Stage IIIa – Update

Forums General Melanoma Community Stage IIIa – Update

  • Post
    sbrooks90
    Participant

      Hi Everyone,

      Just thought id log in and post an update to let you guys know how everything is going. Last time I posted, I had gone through a CLND of the groin after a positive sentinel node was found. CLND resulted in no further evidence of disease. In my last post, I reached out to the community for advice on adjuvant treatment recommendations. Treatments available to me here in Canada were:

      1) Interferon Alpha 2b

      2) Clinical Trial – Ipi vs. Interferon (Randomized study)

      3) Clinical Trial – Vemurafenib vs. Placebo (Randomized study)

      I decided that none of those appealed to me and chose to forgo the standard all together. I did however choose to visit a naturopath and changed my diet as well as add many Vitamins to it. I feel better than ever right now and am living life to the fullest. (took me a good 3 months to recover from the CLND)

      Thank you to everyone on this board who provided me with opinions, I took those into consideration when deciding what treatment path to follow/not follow.

      One thing I will leave for debate….. Here in Canada, we do not do "preventative scanning". As many of you mention on here, you go for 6 month PET/CT Scans etc. Here in Canada, you get scanned ONLY if you are having symptoms of metastatic disease or have palpable lymph nodes. (alot of this has to do with the fact that we have free health care and cannot afford to do that) I have been thinking maybe for peace of mind…. drive 1hr to Buffalo and pay to have a scan done.

       

      Anyway thats my piece, Take care!

       

      Samuel

    Viewing 23 reply threads
    • Replies
        mitchwendy
        Participant

          Can I inquire as to your dietary and vitamin changes? I have been looking into this as well…..

          Congrats on feeling better!!!!!

          mitchwendy
          Participant

            Can I inquire as to your dietary and vitamin changes? I have been looking into this as well…..

            Congrats on feeling better!!!!!

            mitchwendy
            Participant

              Can I inquire as to your dietary and vitamin changes? I have been looking into this as well…..

              Congrats on feeling better!!!!!

              mitchwendy
              Participant

                Can I inquire as to your dietary and vitamin changes? I have been looking into this as well…..

                Congrats on feeling better!!!!!

                  sbrooks90
                  Participant

                    To be honest, just eating well overall (less junk more good foods) has helped me in feeling better. As for the vitamins –

                    1) Vitamin C (3000mg/day)

                    2) Vitamin D (3000 UI/day)

                    3) Fish Oil

                    4) Garlic Suppliments

                    5) Green Tea

                    You hear a lot of claims about these being "Cancer Fighting Agents" Im not sure if I believe these will "combat cancer" but for overall wellbeing…. they sure do help. I have noticed a difference.

                    Samuel

                    sbrooks90
                    Participant

                      To be honest, just eating well overall (less junk more good foods) has helped me in feeling better. As for the vitamins –

                      1) Vitamin C (3000mg/day)

                      2) Vitamin D (3000 UI/day)

                      3) Fish Oil

                      4) Garlic Suppliments

                      5) Green Tea

                      You hear a lot of claims about these being "Cancer Fighting Agents" Im not sure if I believe these will "combat cancer" but for overall wellbeing…. they sure do help. I have noticed a difference.

                      Samuel

                      sbrooks90
                      Participant

                        To be honest, just eating well overall (less junk more good foods) has helped me in feeling better. As for the vitamins –

                        1) Vitamin C (3000mg/day)

                        2) Vitamin D (3000 UI/day)

                        3) Fish Oil

                        4) Garlic Suppliments

                        5) Green Tea

                        You hear a lot of claims about these being "Cancer Fighting Agents" Im not sure if I believe these will "combat cancer" but for overall wellbeing…. they sure do help. I have noticed a difference.

                        Samuel

                      mitchwendy
                      Participant

                        Can I inquire as to your dietary and vitamin changes? I have been looking into this as well…..

                        Congrats on feeling better!!!!!

                        mitchwendy
                        Participant

                          Can I inquire as to your dietary and vitamin changes? I have been looking into this as well…..

                          Congrats on feeling better!!!!!

                          JC
                          Participant

                            One of the few vitamin supplements proved worthy is vitamin D,

                            JC
                            Participant

                              One of the few vitamin supplements proved worthy is vitamin D,

                              JC
                              Participant

                                One of the few vitamin supplements proved worthy is vitamin D,

                                katie1
                                Participant

                                  Regular scans are done in Canada.  It may depend on where you are located and the views of your doctor.  It is true that in the past some doctors felt nothing was gained by scanning routinely as there really wasn't much to offer patients in the way of treatment.  This is nolonger true.  Finding recurrences early is important because there are now treatments that provide durable responses. At our centre, scans are done (for Stage 111 patients) every 3-4 months or more frequently as warranted by symptoms.

                                    sbrooks90
                                    Participant

                                      Interesting… I was told otherwise. I am in Ontario and would like to know where these centers are located.

                                       

                                      sbrooks90
                                      Participant

                                        Interesting… I was told otherwise. I am in Ontario and would like to know where these centers are located.

                                         

                                        sbrooks90
                                        Participant

                                          Interesting… I was told otherwise. I am in Ontario and would like to know where these centers are located.

                                           

                                        katie1
                                        Participant

                                          Regular scans are done in Canada.  It may depend on where you are located and the views of your doctor.  It is true that in the past some doctors felt nothing was gained by scanning routinely as there really wasn't much to offer patients in the way of treatment.  This is nolonger true.  Finding recurrences early is important because there are now treatments that provide durable responses. At our centre, scans are done (for Stage 111 patients) every 3-4 months or more frequently as warranted by symptoms.

                                          katie1
                                          Participant

                                            Regular scans are done in Canada.  It may depend on where you are located and the views of your doctor.  It is true that in the past some doctors felt nothing was gained by scanning routinely as there really wasn't much to offer patients in the way of treatment.  This is nolonger true.  Finding recurrences early is important because there are now treatments that provide durable responses. At our centre, scans are done (for Stage 111 patients) every 3-4 months or more frequently as warranted by symptoms.

                                            JoshF
                                            Participant

                                              Glad to hear you're well my friend…. was wondering if you went down trial path, Check in and keep us up to date. Be well!!!

                                               

                                              Josh

                                              JoshF
                                              Participant

                                                Glad to hear you're well my friend…. was wondering if you went down trial path, Check in and keep us up to date. Be well!!!

                                                 

                                                Josh

                                                JoshF
                                                Participant

                                                  Glad to hear you're well my friend…. was wondering if you went down trial path, Check in and keep us up to date. Be well!!!

                                                   

                                                  Josh

                                                  POW
                                                  Participant

                                                    Hi, Samuel-

                                                    Thanks for the update. I've been wondering what you finally decided to do and how you were feellng. It sounds like you're doing really well. Good for you! I also think that focusing on a healthful diet plus a few extra "kickers" for the immune system is a great idea. That's probably the best thing you could do for yourself right now.

                                                    I do think that it is important for you to ge CT scans on a regular basis. Two or three times a year for the first 2 or 3 years and then once or twice a year for the next couple of years. I find it hard to believe that the Canadian health care system won't pay for that. I suggest you post a message about follow-up scans on the Melanoma International Foundation forum ( http://forum.melanomainternational.org/mif/ ). They have a lot of Canadian members. 

                                                    If you do have to pay for it out of pocket, read the Consumer Reports article on how much CT scans cost (http://www.consumerreports.org/cro/magazine/2012/07/that-ct-scan-costs-how-much/index.htm ). Most of the article talks about American health insurance which won't apply to you. But check out the part near the end of the article that talks about   FairHealthConsumer.org and  HealthcareBlueBook.com . According to them, you should be able to get a CT scan with and without contrast for about $300. You would 2 scans (chest and abdomen) each visit.

                                                    You're doing great! Just keep doing what you are doing and continue to enjoy your life. May you never see melanoma again!

                                                    POW
                                                    Participant

                                                      Hi, Samuel-

                                                      Thanks for the update. I've been wondering what you finally decided to do and how you were feellng. It sounds like you're doing really well. Good for you! I also think that focusing on a healthful diet plus a few extra "kickers" for the immune system is a great idea. That's probably the best thing you could do for yourself right now.

                                                      I do think that it is important for you to ge CT scans on a regular basis. Two or three times a year for the first 2 or 3 years and then once or twice a year for the next couple of years. I find it hard to believe that the Canadian health care system won't pay for that. I suggest you post a message about follow-up scans on the Melanoma International Foundation forum ( http://forum.melanomainternational.org/mif/ ). They have a lot of Canadian members. 

                                                      If you do have to pay for it out of pocket, read the Consumer Reports article on how much CT scans cost (http://www.consumerreports.org/cro/magazine/2012/07/that-ct-scan-costs-how-much/index.htm ). Most of the article talks about American health insurance which won't apply to you. But check out the part near the end of the article that talks about   FairHealthConsumer.org and  HealthcareBlueBook.com . According to them, you should be able to get a CT scan with and without contrast for about $300. You would 2 scans (chest and abdomen) each visit.

                                                      You're doing great! Just keep doing what you are doing and continue to enjoy your life. May you never see melanoma again!

                                                      POW
                                                      Participant

                                                        Hi, Samuel-

                                                        Thanks for the update. I've been wondering what you finally decided to do and how you were feellng. It sounds like you're doing really well. Good for you! I also think that focusing on a healthful diet plus a few extra "kickers" for the immune system is a great idea. That's probably the best thing you could do for yourself right now.

                                                        I do think that it is important for you to ge CT scans on a regular basis. Two or three times a year for the first 2 or 3 years and then once or twice a year for the next couple of years. I find it hard to believe that the Canadian health care system won't pay for that. I suggest you post a message about follow-up scans on the Melanoma International Foundation forum ( http://forum.melanomainternational.org/mif/ ). They have a lot of Canadian members. 

                                                        If you do have to pay for it out of pocket, read the Consumer Reports article on how much CT scans cost (http://www.consumerreports.org/cro/magazine/2012/07/that-ct-scan-costs-how-much/index.htm ). Most of the article talks about American health insurance which won't apply to you. But check out the part near the end of the article that talks about   FairHealthConsumer.org and  HealthcareBlueBook.com . According to them, you should be able to get a CT scan with and without contrast for about $300. You would 2 scans (chest and abdomen) each visit.

                                                        You're doing great! Just keep doing what you are doing and continue to enjoy your life. May you never see melanoma again!

                                                        Momrn5
                                                        Participant

                                                          Hi Sbrooks. Glad to see your post.  We were diagnosed close together I think.  I had inguinal nodes removed which were clear after a positive sentinel node.  I too have chosen to watch and wait.  My MD at University of Michigan has ordered a brain MRI and full body CT scan for me in a couple of weeks.  He stated if it spread, we would want to know because of all the treatments available now.  He said if scans OK….another at 2.5 years and one at 5 years, if I am symptomatic. That is it.  Seems like everyone has a different opinion about how many scans to get, but I am comfortable with the schedule he gave me.  Might be good for you to get periodic scans.  As far as the vitamins and supplements go, I have done the same thing.  Check out turmeric too, there are some promising studies in relation to that spice and I have seen that others on this site take it as a supplement.  Good Luck!  

                                                            Momrn5
                                                            Participant

                                                              Asymptomatic.  Autocorrect is at it again!

                                                              mitchwendy
                                                              Participant

                                                                I already take Vit D as I was diagnosed last year as deficient there…

                                                                How about Tumeric? I have heard that is supposed to help…..

                                                                mitchwendy
                                                                Participant

                                                                  I already take Vit D as I was diagnosed last year as deficient there…

                                                                  How about Tumeric? I have heard that is supposed to help…..

                                                                  mitchwendy
                                                                  Participant

                                                                    I already take Vit D as I was diagnosed last year as deficient there…

                                                                    How about Tumeric? I have heard that is supposed to help…..

                                                                    Momrn5
                                                                    Participant

                                                                      Asymptomatic.  Autocorrect is at it again!

                                                                      Momrn5
                                                                      Participant

                                                                        Asymptomatic.  Autocorrect is at it again!

                                                                      Momrn5
                                                                      Participant

                                                                        Hi Sbrooks. Glad to see your post.  We were diagnosed close together I think.  I had inguinal nodes removed which were clear after a positive sentinel node.  I too have chosen to watch and wait.  My MD at University of Michigan has ordered a brain MRI and full body CT scan for me in a couple of weeks.  He stated if it spread, we would want to know because of all the treatments available now.  He said if scans OK….another at 2.5 years and one at 5 years, if I am symptomatic. That is it.  Seems like everyone has a different opinion about how many scans to get, but I am comfortable with the schedule he gave me.  Might be good for you to get periodic scans.  As far as the vitamins and supplements go, I have done the same thing.  Check out turmeric too, there are some promising studies in relation to that spice and I have seen that others on this site take it as a supplement.  Good Luck!  

                                                                        Momrn5
                                                                        Participant

                                                                          Hi Sbrooks. Glad to see your post.  We were diagnosed close together I think.  I had inguinal nodes removed which were clear after a positive sentinel node.  I too have chosen to watch and wait.  My MD at University of Michigan has ordered a brain MRI and full body CT scan for me in a couple of weeks.  He stated if it spread, we would want to know because of all the treatments available now.  He said if scans OK….another at 2.5 years and one at 5 years, if I am symptomatic. That is it.  Seems like everyone has a different opinion about how many scans to get, but I am comfortable with the schedule he gave me.  Might be good for you to get periodic scans.  As far as the vitamins and supplements go, I have done the same thing.  Check out turmeric too, there are some promising studies in relation to that spice and I have seen that others on this site take it as a supplement.  Good Luck!  

                                                                          Marialuv
                                                                          Guest

                                                                            Hi dear,
                                                                            my name is Maria am a young girl, it give's me a great pleasure to write you when i saw your profile i became interested in you, If you will have the desire with me so that we can get to know each other and see what happens, i will be very happy if you can write me back through my email address (maria23sankor@yahoo.com) to enable me send you some of my pictures and also introduce my self fully to you.
                                                                            thanks so much and i will be hoping to hear from you soon.
                                                                            Yours new friend, Maria.

                                                                            Marialuv
                                                                            Guest

                                                                              Hi dear,
                                                                              my name is Maria am a young girl, it give's me a great pleasure to write you when i saw your profile i became interested in you, If you will have the desire with me so that we can get to know each other and see what happens, i will be very happy if you can write me back through my email address (maria23sankor@yahoo.com) to enable me send you some of my pictures and also introduce my self fully to you.
                                                                              thanks so much and i will be hoping to hear from you soon.
                                                                              Yours new friend, Maria.

                                                                              Marialuv
                                                                              Guest

                                                                                Hi dear,
                                                                                my name is Maria am a young girl, it give's me a great pleasure to write you when i saw your profile i became interested in you, If you will have the desire with me so that we can get to know each other and see what happens, i will be very happy if you can write me back through my email address (maria23sankor@yahoo.com) to enable me send you some of my pictures and also introduce my self fully to you.
                                                                                thanks so much and i will be hoping to hear from you soon.
                                                                                Yours new friend, Maria.

                                                                                  sbrooks90
                                                                                  Participant

                                                                                    Yeah no problem….. why dont I send $50,000 to your private bank account in Nigeria as well ๐Ÿ˜‰

                                                                                    sbrooks90
                                                                                    Participant

                                                                                      Yeah no problem….. why dont I send $50,000 to your private bank account in Nigeria as well ๐Ÿ˜‰

                                                                                      sbrooks90
                                                                                      Participant

                                                                                        Yeah no problem….. why dont I send $50,000 to your private bank account in Nigeria as well ๐Ÿ˜‰

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