› Forums › General Melanoma Community › Melanoma patient insights needed…
- This topic has 24 replies, 8 voices, and was last updated 13 years, 7 months ago by
paul.
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- February 10, 2011 at 5:28 pm
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 needsFindings from this research can then be used for the further development of future melanoma therapiesPatients 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 MarchIf you have been diagnosed with stage 3/4 melanoma and are interested in participating please see country specific contact details below:GermanyKarin Chwallek+49 (0)69 254262512FranceRef: ZR11022+33 (0)3 20 93 31 47Sydney, Australia0414884924
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- February 10, 2011 at 5:55 pm
I for one would be happy to help with your independant research study if it involves cash.
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- February 10, 2011 at 6:35 pm
Oh you materialistic thing! 😛 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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- February 10, 2011 at 6:35 pm
Oh you materialistic thing! 😛 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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- February 10, 2011 at 7:32 pm
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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- February 10, 2011 at 8:08 pm
Oh Kim, I am reaching out and hugging you right now. You did good my dear girl.
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- February 10, 2011 at 8:08 pm
Oh Kim, I am reaching out and hugging you right now. You did good my dear girl.
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- February 10, 2011 at 8:52 pm
You go, girl! If it means the chance to vent my butt off, then 90 mins is a small price to pay 😀 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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- February 10, 2011 at 8:52 pm
You go, girl! If it means the chance to vent my butt off, then 90 mins is a small price to pay 😀 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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- February 11, 2011 at 1:53 am
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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- February 11, 2011 at 1:53 am
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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- February 10, 2011 at 7:32 pm
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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