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feeling pink fatigue

Forums General Melanoma Community feeling pink fatigue

  • Post
    RMcLegal
    Participant

      I recently read a discussion board post by a woman, newly diagnosed with melanoma, who wrote that several of her friends had responded "at least you don't have breast cancer".  This inspired me to write a new blog post, mostly tongue-in-cheek, about melanoma awareness unfairness.   http://www.hotelmelanoma.blogspot.com.  Does anyone else sometimes suffer from pink fatigue?  Best wishes to all.

      I recently read a discussion board post by a woman, newly diagnosed with melanoma, who wrote that several of her friends had responded "at least you don't have breast cancer".  This inspired me to write a new blog post, mostly tongue-in-cheek, about melanoma awareness unfairness.   http://www.hotelmelanoma.blogspot.com.  Does anyone else sometimes suffer from pink fatigue?  Best wishes to all.

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    • Replies
        washoegal
        Participant

          I suffer from pink fatigue quite often.  I can't believe someone actually said that !  I should because when I was diagnosed my best friend mostly prattled on and on about her breast cancer…..which was by the way stage 1.  I love the term "pink fatigue".

          Mary

          Stage

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          washoegal
          Participant

            I suffer from pink fatigue quite often.  I can't believe someone actually said that !  I should because when I was diagnosed my best friend mostly prattled on and on about her breast cancer…..which was by the way stage 1.  I love the term "pink fatigue".

            Mary

            Stage

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            ShariC
            Participant

              I love the term awareness unfairness!  I was made aware of my situation because of a lump in my armpit (the lymph node all swelled with mel) and I was really scared it would be breast cancer.  When my doctor called to give me my diagnosis…she said "I wish I were telling you its breast cancer.  That would be better.  You have advanced melanoma".  Nice.  I think I started this journey with pink fatigue!

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              ShariC
              Participant

                I love the term awareness unfairness!  I was made aware of my situation because of a lump in my armpit (the lymph node all swelled with mel) and I was really scared it would be breast cancer.  When my doctor called to give me my diagnosis…she said "I wish I were telling you its breast cancer.  That would be better.  You have advanced melanoma".  Nice.  I think I started this journey with pink fatigue!

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                bcl
                Participant

                  I've been peeved at pink for a long time now, particularly since becoming aware the indoor tanning industry is cosying up..

                  https://smarttan.com/store/-p-192.html?osCsid=fbyeozrpmesp

                  another pink campaign…

                  http://d-featbreastcancer.com/index.htm

                  Canadian salon – tanning minutes = BC donation

                  http://www.fabutan.com/about-fabutan/press-releases/20091123-ray-of-hope.aspx

                  On Jan 20, Smart Tan's Vice President states here https://smarttan.com/blog/index.php/category/headlines/page/10/ that "sunshine is the only source of vitamin D"

                  The VitD sales pitch is outlined below  (Don't get me wrong, I am interested in VitD – I just don't want to get it from a tanning bed!)

                   

                  https://smarttan.com/conference/detail.php

                  "SMART TAN DOWNTOWN: BIGGER, BADDER, SMARTER"
                  SMART TAN'S 2010 INDOOR TANNING INDUSTRY CONVENTION & TRADE SHOW
                  Downtown Nashville Renaissance Hotel and the Nashville Convention Center
                  Oct. 22-24, 2010

                   

                   

                  TECHNICAL
                  2011: The Year of Sunlight, Vitamin D and Beyond
                  Dr. Marc Sorenson, The Sunlight Institute
                  Saturday, 10:00 – 10:50

                  The perception of sunlight as essential to human life is changing, driven by a storm of consistent pro-sun, pro-vitamin D research that is making it impossible (outside of dermatology and chemical sunscreen pharmaceutical circles) to ignore the fact that humans need regular sun exposure to function properly. Independent sunlight advocate Dr. Marc Sorenson, author of "Vitamin D3 and Solar Power for Optimal Health" founded The Sunlight Institute in 2010 because sunshine is free, no one sells it and it has no marketing team. Yet the benefits of regular sun exposure – highlighted by, but not limited to, vitamin D production – are still among the most underappreciated of all preventive health measures available today. Sorenson, a published health education expert and founder of one of the nation's most successful fitness institutes in Utah, has made being a champion of sun exposure one of his primary missions. He's joined by Smart Tan's Joseph Levy review why research in the past year has painted a sunnier picture for UV and what role indoor tanning facilities can play in being part of the pro-sun movement.

                   

                   

                   

                  SUNDAY, OCT. 24

                  New 2011 'D-Angel' Vitamin D Action Empowerment Certification Training
                  Joseph Levy International Smart Tan Network
                  Sunday, 9:00 – 11:00 am

                  Widely regarded in 2010 as the most powerful grassroots market growth and employee empowerment program Smart Tan has ever created, the "D-Angel" certification program is an emotionally charged multi-media presentation that makes your blood boil — empowering indoor tanning employees to become your most effective tanning ambassadors and to use the power of social networking to change your community's perceptions about UV exposure and tanning. And we've updated the course with even more powerful material for 2011. This class teaches you how the vitamin D message has vindicated Smart Tanning and why it's important for your employees to share what they know with their friends and your community. Most importantly, the course gives your staff simple tools and the desire to spread the good word about UV light, turning the tanning community's 160,000 employees into the most effective "army" delivering our core message: that UV exposure is natural and intended, and that indoor tanning is part of the solution – not part of the problem. Those who complete the class receive weekly updates from the D-Angel staff that are easily forwarded to friends via social networks so their memory of the message stays alive all year. There is a separate fee for this bonus course.

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                  bcl
                  Participant

                    I've been peeved at pink for a long time now, particularly since becoming aware the indoor tanning industry is cosying up..

                    https://smarttan.com/store/-p-192.html?osCsid=fbyeozrpmesp

                    another pink campaign…

                    http://d-featbreastcancer.com/index.htm

                    Canadian salon – tanning minutes = BC donation

                    http://www.fabutan.com/about-fabutan/press-releases/20091123-ray-of-hope.aspx

                    On Jan 20, Smart Tan's Vice President states here https://smarttan.com/blog/index.php/category/headlines/page/10/ that "sunshine is the only source of vitamin D"

                    The VitD sales pitch is outlined below  (Don't get me wrong, I am interested in VitD – I just don't want to get it from a tanning bed!)

                     

                    https://smarttan.com/conference/detail.php

                    "SMART TAN DOWNTOWN: BIGGER, BADDER, SMARTER"
                    SMART TAN'S 2010 INDOOR TANNING INDUSTRY CONVENTION & TRADE SHOW
                    Downtown Nashville Renaissance Hotel and the Nashville Convention Center
                    Oct. 22-24, 2010

                     

                     

                    TECHNICAL
                    2011: The Year of Sunlight, Vitamin D and Beyond
                    Dr. Marc Sorenson, The Sunlight Institute
                    Saturday, 10:00 – 10:50

                    The perception of sunlight as essential to human life is changing, driven by a storm of consistent pro-sun, pro-vitamin D research that is making it impossible (outside of dermatology and chemical sunscreen pharmaceutical circles) to ignore the fact that humans need regular sun exposure to function properly. Independent sunlight advocate Dr. Marc Sorenson, author of "Vitamin D3 and Solar Power for Optimal Health" founded The Sunlight Institute in 2010 because sunshine is free, no one sells it and it has no marketing team. Yet the benefits of regular sun exposure – highlighted by, but not limited to, vitamin D production – are still among the most underappreciated of all preventive health measures available today. Sorenson, a published health education expert and founder of one of the nation's most successful fitness institutes in Utah, has made being a champion of sun exposure one of his primary missions. He's joined by Smart Tan's Joseph Levy review why research in the past year has painted a sunnier picture for UV and what role indoor tanning facilities can play in being part of the pro-sun movement.

                     

                     

                     

                    SUNDAY, OCT. 24

                    New 2011 'D-Angel' Vitamin D Action Empowerment Certification Training
                    Joseph Levy International Smart Tan Network
                    Sunday, 9:00 – 11:00 am

                    Widely regarded in 2010 as the most powerful grassroots market growth and employee empowerment program Smart Tan has ever created, the "D-Angel" certification program is an emotionally charged multi-media presentation that makes your blood boil — empowering indoor tanning employees to become your most effective tanning ambassadors and to use the power of social networking to change your community's perceptions about UV exposure and tanning. And we've updated the course with even more powerful material for 2011. This class teaches you how the vitamin D message has vindicated Smart Tanning and why it's important for your employees to share what they know with their friends and your community. Most importantly, the course gives your staff simple tools and the desire to spread the good word about UV light, turning the tanning community's 160,000 employees into the most effective "army" delivering our core message: that UV exposure is natural and intended, and that indoor tanning is part of the solution – not part of the problem. Those who complete the class receive weekly updates from the D-Angel staff that are easily forwarded to friends via social networks so their memory of the message stays alive all year. There is a separate fee for this bonus course.

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                    lhaley
                    Participant

                      Rich,

                      I have to tell you that I love your blog and how you've kept it light! I read it last week in the wee hours of the night.  I've had pink fatigue since the beginning. My melanoma originated and recurred on the breast.  You have no idea of what it's been like explaining that one to the pink world…….   I sat in the derms office as he's excising this huge lump that had come up over night. I'm silently praying that it's breast cancer and not melanoma. That's saying a lot since in 06 my mom had just passed 6 years earlier from…… you got it, breast cancer.

                      So here I am now having issues with my other breast and have had to go through rounds of tests. They think it's benign but aren't sure. I had lymph nodes removed a few months ago and I could be having a partially blocked lymphatic path. BUT, there I was in a radiology center and everything around me was pink and all the radiologist wanted to talk about was possible breast cancer.  Yes, I was wearing a pink gown. Not saying he shouldn't have had this discussion with me but here I am a stage IV mel patient with multiple recurrances and he's not even thinking of a recurrance…. hmmmmm  What's interesting is he is sending me to my dermatologist to have some punch biopsies of the "pink' areas but his suspicions are possible inflammatory breast cancer. 

                      The only pink I have bought in many years is for my precious granddaughter. Little girls should wear pink!

                      Linda

                      stage IV since 06

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                        dawn dion
                        Participant

                          Linda I have to say I am right there with you – I lost my mother in 08 to Breast Cancer and I have had the same kind of reactions.  My other favorite was my mother in law comparing her tiny basil cell cancer that she had removed to Melanoma, and telling me "be glad we only had to deal with skin cancer"   I laughed insanely – I  replied to her – I only wish I had basil cell cancer – you have no clue what you are talking about.   Or my so called "friends" telling me that I need to get serious about this and stop messing around with these trials and get aggressive.   People are so ignorant.  Believe me I was ignorant to it also but  that is what makes me so thankful for this board and certain bloggers because until you have walked in these shoes it is impossible to now just how messed up this disease really is.

                          Keep the info coming guys because I have learned more here in the last three weeks than I have in the many months I have been fighting this.  The Drs. sure don't tell you unless you back them into a corner and ask them point blank – and you certainly lean what to ask here.

                          Thanks again

                          Hugs and Smiles

                          Dawn (Stage IV – Florida)

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                          dawn dion
                          Participant

                            Linda I have to say I am right there with you – I lost my mother in 08 to Breast Cancer and I have had the same kind of reactions.  My other favorite was my mother in law comparing her tiny basil cell cancer that she had removed to Melanoma, and telling me "be glad we only had to deal with skin cancer"   I laughed insanely – I  replied to her – I only wish I had basil cell cancer – you have no clue what you are talking about.   Or my so called "friends" telling me that I need to get serious about this and stop messing around with these trials and get aggressive.   People are so ignorant.  Believe me I was ignorant to it also but  that is what makes me so thankful for this board and certain bloggers because until you have walked in these shoes it is impossible to now just how messed up this disease really is.

                            Keep the info coming guys because I have learned more here in the last three weeks than I have in the many months I have been fighting this.  The Drs. sure don't tell you unless you back them into a corner and ask them point blank – and you certainly lean what to ask here.

                            Thanks again

                            Hugs and Smiles

                            Dawn (Stage IV – Florida)

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                          lhaley
                          Participant

                            Rich,

                            I have to tell you that I love your blog and how you've kept it light! I read it last week in the wee hours of the night.  I've had pink fatigue since the beginning. My melanoma originated and recurred on the breast.  You have no idea of what it's been like explaining that one to the pink world…….   I sat in the derms office as he's excising this huge lump that had come up over night. I'm silently praying that it's breast cancer and not melanoma. That's saying a lot since in 06 my mom had just passed 6 years earlier from…… you got it, breast cancer.

                            So here I am now having issues with my other breast and have had to go through rounds of tests. They think it's benign but aren't sure. I had lymph nodes removed a few months ago and I could be having a partially blocked lymphatic path. BUT, there I was in a radiology center and everything around me was pink and all the radiologist wanted to talk about was possible breast cancer.  Yes, I was wearing a pink gown. Not saying he shouldn't have had this discussion with me but here I am a stage IV mel patient with multiple recurrances and he's not even thinking of a recurrance…. hmmmmm  What's interesting is he is sending me to my dermatologist to have some punch biopsies of the "pink' areas but his suspicions are possible inflammatory breast cancer. 

                            The only pink I have bought in many years is for my precious granddaughter. Little girls should wear pink!

                            Linda

                            stage IV since 06

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                            DebbieH
                            Participant

                              I LOVE your blog – especially Hotel Melanoma – ha!

                              I had a similar experience to someone who posted above.  It was actually a lump in my breast that took me to a doctor to see what was going on.  My very thin stage 1A "lucky you caught it so early" melanoma had been six years before and I never thought it would return.  I believed the doctors who did not say it's unlikely to return but told me it WOULD not return, ah well.  Anyway, when these new doctors found enlarged nodes on the same side as the breast lump I asked them if they thought it might be breast cancer.  They said we hope it is breast cancer.  I was just shocked at this and asked what they meant.  They said "it would be so much better than if it was the melanoma back again because we have a lot more treatments for breast cancer".  That sure put things in perspective for me.  Anyway, the breast lump turned out to be nothing but the lymphnodes were melanoma.

                              When I went for a second opinion that doctor told me there aren't enough clinical trials for melanoma because everything was going for breast cancer – very frustrating, and on top of that, you dare not say anything about this or you'll be seen as a terrible person.  This is the only place I feel I can vent on this politically touchy subject.  I used to be quite fond of the color pink but these days I won't buy anything pink for any reason.  Ah well….

                              DebbieH, stage IIIC, NED 9 1/2 years after interferon and no scans

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                                NicOz
                                Participant

                                  I don't buy anything with a pink ribbon either, even though some of the things were among my favourite brands to purchase. One darling shop assistance felt the need to point out to me that the water I was purchasing in favour of one with a pink ribbon on it, was more expensive AND for a good cause. I told her I'd rather pay double for one without a pink ribbon.

                                  Maybe I wouldn't be so annoyed if they didn't go on, ad nauseum, about it being for "awareness". Who HASN'T heard of breast cancer?! I wonder how often they have to hear ignorant fools say "It's ONLY breast cancer- Just cut it out and you'll be fine!" :) In fact, I think that may become my standard response for all cancers "Chop it off- you'll be right!"

                                  I remember vividly my doc said "Unfortunately you have melanoma metastases… I was really hoping it would be lymphoma"

                                  My response? "Me too"

                                  But meh- what is, is. Pink was never my colour, anyway. We need to market to the goths and the emo's, maybe?…

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                                  NicOz
                                  Participant

                                    I don't buy anything with a pink ribbon either, even though some of the things were among my favourite brands to purchase. One darling shop assistance felt the need to point out to me that the water I was purchasing in favour of one with a pink ribbon on it, was more expensive AND for a good cause. I told her I'd rather pay double for one without a pink ribbon.

                                    Maybe I wouldn't be so annoyed if they didn't go on, ad nauseum, about it being for "awareness". Who HASN'T heard of breast cancer?! I wonder how often they have to hear ignorant fools say "It's ONLY breast cancer- Just cut it out and you'll be fine!" :) In fact, I think that may become my standard response for all cancers "Chop it off- you'll be right!"

                                    I remember vividly my doc said "Unfortunately you have melanoma metastases… I was really hoping it would be lymphoma"

                                    My response? "Me too"

                                    But meh- what is, is. Pink was never my colour, anyway. We need to market to the goths and the emo's, maybe?…

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                                  DebbieH
                                  Participant

                                    I LOVE your blog – especially Hotel Melanoma – ha!

                                    I had a similar experience to someone who posted above.  It was actually a lump in my breast that took me to a doctor to see what was going on.  My very thin stage 1A "lucky you caught it so early" melanoma had been six years before and I never thought it would return.  I believed the doctors who did not say it's unlikely to return but told me it WOULD not return, ah well.  Anyway, when these new doctors found enlarged nodes on the same side as the breast lump I asked them if they thought it might be breast cancer.  They said we hope it is breast cancer.  I was just shocked at this and asked what they meant.  They said "it would be so much better than if it was the melanoma back again because we have a lot more treatments for breast cancer".  That sure put things in perspective for me.  Anyway, the breast lump turned out to be nothing but the lymphnodes were melanoma.

                                    When I went for a second opinion that doctor told me there aren't enough clinical trials for melanoma because everything was going for breast cancer – very frustrating, and on top of that, you dare not say anything about this or you'll be seen as a terrible person.  This is the only place I feel I can vent on this politically touchy subject.  I used to be quite fond of the color pink but these days I won't buy anything pink for any reason.  Ah well….

                                    DebbieH, stage IIIC, NED 9 1/2 years after interferon and no scans

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                                    LynnLuc
                                    Participant

                                      I guess I am sort of having black fatigue…sick of melanoma…with everything and everyone it touches…

                                      I am all about cure…melanoma, for breast cancer, lung cancer and even HIV/AIDS. It is interesting that much of the science to treat melanoma came out of HIV/AIDS research and how not long ago people thought it wasn't worth the money for those "evil homosexuals"…

                                      You are correct tho-there is more pink ribbons on products and services then any other colored ribbon…I want to change the color from black as does many of my friends who have melanoma…when you see a black ribbon you just sort of attach death and dying to it…..=;o)  Lynn

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                                      LynnLuc
                                      Participant

                                        I guess I am sort of having black fatigue…sick of melanoma…with everything and everyone it touches…

                                        I am all about cure…melanoma, for breast cancer, lung cancer and even HIV/AIDS. It is interesting that much of the science to treat melanoma came out of HIV/AIDS research and how not long ago people thought it wasn't worth the money for those "evil homosexuals"…

                                        You are correct tho-there is more pink ribbons on products and services then any other colored ribbon…I want to change the color from black as does many of my friends who have melanoma…when you see a black ribbon you just sort of attach death and dying to it…..=;o)  Lynn

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                                        jag
                                        Participant

                                          Loved the "Hotel Melanoma" lyrics, well done.  

                                          Discriminating against people with cancer based on color is racist.

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                                            bcl
                                            Participant

                                               Uh-huh  (and as per my comments above) – feeding one cancer to fund research&education on another smacks of cannibalism to me.

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                                              NicOz
                                              Participant

                                                Well, we ARE at the bottom of the cancer food chain, hun! :P

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                                                bcl
                                                Participant

                                                  lol Nic   – I think we need to give 'em a bad case of indigestion:)

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                                                  bcl
                                                  Participant

                                                    lol Nic   – I think we need to give 'em a bad case of indigestion:)

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                                                    NicOz
                                                    Participant

                                                      Well, we ARE at the bottom of the cancer food chain, hun! :P

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                                                      bcl
                                                      Participant

                                                         Uh-huh  (and as per my comments above) – feeding one cancer to fund research&education on another smacks of cannibalism to me.

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                                                      jag
                                                      Participant

                                                        Loved the "Hotel Melanoma" lyrics, well done.  

                                                        Discriminating against people with cancer based on color is racist.

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                                                        RMcLegal
                                                        Participant

                                                          Thanks for the kind reviews of the blog, and best wishes to all of you in your battles with this beast.

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                                                          RMcLegal
                                                          Participant

                                                            Thanks for the kind reviews of the blog, and best wishes to all of you in your battles with this beast.

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                                                            washoegal
                                                            Participant

                                                              I so enjoyed reading everyone's thoughts on this.  Mad me mad at times, made me laugh at other times.  But it shows what a great group of fighters we have hear.  Keep it up.  Too bad we are scattered all over the globe, but thank god we have the internet now.

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                                                                KellieSue
                                                                Participant

                                                                  Oh goodness am I ever sick of pink ribbons everywhere!

                                                                  My good friend dealt with breast cancer last year and it runs in her family and I feel for her but even she said she has such a great chance at survival with all the money and research going toward breast cancer.

                                                                  I too shy away from buying anything with the pink ribbon on it, my mom is an Avon rep. so she has it shoved in her face at every turn also.

                                                                  I get so damn sick of people saying, it's just skin cancer and comparing it to the basil cell they had taken off 15 years ago. Ya, so the same thing crazies! Ahh

                                                                  Kellie(from Iowa) Stage IV on B-RAF

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                                                                  KellieSue
                                                                  Participant

                                                                    Oh goodness am I ever sick of pink ribbons everywhere!

                                                                    My good friend dealt with breast cancer last year and it runs in her family and I feel for her but even she said she has such a great chance at survival with all the money and research going toward breast cancer.

                                                                    I too shy away from buying anything with the pink ribbon on it, my mom is an Avon rep. so she has it shoved in her face at every turn also.

                                                                    I get so damn sick of people saying, it's just skin cancer and comparing it to the basil cell they had taken off 15 years ago. Ya, so the same thing crazies! Ahh

                                                                    Kellie(from Iowa) Stage IV on B-RAF

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                                                                  washoegal
                                                                  Participant

                                                                    I so enjoyed reading everyone's thoughts on this.  Mad me mad at times, made me laugh at other times.  But it shows what a great group of fighters we have hear.  Keep it up.  Too bad we are scattered all over the globe, but thank god we have the internet now.

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                                                                    ChrisTheWilsonZoo
                                                                    Participant

                                                                      LOVED your blog entry.  And absolutely love the expression "awareness unfairness"!!!  I'll have to try to remember it – if the chemo brain allows me to, that is. ;-)

                                                                      This is a topic near & dear to my heart ever since my melanoma recurred.  After they biopsied my lymph node, I too heard the words "it would have been better if it had been breast cancer".  Hearing it was melanoma took my breath away.  (I had researched possible diagnoses, and melanoma was dead LAST on my list – after "I DON'T KNOW" and several blank lines!  It had been 17 years since my initial incidence of melanoma, I wasn't expecting it to recur.)

                                                                      Anyway, so TOTALLY over the pink thing.  I used to love wearing pink – for the most part, I've replaced it with any color OTHER than pink.  Just on general principle.  (Especially when visiting the cancer center.)

                                                                      I'd be delighted to see the remaining forms of cancer get even a FRACTION of the attention and sponsorship that breast cancer does.  Unfortunately, a "Save the boobies" campaign is a lot more catchy and immediate than discussing the long term effects of sun exposure.  You would like to think sunscreen manufacturers would be willing to support melanoma awareness.  In fact, any manufacturer that provides some sort of suncreening technology (umbrellas, hats, clothing, etc) would seem to be a logical supporter.

                                                                      I've always wanted to see our own version of the pink ribbon campaign.  Only replace the ribbon so we don't EVER accidentally risk their wrath.  (How about a black umbrella or black hat – or some other random symbol?)    Find our own corporate sponsors, etc. 

                                                                      I believe our awareness month is May – opportunities to raise public awareness/educate people about melanoma:  beautiful spring weather throughout much of the country for outdoor events (with proper sun protection, of course!), automotive racing (NASCAR, Indy500), baseball, school is still in session (educate the kids before they head out for the summer).

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                                                                      ChrisTheWilsonZoo
                                                                      Participant

                                                                        LOVED your blog entry.  And absolutely love the expression "awareness unfairness"!!!  I'll have to try to remember it – if the chemo brain allows me to, that is. ;-)

                                                                        This is a topic near & dear to my heart ever since my melanoma recurred.  After they biopsied my lymph node, I too heard the words "it would have been better if it had been breast cancer".  Hearing it was melanoma took my breath away.  (I had researched possible diagnoses, and melanoma was dead LAST on my list – after "I DON'T KNOW" and several blank lines!  It had been 17 years since my initial incidence of melanoma, I wasn't expecting it to recur.)

                                                                        Anyway, so TOTALLY over the pink thing.  I used to love wearing pink – for the most part, I've replaced it with any color OTHER than pink.  Just on general principle.  (Especially when visiting the cancer center.)

                                                                        I'd be delighted to see the remaining forms of cancer get even a FRACTION of the attention and sponsorship that breast cancer does.  Unfortunately, a "Save the boobies" campaign is a lot more catchy and immediate than discussing the long term effects of sun exposure.  You would like to think sunscreen manufacturers would be willing to support melanoma awareness.  In fact, any manufacturer that provides some sort of suncreening technology (umbrellas, hats, clothing, etc) would seem to be a logical supporter.

                                                                        I've always wanted to see our own version of the pink ribbon campaign.  Only replace the ribbon so we don't EVER accidentally risk their wrath.  (How about a black umbrella or black hat – or some other random symbol?)    Find our own corporate sponsors, etc. 

                                                                        I believe our awareness month is May – opportunities to raise public awareness/educate people about melanoma:  beautiful spring weather throughout much of the country for outdoor events (with proper sun protection, of course!), automotive racing (NASCAR, Indy500), baseball, school is still in session (educate the kids before they head out for the summer).

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                                                                        carol b
                                                                        Participant

                                                                          I have had breast cancer, in 2008 and yes everyone was pink this and pink that. i am so sick of  pink. Not that im saying i dont care about breast cancer patients. Cancer is cancer no matter who has it. But i would love to be able to by a mel shirt or bracelet to be able to let people see what exactly it really is. Most people i meet ask to see it. Well its kinda hard to show metastatic melanoma. Peoople should know the damage that tanning beds can do. Even laying out in the sun is harmful, but people get melanoma where the sun dont shine also. well thats just all my opinions about it that i can think of right now anyway. stage IV metastatic melanoma currently on interleukin2….Carol Bellinger

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                                                                          carol b
                                                                          Participant

                                                                            I have had breast cancer, in 2008 and yes everyone was pink this and pink that. i am so sick of  pink. Not that im saying i dont care about breast cancer patients. Cancer is cancer no matter who has it. But i would love to be able to by a mel shirt or bracelet to be able to let people see what exactly it really is. Most people i meet ask to see it. Well its kinda hard to show metastatic melanoma. Peoople should know the damage that tanning beds can do. Even laying out in the sun is harmful, but people get melanoma where the sun dont shine also. well thats just all my opinions about it that i can think of right now anyway. stage IV metastatic melanoma currently on interleukin2….Carol Bellinger

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                                                                            RMcLegal
                                                                            Participant

                                                                              Folks, I've enjoyed reading all of your replies and your perspectives (particularly those of women who've had breast cancer or were at first suspected of having it) on melanoma awareness unfairness.  It's good to know that I'm not alone in sometimes singing the "it's just skin cancer blues"!  Best wishes to all of you in your battle with our forgotten stepchild disease!  I'd love to buy a melanoma awareness t-shirt or ball cap, but not ones in black.  How about a robin's egg blue, for a unisex and happier color?

                                                                              To psych myself up for at least a couple of roadtrips over the next few weeks for checkups and a scan, I couldn't resist rewriting the lyrics of the Grateful Dead classic "Truckin'" and adding a blog link to a music video of "I Won't Back Down" by Tom Petty & The Heartbreakers.  If you need some road music for your own upcoming trips, check them out at http://www.hotelmelanoma.blogspot.com

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                                                                              RMcLegal
                                                                              Participant

                                                                                Folks, I've enjoyed reading all of your replies and your perspectives (particularly those of women who've had breast cancer or were at first suspected of having it) on melanoma awareness unfairness.  It's good to know that I'm not alone in sometimes singing the "it's just skin cancer blues"!  Best wishes to all of you in your battle with our forgotten stepchild disease!  I'd love to buy a melanoma awareness t-shirt or ball cap, but not ones in black.  How about a robin's egg blue, for a unisex and happier color?

                                                                                To psych myself up for at least a couple of roadtrips over the next few weeks for checkups and a scan, I couldn't resist rewriting the lyrics of the Grateful Dead classic "Truckin'" and adding a blog link to a music video of "I Won't Back Down" by Tom Petty & The Heartbreakers.  If you need some road music for your own upcoming trips, check them out at http://www.hotelmelanoma.blogspot.com

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                                                                                Cynthia C
                                                                                Participant

                                                                                  Thanks for making my day! I now have your blog page in my favorites. Love the dog.

                                                                                  Cynthia C  IIIb, NED 10 years, Castle Rock

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                                                                                    RMcLegal
                                                                                    Participant

                                                                                      Hi Cynthia, glad you enjoyed the blog.  I'm working on another awareness unfairness song, this time to the tune of The Rolling Stones' "Beast of Burden", but it needs some more work before posting.  Stay tuned…. 

                                                                                      10 years is fantastic, I love to hear such stories.  Were you by chance treated at the University of Colorado Cancer Center (not that it's any of my business)?

                                                                                      Take care, Rich

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                                                                                      Cynthia C
                                                                                      Participant

                                                                                        Howdy neighbor!

                                                                                        My initial melanoma experience took place in Southern California. My treatment consisted of diagnosis, wide excision with LN Bx and right groin LN dissection, then just 8 or 9 doses of HI dose IV interferon. You can call me a wimp, I just could not do any more. I had a great and thorough surgeon for which I will always be greatful at a local hospital and I had a local (general) oncologist. No scans were offered! I moved to Colorado about a year later and found a nice (local) oncologist that I really like and trust. I only do CXR and labs yearly. I did finally get a PET scan a couple of years ago which was totally negative! Yes, 10 years later I'm still a little worried, although I continue to enjoy life everyday. If I do end up with a recurrence I will seek a melanoma specialist and ask all of the incredible, wonderful people on this board for advice.

                                                                                        Cynthia C, [email protected]

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                                                                                        Cynthia C
                                                                                        Participant

                                                                                          Howdy neighbor!

                                                                                          My initial melanoma experience took place in Southern California. My treatment consisted of diagnosis, wide excision with LN Bx and right groin LN dissection, then just 8 or 9 doses of HI dose IV interferon. You can call me a wimp, I just could not do any more. I had a great and thorough surgeon for which I will always be greatful at a local hospital and I had a local (general) oncologist. No scans were offered! I moved to Colorado about a year later and found a nice (local) oncologist that I really like and trust. I only do CXR and labs yearly. I did finally get a PET scan a couple of years ago which was totally negative! Yes, 10 years later I'm still a little worried, although I continue to enjoy life everyday. If I do end up with a recurrence I will seek a melanoma specialist and ask all of the incredible, wonderful people on this board for advice.

                                                                                          Cynthia C, [email protected]

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                                                                                          RMcLegal
                                                                                          Participant

                                                                                            Hi Cynthia, glad you enjoyed the blog.  I'm working on another awareness unfairness song, this time to the tune of The Rolling Stones' "Beast of Burden", but it needs some more work before posting.  Stay tuned…. 

                                                                                            10 years is fantastic, I love to hear such stories.  Were you by chance treated at the University of Colorado Cancer Center (not that it's any of my business)?

                                                                                            Take care, Rich

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                                                                                          Cynthia C
                                                                                          Participant

                                                                                            Thanks for making my day! I now have your blog page in my favorites. Love the dog.

                                                                                            Cynthia C  IIIb, NED 10 years, Castle Rock

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                                                                                            RMcLegal
                                                                                            Participant

                                                                                              I'm still suffering from a touch of pink fatigue today, for a couple of reasons.  One, I checked on a fellow fighter's blog this morning (http://www.adventurewithmelanoma.blogspot.com) and Google had placed an ad for a breast cancer charity below her most recent post.  Two, I think that if Yervoy was a breast cancer treatment its approval would've been a much bigger news story and covered by outlets like the NBC Nightly News.  So, I'm working on new lyrics to a couple of more "awareness unfairness" songs, including the Rolling Stones' "Beast of Burden" that I'll be posting on http://www.hotelmelanoma.blogspot.com.

                                                                                              What do you think? 

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                                                                                                CarolA
                                                                                                Participant

                                                                                                  It has been discussed, the lack of celebrity connection that would maybe put a face on melanoma.

                                                                                                  Well, there isn't a lack of it – it just doesn't "connect" or keep going on.   The last name was the keyboard player for Bruce Springsteen.   I think The Boss did some mention of it, but it didn't keep going on.    I can't think of the former NFL coach, whose wife died from melanoma last year–again, a news item, a small statement in the news item.  That's all.   Sam Donaldson is doing well with Stage III, did you know that?   I think Dallas QB Troy Aikman had a melanoma incident.   And to me, when I was first given my biopsy results, I totally freaked out because all I knew of melanoma skin cancer was that Maureen Regan (President's daughter) died from melanoma;  there was a big article in Good Housekeeping about that.   That was not reassuring to me. 

                                                                                                  Lack of celebrity interest or connection, or the number of people whose lives are affected don't total the number that breast cancer touches?    I don't know.   I just wish we could get more coverage through celebrities, since our media world is SO instigated by celebrity news.

                                                                                                  CarolA

                                                                                                  Stage III since 3/05

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                                                                                                  Ranisa
                                                                                                  Participant

                                                                                                    Add Bob Marley to the list.

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                                                                                                    RMcLegal
                                                                                                    Participant

                                                                                                      Any particular Bob Marley favorite?  I'm happy to try to "do a request".

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                                                                                                      Ranisa
                                                                                                      Participant

                                                                                                        I don't even know any of his songs….maybe one, just that he died of melanoma.

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                                                                                                        Ranisa
                                                                                                        Participant

                                                                                                          I don't even know any of his songs….maybe one, just that he died of melanoma.

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                                                                                                          RMcLegal
                                                                                                          Participant

                                                                                                            Any particular Bob Marley favorite?  I'm happy to try to "do a request".

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                                                                                                            Ranisa
                                                                                                            Participant

                                                                                                              Add Bob Marley to the list.

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                                                                                                              lhaley
                                                                                                              Participant

                                                                                                                Kate Cowher, Bill Cowher, Steelers Coaches wife, did pass away from melanoma.  The family requested privacy and most articles now only mention that she died of skin cancer, not melanoma specifically. Being a huge Steelers fan I was hoping that he would have later made some statements that would have brought awareness but he never did.

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                                                                                                                lhaley
                                                                                                                Participant

                                                                                                                  Kate Cowher, Bill Cowher, Steelers Coaches wife, did pass away from melanoma.  The family requested privacy and most articles now only mention that she died of skin cancer, not melanoma specifically. Being a huge Steelers fan I was hoping that he would have later made some statements that would have brought awareness but he never did.

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                                                                                                                  CarolA
                                                                                                                  Participant

                                                                                                                    It has been discussed, the lack of celebrity connection that would maybe put a face on melanoma.

                                                                                                                    Well, there isn't a lack of it – it just doesn't "connect" or keep going on.   The last name was the keyboard player for Bruce Springsteen.   I think The Boss did some mention of it, but it didn't keep going on.    I can't think of the former NFL coach, whose wife died from melanoma last year–again, a news item, a small statement in the news item.  That's all.   Sam Donaldson is doing well with Stage III, did you know that?   I think Dallas QB Troy Aikman had a melanoma incident.   And to me, when I was first given my biopsy results, I totally freaked out because all I knew of melanoma skin cancer was that Maureen Regan (President's daughter) died from melanoma;  there was a big article in Good Housekeeping about that.   That was not reassuring to me. 

                                                                                                                    Lack of celebrity interest or connection, or the number of people whose lives are affected don't total the number that breast cancer touches?    I don't know.   I just wish we could get more coverage through celebrities, since our media world is SO instigated by celebrity news.

                                                                                                                    CarolA

                                                                                                                    Stage III since 3/05

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                                                                                                                  RMcLegal
                                                                                                                  Participant

                                                                                                                    I'm still suffering from a touch of pink fatigue today, for a couple of reasons.  One, I checked on a fellow fighter's blog this morning (http://www.adventurewithmelanoma.blogspot.com) and Google had placed an ad for a breast cancer charity below her most recent post.  Two, I think that if Yervoy was a breast cancer treatment its approval would've been a much bigger news story and covered by outlets like the NBC Nightly News.  So, I'm working on new lyrics to a couple of more "awareness unfairness" songs, including the Rolling Stones' "Beast of Burden" that I'll be posting on http://www.hotelmelanoma.blogspot.com.

                                                                                                                    What do you think? 

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                                                                                                                    CKasper
                                                                                                                    Participant

                                                                                                                      Pink Fatigue?  You mean all those Susan Komen things that are in your face at every store you walk into and on numerous TV commericals?  Yes I suffer from Pink fatigue, and that's not to diminish the importance of breast cancer awarness as my mother is a breast cancer survivor…..but I sometimes feel really slighted that Melanoma the fastest growing cancer in the world is not given any type of awarness or probably super serious research funding like breast cancer. 

                                                                                                                      Melanoma is a seriously nasty disease and the treatments are just as nasty, we need research money just like Breast Cancer to come up with early detection and other means of fighting the disease.  And the Public needs awarness….maybe with a slogan that says:

                                                                                                                      "It's not just skin cancer its your life!" and do a commercial with melanoma patients and survivors lots of them and make it international.   They could be placed so they make the shape of a globe and wear different colored shirts to depict the countries in the world with the people.  I don't know does any one get this?   So the public gets the picture is isn't some benign skin thing that no one will every get and there by  not to worry about cancer.

                                                                                                                      But funding that is critical.

                                                                                                                       

                                                                                                                      Thats all,

                                                                                                                      C

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                                                                                                                      CKasper
                                                                                                                      Participant

                                                                                                                        Pink Fatigue?  You mean all those Susan Komen things that are in your face at every store you walk into and on numerous TV commericals?  Yes I suffer from Pink fatigue, and that's not to diminish the importance of breast cancer awarness as my mother is a breast cancer survivor…..but I sometimes feel really slighted that Melanoma the fastest growing cancer in the world is not given any type of awarness or probably super serious research funding like breast cancer. 

                                                                                                                        Melanoma is a seriously nasty disease and the treatments are just as nasty, we need research money just like Breast Cancer to come up with early detection and other means of fighting the disease.  And the Public needs awarness….maybe with a slogan that says:

                                                                                                                        "It's not just skin cancer its your life!" and do a commercial with melanoma patients and survivors lots of them and make it international.   They could be placed so they make the shape of a globe and wear different colored shirts to depict the countries in the world with the people.  I don't know does any one get this?   So the public gets the picture is isn't some benign skin thing that no one will every get and there by  not to worry about cancer.

                                                                                                                        But funding that is critical.

                                                                                                                         

                                                                                                                        Thats all,

                                                                                                                        C

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                                                                                                                        Adriene
                                                                                                                        Participant
                                                                                                                          I agree with all these comments. I remember going to the bookstore after being diagnosed and wading through 50,000 breast cancer books and not finding anything specifically about melanoma. My pink fatigue started at that moment.

                                                                                                                          I also dislike that they have a fun bubbly colored ribbon and we have a stinkin black one. I understand our guys wouldn’t be so thrilled about pink, but why not baby blue or something? I agree that black ribbons make you think of death, or a big black nasty mole. We need a more HOPEFUL color!

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                                                                                                                          Adriene
                                                                                                                          Participant
                                                                                                                            I agree with all these comments. I remember going to the bookstore after being diagnosed and wading through 50,000 breast cancer books and not finding anything specifically about melanoma. My pink fatigue started at that moment.

                                                                                                                            I also dislike that they have a fun bubbly colored ribbon and we have a stinkin black one. I understand our guys wouldn’t be so thrilled about pink, but why not baby blue or something? I agree that black ribbons make you think of death, or a big black nasty mole. We need a more HOPEFUL color!

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                                                                                                                            PeterO
                                                                                                                            Participant

                                                                                                                              Face it folks, melanoma will never win the Cancer Olympics. Melanoma literally means "black tumor." Not good PR. Breast cancer, on the other hand, involves an organ with quite a reputation. No wonder the "pink" campaign is so popular. Life isn't fair. Let's move on.

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                                                                                                                              PeterO
                                                                                                                              Participant

                                                                                                                                Face it folks, melanoma will never win the Cancer Olympics. Melanoma literally means "black tumor." Not good PR. Breast cancer, on the other hand, involves an organ with quite a reputation. No wonder the "pink" campaign is so popular. Life isn't fair. Let's move on.

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                                                                                                                                RMcLegal
                                                                                                                                Participant

                                                                                                                                  Life isn't fair and we'll never be the most popular cancer patients.  But that doesn't mean I won't try to increase melanoma awareness and raise money for melanoma research.  I posted some new lyrics to Buffalo Springfield's "Something's Happening Here" at http://www.hotelmelanoma.blogspot.com.

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                                                                                                                                  RMcLegal
                                                                                                                                  Participant

                                                                                                                                    Life isn't fair and we'll never be the most popular cancer patients.  But that doesn't mean I won't try to increase melanoma awareness and raise money for melanoma research.  I posted some new lyrics to Buffalo Springfield's "Something's Happening Here" at http://www.hotelmelanoma.blogspot.com.

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                                                                                                                                    RMcLegal
                                                                                                                                    Participant

                                                                                                                                      I read a fellow melanoma blogger's latest post the other day, and guess what I saw at the end of her post?  Google had placed an advertisement there for a breast cancer charity's fundraising event.  Come join me for a little awareness music to the tune of The Rolling Stones' "Beast of Burden".  http://www.hotelmelanoma.blogspot.com.

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                                                                                                                                        Cynthia C
                                                                                                                                        Participant

                                                                                                                                          I love "Whiter Shade of Pale" and "Something's Happening Here". Thanks Jordan and Rich.

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                                                                                                                                          Cynthia C
                                                                                                                                          Participant

                                                                                                                                            I love "Whiter Shade of Pale" and "Something's Happening Here". Thanks Jordan and Rich.

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                                                                                                                                          RMcLegal
                                                                                                                                          Participant

                                                                                                                                            I read a fellow melanoma blogger's latest post the other day, and guess what I saw at the end of her post?  Google had placed an advertisement there for a breast cancer charity's fundraising event.  Come join me for a little awareness music to the tune of The Rolling Stones' "Beast of Burden".  http://www.hotelmelanoma.blogspot.com.

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                                                                                                                                            boot2aboot
                                                                                                                                            Participant

                                                                                                                                              Ha!, I only WISH it could be breast cancer….! and i am BRCA so you know I AM INFORMED….at least with breast cancer they can put you on tamoxophen…

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                                                                                                                                                ShariC
                                                                                                                                                Participant

                                                                                                                                                  Just so you know, there is some "overflow".  Our nurses here in Small Town Nebraska started a support group from a large grant from the Susan G. Komen foundation.  Because of the grant and very successful fund raising, they were able to expand their services to anybody fighting any type of cancer.  They helped me pay some medical bills with a very generous gift.  Thanks Susan!

                                                                                                                                                  Black is a terrible color – I agree.  And, I don't have to have the most "popular" type of Cancer…I'm ok with that (my "girls" are still intact and that makes me happy!), but I do think its important to raise awareness for all of these cancers — type by type.  How do we DO that?  We should re-invent the wheel in each of our communities…maybe the Lance Armstrong group has some guidelines.  … I'd be willing to give talks, hand out sunscreen, etc?…  Hmmm.  – Shari

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                                                                                                                                                  RMcLegal
                                                                                                                                                  Participant

                                                                                                                                                    Shari, that's good to know.  Despite the fun I poke in the blog at the pink world, I'm a great admirer of the Komen Foundation and the marketing success they've had in getting corporate sponsorships for their cause.  I'd just like to see melanoma (and all cancers) achieve a fraction of that success, and wish that corporate sponsors would spread it around a bit more.  I saw my melanoma doc (Karl Lewis) recently and in the course of talking briefly about my blog he said that melanoma has become as big a problem for young women as breast cancer.  I don't think the general public has any idea that this is the case.  I think all we survivors just need to do our own little thing(s) to build melanoma awareness by sharing our stories.  Facebook and blogging are ways to do that that I've chosen to pursue.  Take care, hope you are doing well.  Have you checked out http://www.adventurewithmelanoma.blogspot.com?  I think you might enjoy it.  Rich

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                                                                                                                                                    RMcLegal
                                                                                                                                                    Participant

                                                                                                                                                      Shari, that's good to know.  Despite the fun I poke in the blog at the pink world, I'm a great admirer of the Komen Foundation and the marketing success they've had in getting corporate sponsorships for their cause.  I'd just like to see melanoma (and all cancers) achieve a fraction of that success, and wish that corporate sponsors would spread it around a bit more.  I saw my melanoma doc (Karl Lewis) recently and in the course of talking briefly about my blog he said that melanoma has become as big a problem for young women as breast cancer.  I don't think the general public has any idea that this is the case.  I think all we survivors just need to do our own little thing(s) to build melanoma awareness by sharing our stories.  Facebook and blogging are ways to do that that I've chosen to pursue.  Take care, hope you are doing well.  Have you checked out http://www.adventurewithmelanoma.blogspot.com?  I think you might enjoy it.  Rich

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                                                                                                                                                      Carol Taylor
                                                                                                                                                      Participant

                                                                                                                                                        Not only that, Music Man, but melanoma's projected to be the deadliest of ALL cancers by 2022…just 11 years away!

                                                                                                                                                        http://www.dermadoctor.com/article-print.asp?ArticleID=263

                                                                                                                                                        webmd has a similar article from 2004!  2004! Seven years ago this was projected and nobody's listening!

                                                                                                                                                        Love your stuff and thanks! (Looking for some disco rewrites "Staying Alive" comes to mind).

                                                                                                                                                        Grace and peace,

                                                                                                                                                        Carol

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                                                                                                                                                        Carol Taylor
                                                                                                                                                        Participant

                                                                                                                                                          Not only that, Music Man, but melanoma's projected to be the deadliest of ALL cancers by 2022…just 11 years away!

                                                                                                                                                          http://www.dermadoctor.com/article-print.asp?ArticleID=263

                                                                                                                                                          webmd has a similar article from 2004!  2004! Seven years ago this was projected and nobody's listening!

                                                                                                                                                          Love your stuff and thanks! (Looking for some disco rewrites "Staying Alive" comes to mind).

                                                                                                                                                          Grace and peace,

                                                                                                                                                          Carol

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                                                                                                                                                          RMcLegal
                                                                                                                                                          Participant

                                                                                                                                                            Thanks Carol.  I've done "Stayin' Alive" in a March 17 blog post titled "Infusion Confusion".  Look in the March archive list on the right hand side of the blog page.  Hope you enjoy it.  Rich 

                                                                                                                                                             

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                                                                                                                                                            RMcLegal
                                                                                                                                                            Participant

                                                                                                                                                              Thanks Carol.  I've done "Stayin' Alive" in a March 17 blog post titled "Infusion Confusion".  Look in the March archive list on the right hand side of the blog page.  Hope you enjoy it.  Rich 

                                                                                                                                                               

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                                                                                                                                                              bcl
                                                                                                                                                              Participant

                                                                                                                                                                Hi Shari, very glad to hear they shared the wealth with you:)  

                                                                                                                                                                I have focused on youth access to tanning beds to raise awareness – the skin cancer warnings might actually resonate if teens were banned from this risky activity.  Regardless if we accept UV radiation is the primary cause or not, acting on skin changes is critical.  A ban is needed so that parents (and the rest of us)  can comprehend the level of danger.

                                                                                                                                                                My government has been spending tax dollars for three decades telling Canadians to be cautious of excess UV exposure, but their weak-kneed warnings are simply not good enough. They state  Try to convince your teenagers not to use tanning salons." http://www.hc-sc.gc.ca/hl-vs/pubs/sun-sol/tanning-bronzer-eng.php    I say,  try convincing teens not to when their friends are telling them they are much too pale and there's an unregulated tanning salon a stone's throw from their high school…

                                                                                                                                                                We also need to help medical professionals understand that it's not just skin cancer.. and I think that's already starting as I've been told there's been great interest among medical students in our local fight to ban teens from tanning beds.  (I recently gave permission for my appeal to our provincial government to be used as a teaching tool by one of the medical school professors…  oh if only I was a better writer!!)

                                                                                                                                                                Here's a link to the states who are attempting to regulate.. it 's an industry site and demonstrates just how hard WE need to lobby to be heard on this issue.

                                                                                                                                                                http://www.theita.com/?page=State_Legislation

                                                                                                                                                                 

                                                                                                                                                                Good luck in whatever you decide to do:)

                                                                                                                                                                 

                                                                                                                                                                linda 1b 

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                                                                                                                                                                bcl
                                                                                                                                                                Participant

                                                                                                                                                                  Hi Shari, very glad to hear they shared the wealth with you:)  

                                                                                                                                                                  I have focused on youth access to tanning beds to raise awareness – the skin cancer warnings might actually resonate if teens were banned from this risky activity.  Regardless if we accept UV radiation is the primary cause or not, acting on skin changes is critical.  A ban is needed so that parents (and the rest of us)  can comprehend the level of danger.

                                                                                                                                                                  My government has been spending tax dollars for three decades telling Canadians to be cautious of excess UV exposure, but their weak-kneed warnings are simply not good enough. They state  Try to convince your teenagers not to use tanning salons." http://www.hc-sc.gc.ca/hl-vs/pubs/sun-sol/tanning-bronzer-eng.php    I say,  try convincing teens not to when their friends are telling them they are much too pale and there's an unregulated tanning salon a stone's throw from their high school…

                                                                                                                                                                  We also need to help medical professionals understand that it's not just skin cancer.. and I think that's already starting as I've been told there's been great interest among medical students in our local fight to ban teens from tanning beds.  (I recently gave permission for my appeal to our provincial government to be used as a teaching tool by one of the medical school professors…  oh if only I was a better writer!!)

                                                                                                                                                                  Here's a link to the states who are attempting to regulate.. it 's an industry site and demonstrates just how hard WE need to lobby to be heard on this issue.

                                                                                                                                                                  http://www.theita.com/?page=State_Legislation

                                                                                                                                                                   

                                                                                                                                                                  Good luck in whatever you decide to do:)

                                                                                                                                                                   

                                                                                                                                                                  linda 1b 

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                                                                                                                                                                  ShariC
                                                                                                                                                                  Participant

                                                                                                                                                                    Just so you know, there is some "overflow".  Our nurses here in Small Town Nebraska started a support group from a large grant from the Susan G. Komen foundation.  Because of the grant and very successful fund raising, they were able to expand their services to anybody fighting any type of cancer.  They helped me pay some medical bills with a very generous gift.  Thanks Susan!

                                                                                                                                                                    Black is a terrible color – I agree.  And, I don't have to have the most "popular" type of Cancer…I'm ok with that (my "girls" are still intact and that makes me happy!), but I do think its important to raise awareness for all of these cancers — type by type.  How do we DO that?  We should re-invent the wheel in each of our communities…maybe the Lance Armstrong group has some guidelines.  … I'd be willing to give talks, hand out sunscreen, etc?…  Hmmm.  – Shari

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                                                                                                                                                                  boot2aboot
                                                                                                                                                                  Participant

                                                                                                                                                                    Ha!, I only WISH it could be breast cancer….! and i am BRCA so you know I AM INFORMED….at least with breast cancer they can put you on tamoxophen…

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                                                                                                                                                                    CKasper
                                                                                                                                                                    Participant

                                                                                                                                                                      Yes everyone who doesn't have breast cancer and some other type of cancer has "Pink Fatigue".  But then not every breast cancer patient is related to a multi-millionaire who lives on Palm Beach and has created this probably in the billions of dollars foundation.  I really wonder how much of the money goes to research and how much goes to advertising and administration costs.

                                                                                                                                                                      Relatives with Breast Cancer, but Anti Pink explotation.

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                                                                                                                                                                        Carol Taylor
                                                                                                                                                                        Participant

                                                                                                                                                                          Go here:

                                                                                                                                                                          http://www.charitynavigator.org/

                                                                                                                                                                          Also, if you get phone calls from charities, you have the right (and responsibility) to ask them what percentage goes to the actual charity work. Once you ask, they are required by law to tell you. Don't let them get away with "I don't have that info handy" stuff.   It's ALWAYS under 17%, I've been told as low as 11%.

                                                                                                                                                                          I got one who called talking and he explained it this way, to paraphrase, that they contract to raise, let's say $250,000 for charity X.  They can raise $1,000,000 for charity X and charity X gets the $250,000 contracted for. The fund raising company pockets thte rest.

                                                                                                                                                                          I learned a long time ago never to give to any group that calls over the phone and to always check out everyone.  One group referred me to their website one time.  It was a children's cancer charity, one I'd not heard of.  They didn't know me because I immediately found their page and it was there, but less than half completed.  Bogus in my book.

                                                                                                                                                                          You've hit one of my all-time pet peeves so I better stop because I can rant all day on this topic!

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                                                                                                                                                                          Carol Taylor
                                                                                                                                                                          Participant

                                                                                                                                                                            Go here:

                                                                                                                                                                            http://www.charitynavigator.org/

                                                                                                                                                                            Also, if you get phone calls from charities, you have the right (and responsibility) to ask them what percentage goes to the actual charity work. Once you ask, they are required by law to tell you. Don't let them get away with "I don't have that info handy" stuff.   It's ALWAYS under 17%, I've been told as low as 11%.

                                                                                                                                                                            I got one who called talking and he explained it this way, to paraphrase, that they contract to raise, let's say $250,000 for charity X.  They can raise $1,000,000 for charity X and charity X gets the $250,000 contracted for. The fund raising company pockets thte rest.

                                                                                                                                                                            I learned a long time ago never to give to any group that calls over the phone and to always check out everyone.  One group referred me to their website one time.  It was a children's cancer charity, one I'd not heard of.  They didn't know me because I immediately found their page and it was there, but less than half completed.  Bogus in my book.

                                                                                                                                                                            You've hit one of my all-time pet peeves so I better stop because I can rant all day on this topic!

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                                                                                                                                                                          CKasper
                                                                                                                                                                          Participant

                                                                                                                                                                            Yes everyone who doesn't have breast cancer and some other type of cancer has "Pink Fatigue".  But then not every breast cancer patient is related to a multi-millionaire who lives on Palm Beach and has created this probably in the billions of dollars foundation.  I really wonder how much of the money goes to research and how much goes to advertising and administration costs.

                                                                                                                                                                            Relatives with Breast Cancer, but Anti Pink explotation.

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                                                                                                                                                                            soniagodwin
                                                                                                                                                                            Guest

                                                                                                                                                                              [email protected]
                                                                                                                                                                              Hi Dear
                                                                                                                                                                              How are you today, I hope all is well. My name is  miss sonia, I am very good looking perfect body figure Girl kind,sincere and trusted, God fearing.And,I saw your advert was delighted to contact you, I hope you will be the true loving, honest and caring Man that I have been looking for, And I have something special to tell you about me, So please contact me directly through my private email address at : ([email protected]) so that I can also send my picture directly to you. Remember that love has,no colour barrier, religious,nationality or distance barrier, but love matters most,my happiness,my joy all is in your hands,please don't let me down ok. I will never stop loving you, regards i kiss you, I will be waiting for your response
                                                                                                                                                                              ([email protected])

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                                                                                                                                                                              soniagodwin
                                                                                                                                                                              Guest

                                                                                                                                                                                [email protected]
                                                                                                                                                                                Hi Dear
                                                                                                                                                                                How are you today, I hope all is well. My name is  miss sonia, I am very good looking perfect body figure Girl kind,sincere and trusted, God fearing.And,I saw your advert was delighted to contact you, I hope you will be the true loving, honest and caring Man that I have been looking for, And I have something special to tell you about me, So please contact me directly through my private email address at : ([email protected]) so that I can also send my picture directly to you. Remember that love has,no colour barrier, religious,nationality or distance barrier, but love matters most,my happiness,my joy all is in your hands,please don't let me down ok. I will never stop loving you, regards i kiss you, I will be waiting for your response
                                                                                                                                                                                ([email protected])

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                                                                                                                                                                                RMcLegal
                                                                                                                                                                                Participant

                                                                                                                                                                                  Pink fatigue has struck me again, as I was nearly marooned in the middle of a "race for the cure" last weekend.  So, another musical rant to the tune of The Beatles' "Nowhere Man"…

                                                                                                                                                                                   http://hotelmelanoma.blogspot.com/2011/09/in-pink.html 

                                                                                                                                                                                  Don't let this happen to you.  Rich

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                                                                                                                                                                                  RMcLegal
                                                                                                                                                                                  Participant

                                                                                                                                                                                    Pink fatigue has struck me again, as I was nearly marooned in the middle of a "race for the cure" last weekend.  So, another musical rant to the tune of The Beatles' "Nowhere Man"…

                                                                                                                                                                                     http://hotelmelanoma.blogspot.com/2011/09/in-pink.html 

                                                                                                                                                                                    Don't let this happen to you.  Rich

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                                                                                                                                                                                    RMcLegal
                                                                                                                                                                                    Participant

                                                                                                                                                                                      Sorry, but "Pinktober" is really wearing on me.  To the tune of Bob Seger's "Against The Wind"….

                                                                                                                                                                                      http://hotelmelanoma.blogspot.com/2011/10/amidst-pink.html 

                                                                                                                                                                                       

                                                                                                                                                                                       

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                                                                                                                                                                                      RMcLegal
                                                                                                                                                                                      Participant

                                                                                                                                                                                        Sorry, but "Pinktober" is really wearing on me.  To the tune of Bob Seger's "Against The Wind"….

                                                                                                                                                                                        http://hotelmelanoma.blogspot.com/2011/10/amidst-pink.html 

                                                                                                                                                                                         

                                                                                                                                                                                         

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                                                                                                                                                                                        RMcLegal
                                                                                                                                                                                        Participant

                                                                                                                                                                                          Sorry, but "Pinktober" is really wearing on me.  To the tune of Bob Seger's "Against The Wind"….

                                                                                                                                                                                          http://hotelmelanoma.blogspot.com/2011/10/amidst-pink.html 

                                                                                                                                                                                           

                                                                                                                                                                                           

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