julie in Prince George, BC Canada

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    • Replies
        • September 12, 2011 at 11:57 am
        Donna M.
        Participant

          Thank you for this Julie.  Everyone who posts good long-term results after IFN gives me hope (I just started 8/22) that I will be as fortunate years down the road.  Congratulations to your husband!

          Sending good thoughts and prayers for your daughter as well. 

          • September 12, 2011 at 11:57 am
          Donna M.
          Participant

            Thank you for this Julie.  Everyone who posts good long-term results after IFN gives me hope (I just started 8/22) that I will be as fortunate years down the road.  Congratulations to your husband!

            Sending good thoughts and prayers for your daughter as well. 

            • September 12, 2011 at 6:02 pm
            bcl
            Participant

              Hi Julie, thank you for sharing such great news about your husband Peter! I also live in BC and get the impression our melanoma treatments are lacking- so hearing about  long term survivors is music to my ears!

              Very sorry to hear about your daughter's diagnosis though.  Just in case you are not aware of this, I will give you a link to the US clinical trial data base to search for Canadian trials.  At a quick glance, there appears to be a few for astrocytoma in Alberta, none in BC though. http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=9559779

              On another happy note, not sure if you saw the local news, but at least one other BC family will have good sept 11 memories, little 3 year old Kienan Hebert was returned home safely to his family yesterday!  http://www.canada.com/news/Missing+returned+home/5384761/story.html

              Best of luck to you and your family, linda

              • September 12, 2011 at 6:02 pm
              bcl
              Participant

                Hi Julie, thank you for sharing such great news about your husband Peter! I also live in BC and get the impression our melanoma treatments are lacking- so hearing about  long term survivors is music to my ears!

                Very sorry to hear about your daughter's diagnosis though.  Just in case you are not aware of this, I will give you a link to the US clinical trial data base to search for Canadian trials.  At a quick glance, there appears to be a few for astrocytoma in Alberta, none in BC though. http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=9559779

                On another happy note, not sure if you saw the local news, but at least one other BC family will have good sept 11 memories, little 3 year old Kienan Hebert was returned home safely to his family yesterday!  http://www.canada.com/news/Missing+returned+home/5384761/story.html

                Best of luck to you and your family, linda

                • September 12, 2011 at 6:20 pm
                arborbnb
                Participant

                  Thanks Linda – yes that was amazing about Keiran … absolute miracle.  I am the person responsible for getting the BCCA to fund IFN for Stage 3 Mel…. was a huge fight.  I can't believe that there doesn't seem to be anything out there more targetted 10 years later as the side effects can be daunting.

                  Thanks for the clinical trials link and I will forward it to my daughter in Toronto.  She has a grade 2 diffuse astro and there is very little out there to keep it grade 2.  They wait until it is an anaplastic or Glioblastoma before they seem to be interested and by that time things are dire.  She is well but is a 40 year old Mom living one MRI to the next.  Not exactly what I planned for her.

                  • September 12, 2011 at 6:20 pm
                  arborbnb
                  Participant

                    Thanks Linda – yes that was amazing about Keiran … absolute miracle.  I am the person responsible for getting the BCCA to fund IFN for Stage 3 Mel…. was a huge fight.  I can't believe that there doesn't seem to be anything out there more targetted 10 years later as the side effects can be daunting.

                    Thanks for the clinical trials link and I will forward it to my daughter in Toronto.  She has a grade 2 diffuse astro and there is very little out there to keep it grade 2.  They wait until it is an anaplastic or Glioblastoma before they seem to be interested and by that time things are dire.  She is well but is a 40 year old Mom living one MRI to the next.  Not exactly what I planned for her.

                      • September 12, 2011 at 7:26 pm
                      bcl
                      Participant

                        Wow Julie, I am very impressed, well done getting the BCCA to change policies and fund INF!!   ( I have a friend with multiple primaries who was recently offered something, not sure what, but perhaps it was INF)

                        I'm working on getting teens banned from tanning beds in BC- been successful on lower Vancouver Island, and the Premier seems to be listening – she responded to my request this spring. (Copying the Minister of Health-  the following week he announced to the media they were working on an under 18 ban!! ) Now I just have to convince them to make a  few not so minor enhancements:)

                        My heart goes out to your daughter, if I can see something positive in all this, it is the fact she has a mom who does not give up!

                        • September 12, 2011 at 7:26 pm
                        bcl
                        Participant

                          Wow Julie, I am very impressed, well done getting the BCCA to change policies and fund INF!!   ( I have a friend with multiple primaries who was recently offered something, not sure what, but perhaps it was INF)

                          I'm working on getting teens banned from tanning beds in BC- been successful on lower Vancouver Island, and the Premier seems to be listening – she responded to my request this spring. (Copying the Minister of Health-  the following week he announced to the media they were working on an under 18 ban!! ) Now I just have to convince them to make a  few not so minor enhancements:)

                          My heart goes out to your daughter, if I can see something positive in all this, it is the fact she has a mom who does not give up!

                          • September 12, 2011 at 8:39 pm
                          arborbnb
                          Participant

                            You must know Joan Robinson?

                            • September 12, 2011 at 8:39 pm
                            arborbnb
                            Participant

                              You must know Joan Robinson?

                              • September 12, 2011 at 8:39 pm
                              arborbnb
                              Participant

                                You must know Joan Robinson?

                                • September 12, 2011 at 8:39 pm
                                arborbnb
                                Participant

                                  You must know Joan Robinson?

                                  • September 12, 2011 at 10:09 pm
                                  bcl
                                  Participant

                                    Yes I do; Joan found me a few years ago when I wrote to our local paper complaining about inadequate  ABCD warning signs. She introduced me to this site and was a big support when it came to the CRD public hearings – public support for the bylaw made it happen this time around ( The medical health officer had tried 5 years ago, but from what I could see,  had no patient advocates.)  Julie, mom of Ceri also came to the hearings.

                                    The ABCD warning brochures are still in place at the CCS- I am hopeful that someday they will include E  ( E for evolve, change — mine itched, but I ignored it because I had no idea itching was a bad sign..) For now I am focusing on things I can change:)

                                    • September 12, 2011 at 10:09 pm
                                    bcl
                                    Participant

                                      Yes I do; Joan found me a few years ago when I wrote to our local paper complaining about inadequate  ABCD warning signs. She introduced me to this site and was a big support when it came to the CRD public hearings – public support for the bylaw made it happen this time around ( The medical health officer had tried 5 years ago, but from what I could see,  had no patient advocates.)  Julie, mom of Ceri also came to the hearings.

                                      The ABCD warning brochures are still in place at the CCS- I am hopeful that someday they will include E  ( E for evolve, change — mine itched, but I ignored it because I had no idea itching was a bad sign..) For now I am focusing on things I can change:)

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