Does anyone ever get invited to participate in interviews, surveys or group discussions on CML? Every once in a while, I'll get an e-mail or letter with such a request. Sometimes I "qualify", other times I don't. I might get a couple dollarsor a gift card. I never hear what the results are. Do my answers help other CML'ers or just the drug companies or marketers.
Interviews, Surveys, Group Discussions
Posted 26 February 2011 - 01:38 PM
I just got one of those, and it seems I will be flown all the way from Seattle to Maryland for about 24 hours and then have to return. I want to help out, but flying takes such a toll these days. I am thinking about it. It was from Bristol Myers Squibb, I am on Sprycel.
Posted 26 February 2011 - 03:05 PM
I just did one recently through e-mail, and I am waiting for a payment for my involvement in the survey. Other than this one, I have never done one before.
Posted 26 February 2011 - 05:22 PM
I wish I had gotten that invite - I live in Maryland and also take Sprycel. I hope you can go - I think it would be a great opportunity to share issues/concerns with the drug companies and perhaps make a difference for other CMLers. But you're right --- I was in Seattle not too long ago, and that's a bit of a trek for just 24 hours. I hope they compensate you well for your time too.
Hope it works out!
Posted 26 February 2011 - 05:32 PM
I received the same one. It seemed a little funny. I wrote back that I am intersted.
About 4 years ago I was called by a marketing group in Philadelphia. They were begging me to come to talk with them. They gave me a parking voucher and promised $75.00 cash. I sat in a room with one woman, but she said that a few people were behind a glass wall, I guess a one-way mirror. At one point, during the interview, I saw the room behind this glass wall light up, because someone was leaving the room. There was about 12 people sitting there with note pads. The woman wondered how I remembered to take my Gleevec every day. I said that I just did. This woman really wanted me to say that an orange (one of Gleevec's colors) wrist watch with an alarm would help me to take my pill. I guess I answered most of their questions correctly, and was actually given $150.00 cash when I left.
Maybe we'll see each other in Maryland.
Posted 26 February 2011 - 10:10 PM
Last year I was contacted & agreed to a phone interview. It took about 45 minutes & then received a check for $150. It was conducted by an independent research company but during the interview it became obvious it was for Bristol Myers Squibb.
I have cancer but it doesn't have me
Posted 26 February 2011 - 10:31 PM
I got that too, but didn't even respond - mainly because flying is such a hassle these days, but also because the notice was so short. Let us know what happens if you go! I am also on Sprycel and I signed up for that "My Sprycel Support" program that was mentioned on this board. Probably why I got the inquiry about interest.
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 27 February 2011 - 11:56 PM
@ Jane: Call 908-222-4870, the coordinator is Linda Kipe. I am sure that I only got invited because I had signed up for the MySprycel Support, and signed up for their co-pay assist (which comes out to a whopping $10 a month for me--great insurance, very very very lucky, did I mention that I was lucky????).
@ Pat: They heard that the date was too soon and pushed it back! You should call. The date is still in March, but I think more towards the end.
Good luck, would love to see you both!!!
Posted 21 March 2011 - 07:46 AM
I went to the CML Focus Group meeting in Baltimore. Including myself, there were 10 CML patients from all over the US. The sponsor was BMS. They are marketing a new CML tracking software, which shows some promise. They listened to our stories about when we were Dx'ed, side effects, financial hardship and how CML has changed us. I think everyone came away with something from the meeting. We exchanged e-mails, and I hope to communicate with these new friends in the future.
Posted 21 March 2011 - 11:58 AM
I was so sorry I couldn't go, but they finally invited me just one day before the conference and I just didn't think I could manage the cross country flight for a 24 hour stay and then fly back.
I hope they call again next year, it sounds fabulous!!!
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