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Stuck on what to do

Forums General Melanoma Community Stuck on what to do

  • Post
    christie
    Participant

      Does anyone have any suggestions on what I can ask or suggest to our doctors?  My husband was diagnosed with Stage 3 Melamona in 2010.  He did the year of Interferon and completed it November last year.  He had been doing very well until recently.  He was having problems so we went to the doctors and a ct was done.  He has a 3 cm mass in the front part of his brain.  They have put him on steroids but to me, it doesn't seem like they are helping (he is in the hospital).  He was scheduled for the Gamma Knife but we found out yesterday there is a tum

      Does anyone have any suggestions on what I can ask or suggest to our doctors?  My husband was diagnosed with Stage 3 Melamona in 2010.  He did the year of Interferon and completed it November last year.  He had been doing very well until recently.  He was having problems so we went to the doctors and a ct was done.  He has a 3 cm mass in the front part of his brain.  They have put him on steroids but to me, it doesn't seem like they are helping (he is in the hospital).  He was scheduled for the Gamma Knife but we found out yesterday there is a tumor in his spine.  They have now told us that the Gamma Knife won't happen and are just going to make him comfortable.  They are doing radiation on his spine but that is it. 

      Is there something that might help him?  We are in Manitoba, Canada.  No Melanoma center, just an Oncogist in Winnipeg that lets the Cancer Center where we live know what to do.  I feel helpless.

      Thanks

    Viewing 11 reply threads
    • Replies
        killmel
        Participant

          That is just unaccceptable. I would go to the USA & get consultation a Melanoma Centers of Excellence.

          killmel
          Participant

            That is just unaccceptable. I would go to the USA & get consultation a Melanoma Centers of Excellence.

            killmel
            Participant

              That is just unaccceptable. I would go to the USA & get consultation a Melanoma Centers of Excellence.

                christie
                Participant

                  When he first got sick I asked about getting him on a trial.  The oncologist told me for $180,000 we could head down to the states and maybe something "might work".  We don't have anywhere near the money for that.  Does anyone know if there is any treatment in Canada that I can suggest?

                  How long can a person live when they are just "keeping him comfortable"?  I hate to see the suffering…I am at a loss of what to do.

                  bcl
                  Participant

                    Hi Christie, I am so sorry to hear this about your husband. Please contact Kathy Barnard at the Save Your Skin Foundation. Kathy is a Canadian stage 4 survivor based in BC who devotes her time to helping others survive. She knows our Canadian system well and will likely know what is available in your area.  (The foundation will also provide financial assistance.)

                     I am early staged and have no personal experience, but I do know Kathy and know she will want to do what she can.

                     

                     

                    http://www.saveyourskin.ca/

                     

                     

                    Melanoma Support

                    Melanoma Support Resources

                     

                     
                         

                    If you would like a hard copy of materials above, please email [email protected]

                    Patient Support

                    For those living with cancer, support can be vital in the healing process. The Save Your Skin Foundation is committed to providing that support through our online chat forum and/or monthly meetings to those living with Melanoma, their families and loved ones. Melanoma Support Groups The following are melanoma support groups held throughout Canada:

                    Vancouver Kathy [email protected]
                    Kelowna Lida [email protected]
                    Edmonton Tanny [email protected]
                    Winnipeg Linda [email protected]

                    For a list of support groups in the United States, visit AIM at Melanoma http://www.aimatmelanoma.org If you would like to start a Melanoma support group in your area, please email: [email protected]

                    Financial Assistance

                    For Financial Assistance, please contact [email protected]

                    Hope Air Is a charitable organization that provides over 2,400 Flights per year. Guided by a volunteer Board of Directors, managed by a dedicated staff and utilizing the skills of many volunteers, Hope Air is committed to a single goal of Getting Canadians to getting better!

                    Canadian Cancer Society financial assistance program The Canadian Cancer Society provides limited, short-term assistance towards cancer-related transportation and accommodation expenses. Also through their partnership with the BC Cancer Agency, they are able to offer access to symptom management drugs.

                    Melanoma Websites and Regional Cancer Agencies

                    http://www.thesmartfoundation.ca

                    http://www.shadefoundation.org

                    http://www.dermweb.com

                    http://www.skinpatientalliance.ca

                    http://www.mpip.org

                    http://www.bccancer.bc.ca

                    http://www.albertacancer.ca

                    http://www.AIMatMelanoma.org

                    http://www.cancercarewest.ie

                     

                     

                     

                     

                    About the Foundation

                    Never Underestimate the Power of ONE

                    Never Underestimate the Power of ONE

                    The Save Your Skin Foundation was created by family, friends, and colleagues of Founder Kathy Barnard. Kathy is currently fighting her own battle with melanoma. The Foundation started with the dream of Kathy's sister Rose. One day as Rose was running through the beautiful trails of North Vancouver, she knew it was time to take action. The family had been through a stressful few years trying to find information on melanoma treatments and research and discovered that there was not much current information available.

                    Save Your Skin wants to change that. Our immediate goal is to raise overall awareness of melanoma and non-melanoma skin cancers. We are also committed to providing melanoma patients with access to information about available treatment options, including hard-to-find trial options. Most treatments are still in the experimental stages but are having great results.

                    Our hope is that other families don’t have to go through what Kathy and her family did. We are determined to raise awareness of this disease and to raise funds to support on-going research and treatment initiatives.

                    Objectives

                    – to provide financial assistance for education, awareness, and treatment
                    – to promote education and awareness of skin cancer
                    – to raise funds to further research treatment options

                    bcl
                    Participant

                      Hi Christie, I am so sorry to hear this about your husband. Please contact Kathy Barnard at the Save Your Skin Foundation. Kathy is a Canadian stage 4 survivor based in BC who devotes her time to helping others survive. She knows our Canadian system well and will likely know what is available in your area.  (The foundation will also provide financial assistance.)

                       I am early staged and have no personal experience, but I do know Kathy and know she will want to do what she can.

                       

                       

                      http://www.saveyourskin.ca/

                       

                       

                      Melanoma Support

                      Melanoma Support Resources

                       

                       
                           

                      If you would like a hard copy of materials above, please email [email protected]

                      Patient Support

                      For those living with cancer, support can be vital in the healing process. The Save Your Skin Foundation is committed to providing that support through our online chat forum and/or monthly meetings to those living with Melanoma, their families and loved ones. Melanoma Support Groups The following are melanoma support groups held throughout Canada:

                      Vancouver Kathy [email protected]
                      Kelowna Lida [email protected]
                      Edmonton Tanny [email protected]
                      Winnipeg Linda [email protected]

                      For a list of support groups in the United States, visit AIM at Melanoma http://www.aimatmelanoma.org If you would like to start a Melanoma support group in your area, please email: [email protected]

                      Financial Assistance

                      For Financial Assistance, please contact [email protected]

                      Hope Air Is a charitable organization that provides over 2,400 Flights per year. Guided by a volunteer Board of Directors, managed by a dedicated staff and utilizing the skills of many volunteers, Hope Air is committed to a single goal of Getting Canadians to getting better!

                      Canadian Cancer Society financial assistance program The Canadian Cancer Society provides limited, short-term assistance towards cancer-related transportation and accommodation expenses. Also through their partnership with the BC Cancer Agency, they are able to offer access to symptom management drugs.

                      Melanoma Websites and Regional Cancer Agencies

                      http://www.thesmartfoundation.ca

                      http://www.shadefoundation.org

                      http://www.dermweb.com

                      http://www.skinpatientalliance.ca

                      http://www.mpip.org

                      http://www.bccancer.bc.ca

                      http://www.albertacancer.ca

                      http://www.AIMatMelanoma.org

                      http://www.cancercarewest.ie

                       

                       

                       

                       

                      About the Foundation

                      Never Underestimate the Power of ONE

                      Never Underestimate the Power of ONE

                      The Save Your Skin Foundation was created by family, friends, and colleagues of Founder Kathy Barnard. Kathy is currently fighting her own battle with melanoma. The Foundation started with the dream of Kathy's sister Rose. One day as Rose was running through the beautiful trails of North Vancouver, she knew it was time to take action. The family had been through a stressful few years trying to find information on melanoma treatments and research and discovered that there was not much current information available.

                      Save Your Skin wants to change that. Our immediate goal is to raise overall awareness of melanoma and non-melanoma skin cancers. We are also committed to providing melanoma patients with access to information about available treatment options, including hard-to-find trial options. Most treatments are still in the experimental stages but are having great results.

                      Our hope is that other families don’t have to go through what Kathy and her family did. We are determined to raise awareness of this disease and to raise funds to support on-going research and treatment initiatives.

                      Objectives

                      – to provide financial assistance for education, awareness, and treatment
                      – to promote education and awareness of skin cancer
                      – to raise funds to further research treatment options

                      bcl
                      Participant

                        Hi Christie, I am so sorry to hear this about your husband. Please contact Kathy Barnard at the Save Your Skin Foundation. Kathy is a Canadian stage 4 survivor based in BC who devotes her time to helping others survive. She knows our Canadian system well and will likely know what is available in your area.  (The foundation will also provide financial assistance.)

                         I am early staged and have no personal experience, but I do know Kathy and know she will want to do what she can.

                         

                         

                        http://www.saveyourskin.ca/

                         

                         

                        Melanoma Support

                        Melanoma Support Resources

                         

                         
                             

                        If you would like a hard copy of materials above, please email [email protected]

                        Patient Support

                        For those living with cancer, support can be vital in the healing process. The Save Your Skin Foundation is committed to providing that support through our online chat forum and/or monthly meetings to those living with Melanoma, their families and loved ones. Melanoma Support Groups The following are melanoma support groups held throughout Canada:

                        Vancouver Kathy [email protected]
                        Kelowna Lida [email protected]
                        Edmonton Tanny [email protected]
                        Winnipeg Linda [email protected]

                        For a list of support groups in the United States, visit AIM at Melanoma http://www.aimatmelanoma.org If you would like to start a Melanoma support group in your area, please email: [email protected]

                        Financial Assistance

                        For Financial Assistance, please contact [email protected]

                        Hope Air Is a charitable organization that provides over 2,400 Flights per year. Guided by a volunteer Board of Directors, managed by a dedicated staff and utilizing the skills of many volunteers, Hope Air is committed to a single goal of Getting Canadians to getting better!

                        Canadian Cancer Society financial assistance program The Canadian Cancer Society provides limited, short-term assistance towards cancer-related transportation and accommodation expenses. Also through their partnership with the BC Cancer Agency, they are able to offer access to symptom management drugs.

                        Melanoma Websites and Regional Cancer Agencies

                        http://www.thesmartfoundation.ca

                        http://www.shadefoundation.org

                        http://www.dermweb.com

                        http://www.skinpatientalliance.ca

                        http://www.mpip.org

                        http://www.bccancer.bc.ca

                        http://www.albertacancer.ca

                        http://www.AIMatMelanoma.org

                        http://www.cancercarewest.ie

                         

                         

                         

                         

                        About the Foundation

                        Never Underestimate the Power of ONE

                        Never Underestimate the Power of ONE

                        The Save Your Skin Foundation was created by family, friends, and colleagues of Founder Kathy Barnard. Kathy is currently fighting her own battle with melanoma. The Foundation started with the dream of Kathy's sister Rose. One day as Rose was running through the beautiful trails of North Vancouver, she knew it was time to take action. The family had been through a stressful few years trying to find information on melanoma treatments and research and discovered that there was not much current information available.

                        Save Your Skin wants to change that. Our immediate goal is to raise overall awareness of melanoma and non-melanoma skin cancers. We are also committed to providing melanoma patients with access to information about available treatment options, including hard-to-find trial options. Most treatments are still in the experimental stages but are having great results.

                        Our hope is that other families don’t have to go through what Kathy and her family did. We are determined to raise awareness of this disease and to raise funds to support on-going research and treatment initiatives.

                        Objectives

                        – to provide financial assistance for education, awareness, and treatment
                        – to promote education and awareness of skin cancer
                        – to raise funds to further research treatment options

                        christie
                        Participant

                          When he first got sick I asked about getting him on a trial.  The oncologist told me for $180,000 we could head down to the states and maybe something "might work".  We don't have anywhere near the money for that.  Does anyone know if there is any treatment in Canada that I can suggest?

                          How long can a person live when they are just "keeping him comfortable"?  I hate to see the suffering…I am at a loss of what to do.

                          christie
                          Participant

                            When he first got sick I asked about getting him on a trial.  The oncologist told me for $180,000 we could head down to the states and maybe something "might work".  We don't have anywhere near the money for that.  Does anyone know if there is any treatment in Canada that I can suggest?

                            How long can a person live when they are just "keeping him comfortable"?  I hate to see the suffering…I am at a loss of what to do.

                          BonnieLea
                          Participant

                            I am based in Ontario and yes Go to Princess Margaret in Toronto.  I believe also that Edmonton have a great melanoma doctor. 

                             

                            We have good treatment, just that some of the drugs available to patients in the US are not approved by our Health Canada.  We also have a Melanoma foundation based here, in Oakville, and it services all of Canada.  If you conttact Annette Cyr .    and I will try to get that info.

                             

                            Linda (BC) my brain is not working right today, I am unable to access that link, can you?  Thanls 

                            Bonnie Lea

                            BonnieLea
                            Participant

                              I am based in Ontario and yes Go to Princess Margaret in Toronto.  I believe also that Edmonton have a great melanoma doctor. 

                               

                              We have good treatment, just that some of the drugs available to patients in the US are not approved by our Health Canada.  We also have a Melanoma foundation based here, in Oakville, and it services all of Canada.  If you conttact Annette Cyr .    and I will try to get that info.

                               

                              Linda (BC) my brain is not working right today, I am unable to access that link, can you?  Thanls 

                              Bonnie Lea

                              BonnieLea
                              Participant

                                I am based in Ontario and yes Go to Princess Margaret in Toronto.  I believe also that Edmonton have a great melanoma doctor. 

                                 

                                We have good treatment, just that some of the drugs available to patients in the US are not approved by our Health Canada.  We also have a Melanoma foundation based here, in Oakville, and it services all of Canada.  If you conttact Annette Cyr .    and I will try to get that info.

                                 

                                Linda (BC) my brain is not working right today, I am unable to access that link, can you?  Thanls 

                                Bonnie Lea

                                bcl
                                Participant

                                  Hi Christie,  Bonnie Lea is referring to the Melanoma Network of Canada and they can be reached here..

                                   

                                  http://melanomanetwork.ca/page.php?page=11

                                  bcl
                                  Participant

                                    Hi Christie,  Bonnie Lea is referring to the Melanoma Network of Canada and they can be reached here..

                                     

                                    http://melanomanetwork.ca/page.php?page=11

                                      christie
                                      Participant

                                         I made an appointment with his doctor for Tuesday and will go in full of information and questions.  I think if I push things they might see there is more that can be done.

                                        Thank you for all your help!

                                        christie
                                        Participant

                                           I made an appointment with his doctor for Tuesday and will go in full of information and questions.  I think if I push things they might see there is more that can be done.

                                          Thank you for all your help!

                                          christie
                                          Participant

                                             I made an appointment with his doctor for Tuesday and will go in full of information and questions.  I think if I push things they might see there is more that can be done.

                                            Thank you for all your help!

                                          bcl
                                          Participant

                                            Hi Christie,  Bonnie Lea is referring to the Melanoma Network of Canada and they can be reached here..

                                             

                                            http://melanomanetwork.ca/page.php?page=11

                                            ValJaneMB
                                            Participant

                                              Hi.  I have stage 4 melanoma and also live in Winnipeg, MB.  I go to Dr. Ralph Wong at the Cancer Care Clinic in the Health Sciences Center.  Dr. Wong is an excellent, caring Oncologist that specializes in melanoma.  He will do whatever is necessary for his patients.  See if you can get your husband referred to him.  Good luck!  ValJaneMB

                                              ValJaneMB
                                              Participant

                                                Hi.  I have stage 4 melanoma and also live in Winnipeg, MB.  I go to Dr. Ralph Wong at the Cancer Care Clinic in the Health Sciences Center.  Dr. Wong is an excellent, caring Oncologist that specializes in melanoma.  He will do whatever is necessary for his patients.  See if you can get your husband referred to him.  Good luck!  ValJaneMB

                                                ValJaneMB
                                                Participant

                                                  Hi.  I have stage 4 melanoma and also live in Winnipeg, MB.  I go to Dr. Ralph Wong at the Cancer Care Clinic in the Health Sciences Center.  Dr. Wong is an excellent, caring Oncologist that specializes in melanoma.  He will do whatever is necessary for his patients.  See if you can get your husband referred to him.  Good luck!  ValJaneMB

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