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Melanoma patient insights needed…

Forums General Melanoma Community Melanoma patient insights needed…

  • Post
    LHogg
    Participant

      Adelphi is an independent market research company specialising in the pharmaceutical industry. We are conducting international research to gain insight into the impact of living with stage 3/4 melanoma, on patient quality of life around the world

      Adelphi is an independent market research company specialising in the pharmaceutical industry. We are conducting international research to gain insight into the impact of living with stage 3/4 melanoma, on patient quality of life around the world

       
      The research aims to provide patients with the opportunity to discuss your melanoma experiences to date and your perceptions of the melanoma treatments you have undergone, identifying key unmet needs
       
      Findings from this research can then be used for the further development of future melanoma therapies
       
      Patients are needed for a 90 minute discussion by telephone or in person and you will be reimbursed for your time. You will also be required to complete a small amount of ‘homework’ prior to the discussion, to take place between 17th Feb – 11th March
       
      If you have been diagnosed with stage 3/4 melanoma and are interested in participating please see country specific contact details below:
       
       

      Germany
      Karin Chwallek
      +49 (0)69 254262512   
       
       
      France
      Ref: ZR11022
      +33 (0)3 20 93 31 47 
       
       
      Sydney, Australia
      0414884924
       
       
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    Viewing 5 reply threads
    • Replies
        jag
        Participant

          I for one would be happy to help with your independant research study if it involves cash.

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          jag
          Participant

            I for one would be happy to help with your independant research study if it involves cash.

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              NicOz
              Participant

                Oh you materialistic thing! :P I'd do it for nothing, but I'll be asking how long it takes because I hate being stuck on the phone forever with any kind of marketing and research. I do very much look forward to being able to give my opinion of oncologists – to anyone. Even strangers over the phone makes it sound strangely appealing :)

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                NicOz
                Participant

                  Oh you materialistic thing! :P I'd do it for nothing, but I'll be asking how long it takes because I hate being stuck on the phone forever with any kind of marketing and research. I do very much look forward to being able to give my opinion of oncologists – to anyone. Even strangers over the phone makes it sound strangely appealing :)

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                  NicOz
                  Participant

                    Ha ha- just saw the 90 min thing (was to eager too stir you about the $, John). Now I'll have to think twice about it. 90 mins? Really? Well, no wonder they're paying…

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                    NicOz
                    Participant

                      Ha ha- just saw the 90 min thing (was to eager too stir you about the $, John). Now I'll have to think twice about it. 90 mins? Really? Well, no wonder they're paying…

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                    Kim K
                    Participant

                      SORRY – THIS IS LONG…

                      My interview is in around 30 min. and I will be reimbursed $200.  Don't be so cynical until you know the facts.  The nurse interveiwing me works out of her home office and we had a "real" conversation.  We both had things in common and this was prior to the interview.

                      My impressions based on the depth of information and experiences is that the pharmaceutical company really is interested in our experiences, frustrations, and how we really live day to day etc.  If this gives them the hope that we aren't dead people walking, and it is worthwhile to pursue developing treatments for such a dismal, resistant, underfunded, underresearched disease, then so be it.

                      Yes, while pharmaceuticals want to make money, they are looking into the new discoveries that have made recent breakthroughs in our disease.  I for one am glad they are interested in us.  Afterall, we all know the key to beating this will be a combination of different types of drug taylored for the individual patients tumor markers.  THAT IS VERY EXPENSIVE and difficult to get good mixed drug studies approved by the FDA.

                      It is easy to compare a chemo drug to another, but very difficult to study a few different inhibitors with CTLA blockers and vaccine all combined.  Too many variables for the scientific method to handle.  Now mix in how some of us do great, the majority don't and how difficult and competitive it is to recruit people for clinical trials.

                      Excuse my typing, I am very passionate about this…  This is our chance for the big wigs to hear our voice.  I have the utmost respect for those fighting breast cancer.  I have had a few family members battle this ugly disease, but with all due respect – I am sick and tired of all these damned pink ribbons when my child is told she cannot bring her sunscreen to school because the other kids are using it.  (This right after my IL-2 treatments!!!), or that she cannot wear her sunsuit during splash day, only 1 swimsuit.  Come on!  The sun suit covers her swim suit, and what sensible 5 year old wants to be naked under the sunsuit when everyone else has on a bathing suit?!  She said, but Mom, everyone can see my privates!

                      Needless to say I was pissed when she got burned……

                      Cacuasians are minorities in Hawaii.  There is tons of education ON TOP of research.

                      So everyone, this is your chance to make your voice heard, no matter what the motive.  If it means the drug companines make money, then so be it!  Afterall, if we are a lost cause as so many think, then why on earth would they deal with the FDA and complicated trial designs if no one cared or there was no incentive to do so?

                      I for one found this interview and process very rewarding.  I told them about the misdiagnosis, mistreatment, how I needed to be my own advocate and how ignorant so many are in the medical field.  I also told them about how grateful I was for this site, the good doctors I found, the dealing with who will raise my young girls?  How unfair to have my life cut short and leave them behind.  How we have to learn how to navigate the clinical trial system, deal with stupid people who say it's only skin cancer etc….  How you have to be a "good" patient while in the ICU so the nurse dosn't leave your crap filled "hat" to overflowing when your body is crashing while undergoing IL-2, how demenaing it is when you crap in your pants because you are so weak you can't make it to the commode, how there is no shower in the ICU after your IL-2 and you have to move the world to get permission to shower on another floor, how some nurses "don't do cancer patients" because they are too depressing to be around etc……

                      Sorry, but the past 8 years came back all at once.  I didn't realize the emotions I didn't have time to deal with because I was too busy trying to stay alive…….

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                      Kim K
                      Participant

                        SORRY – THIS IS LONG…

                        My interview is in around 30 min. and I will be reimbursed $200.  Don't be so cynical until you know the facts.  The nurse interveiwing me works out of her home office and we had a "real" conversation.  We both had things in common and this was prior to the interview.

                        My impressions based on the depth of information and experiences is that the pharmaceutical company really is interested in our experiences, frustrations, and how we really live day to day etc.  If this gives them the hope that we aren't dead people walking, and it is worthwhile to pursue developing treatments for such a dismal, resistant, underfunded, underresearched disease, then so be it.

                        Yes, while pharmaceuticals want to make money, they are looking into the new discoveries that have made recent breakthroughs in our disease.  I for one am glad they are interested in us.  Afterall, we all know the key to beating this will be a combination of different types of drug taylored for the individual patients tumor markers.  THAT IS VERY EXPENSIVE and difficult to get good mixed drug studies approved by the FDA.

                        It is easy to compare a chemo drug to another, but very difficult to study a few different inhibitors with CTLA blockers and vaccine all combined.  Too many variables for the scientific method to handle.  Now mix in how some of us do great, the majority don't and how difficult and competitive it is to recruit people for clinical trials.

                        Excuse my typing, I am very passionate about this…  This is our chance for the big wigs to hear our voice.  I have the utmost respect for those fighting breast cancer.  I have had a few family members battle this ugly disease, but with all due respect – I am sick and tired of all these damned pink ribbons when my child is told she cannot bring her sunscreen to school because the other kids are using it.  (This right after my IL-2 treatments!!!), or that she cannot wear her sunsuit during splash day, only 1 swimsuit.  Come on!  The sun suit covers her swim suit, and what sensible 5 year old wants to be naked under the sunsuit when everyone else has on a bathing suit?!  She said, but Mom, everyone can see my privates!

                        Needless to say I was pissed when she got burned……

                        Cacuasians are minorities in Hawaii.  There is tons of education ON TOP of research.

                        So everyone, this is your chance to make your voice heard, no matter what the motive.  If it means the drug companines make money, then so be it!  Afterall, if we are a lost cause as so many think, then why on earth would they deal with the FDA and complicated trial designs if no one cared or there was no incentive to do so?

                        I for one found this interview and process very rewarding.  I told them about the misdiagnosis, mistreatment, how I needed to be my own advocate and how ignorant so many are in the medical field.  I also told them about how grateful I was for this site, the good doctors I found, the dealing with who will raise my young girls?  How unfair to have my life cut short and leave them behind.  How we have to learn how to navigate the clinical trial system, deal with stupid people who say it's only skin cancer etc….  How you have to be a "good" patient while in the ICU so the nurse dosn't leave your crap filled "hat" to overflowing when your body is crashing while undergoing IL-2, how demenaing it is when you crap in your pants because you are so weak you can't make it to the commode, how there is no shower in the ICU after your IL-2 and you have to move the world to get permission to shower on another floor, how some nurses "don't do cancer patients" because they are too depressing to be around etc……

                        Sorry, but the past 8 years came back all at once.  I didn't realize the emotions I didn't have time to deal with because I was too busy trying to stay alive…….

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                          Bonnie Lea
                          Participant

                            Oh Kim,  I am reaching out and hugging you right now.  You did good my dear girl.  yes

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                            Bonnie Lea
                            Participant

                              Oh Kim,  I am reaching out and hugging you right now.  You did good my dear girl.  yes

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                              NicOz
                              Participant

                                You go, girl! If it means the chance to vent my butt off, then 90 mins is a small price to pay :D No cynicism here, just not sure that 90 mins would do-able with my head/concentration that soon after surgery, but it sounds like it could be very cathartic from what you've written! Like you, I don't care what the results are, but I DO care that this is addressing QOL (which is often all too ignored with these things) Sounds like a fantastic opportunity to be heard, so I'll be giving them a call in the near future.

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                                NicOz
                                Participant

                                  You go, girl! If it means the chance to vent my butt off, then 90 mins is a small price to pay :D No cynicism here, just not sure that 90 mins would do-able with my head/concentration that soon after surgery, but it sounds like it could be very cathartic from what you've written! Like you, I don't care what the results are, but I DO care that this is addressing QOL (which is often all too ignored with these things) Sounds like a fantastic opportunity to be heard, so I'll be giving them a call in the near future.

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                                  glewis923
                                  Participant

                                    Let me have a go !!   Seriously, I agree it sure can't hurt.  Sounds like you've already summed it up pretty good, but "they" need to hear from ALL of US !     Count me in.  Heck, I'll pay them as it will probably be some good lettin' off steam therapy for  me…….I'll pay 'em $ 50,000 cold cash if they'll deliver 4 rounds of IPI and a 6 mth. PLX4032 supply!  No questions asked.  !!!  …..and that would be a bargain.

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                                    glewis923
                                    Participant

                                      Let me have a go !!   Seriously, I agree it sure can't hurt.  Sounds like you've already summed it up pretty good, but "they" need to hear from ALL of US !     Count me in.  Heck, I'll pay them as it will probably be some good lettin' off steam therapy for  me…….I'll pay 'em $ 50,000 cold cash if they'll deliver 4 rounds of IPI and a 6 mth. PLX4032 supply!  No questions asked.  !!!  …..and that would be a bargain.

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                                      jag
                                      Participant

                                        $200? sweet! that is all I needed to know, count me in.

                                        JAG (aka the money whore).

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                                        jag
                                        Participant

                                          $200? sweet! that is all I needed to know, count me in.

                                          JAG (aka the money whore).

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                                          EddieM
                                          Participant

                                            lol

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                                            EddieM
                                            Participant

                                              lol

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                                            dawn dion
                                            Participant

                                              how do i become part of this?

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                                                paul
                                                Participant

                                                  Anyone know the U.S. phone number on this?

                                                  Paul

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                                                  paul
                                                  Participant

                                                    Anyone know the U.S. phone number on this?

                                                    Paul

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                                                    paul
                                                    Participant

                                                      Anyone know the U.S. phone number on this?

                                                      Paul

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                                                      paul
                                                      Participant

                                                        Anyone know the U.S. phone number on this?

                                                        Paul

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                                                      dawn dion
                                                      Participant

                                                        how do i become part of this?

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