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Please sign UK petition...

Started by grinleyboy , May 24 2011 03:25 AM

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9 replies to this topic

#1 grinleyboy

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Posted 24 May 2011 - 03:25 AM

Hi I am new here, from the UK, have been lurking and bowing to Treys knowledge for some while but this is my first post. 18 months on Imatinib, not many side effects (lucky me) and have hit a plateau but numbers not to bad (2.3 log reduction). I may have to switch drugs in the next 3-6 months so the following most probably will directly effect me...

Is there any way we can get as many people on here/friends/family/pets(!) to sign the following petition? Also could it be a permanant link (stay near teh top?) for a week or so on this forum (not sure if this can be done!)

http://www.gopetitio...t-think-so.html

I know it has been posted before but we need as many as possible before the 27th I think, when it was going to be printed and presented.

Please help stop this madness...

Thanks for all your info very much appreciated not just in the US but all around the world

Ian

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#2 hannibellemo

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Posted 24 May 2011 - 06:24 AM

Welcome!

It would be easy to keep this petition at the top of the discussion board - just add something to it everyday and that will bump it to the top. I signed early on and I would imagine that quite a few others of us did as well.

If not, your post will serve as a gentle reminder.

Pat

"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>

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#3 CallMeLucky

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Posted 24 May 2011 - 08:49 AM

I signed it

Date - Lab - Scale - Drug - Dosage MG - PCR

2010/Jul - MSKCC - Non-IS - Gleevec - 400 - 1.2%

2010/Oct - MSKCC - Non-IS - Gleevec - 400 - 0.25%

2010/Dec - MSKCC - Non-IS - Gleevec - 400 - 0.367%

2011/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.0081%

2011/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%

2011/Sep - MSKCC - Non-IS - Gleevec - 400 - 0.00084%

2011/Dec - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Mar - MSKCC - Non-IS - Gleevec - 400 - 0.004%

2012/Jun - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Sep - MSKCC - Non-IS - Gleevec - 400 - 0%

2012/Dec - MSKCC - Non-IS - Sprycel - 100 - 0%

2013/Jan - Quest - IS - Sprycel - 50-60-70 - 0%

2013/Mar - Quest - IS - Sprycel - 60-70 - 0%

2013/Apr - CUMC - Non-IS - Sprycel - 50 - 0.036%

2013/May - CUMC - Non-IS - Sprycel - 50 - 0.046%

2013/Jun - Genoptix - IS - Sprycel - 50 - 0.0239%

2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0192%

2013/Jul - Genoptix - IS - Sprycel - 70 - 0.0034%

2013/Oct - Genoptix - IS - Sprycel - 70 - 0.0054%

2014/Jan - Genoptix - IS - Sprycel - 70 - 0.0093%

2014/Mar - Genoptix - IS - Sprycel - 100 - 0.013%

2014/Apr - Genoptix - IS - Sprycel - 100 - 0.0048%

2014/Jul - Genoptix - IS - Sprycel - 100 - 0%

2014/Nov - Genoptix - IS - Sprycel - 100 - 0.047%

2014/Dec - Genoptix - IS - Sprycel - 100 - 0%

2015/Mar - Genoptix - IS - Sprycel - 100 - 0%

2015/Jun - Genoptix - IS - Sprycel - 100 - 0%

2015/Sep - Genoptix - IS - Sprycel - 100 - 0%

2015/Dec - Genoptix - IS - Sprycel - 100 - 0%

2016/Mar - Genoptix - IS - Sprycel - 100 - 0.0228%

2016/Jun - Genoptix - IS - Sprycel - 100 - 0%

2016/Sep - Genoptix - IS - Sprycel - 100 - 0%

2016/Dec - Genoptix - IS - Sprycel - 100 - 0%

2017/Mar - Genoptix - IS - Sprycel - 100 - 0%

2017/Jun - Genoptix - IS - Sprycel - 100 - 0%

2017/Sep - Genoptix - IS - Sprycel - 100 - 0%

2017/Dec - Genoptix - IS - Sprycel - 100 - 0%

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#4 SunNsand

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Posted 24 May 2011 - 12:39 PM

I signed a few wks. ago. I agree, lets keep bumping this up. We need to help our UK friends.

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#5 hannibellemo

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LocationNorth Central Iowa

Posted 25 May 2011 - 06:12 AM

Bumping.

Pat

"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>

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#6 grinleyboy

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Posted 26 May 2011 - 06:40 AM

Thank you all for supporting us, today is the last day before it is presented...

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#7 cometbro

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Posted 26 May 2011 - 06:57 AM

Signed.

""The Committee concluded that it is clear that dasatinib, high-dose imatinib and nilotinib provide clinical benefit for people with imatinib-resistant CML. However, the Committee agreed that the paucity of the evidence base means that the magnitude of the benefit is uncertain."""

I dont get it. So will they give 2nd generation drugs to people that are NOT resistant to Gleevec?...since they won't to people that are resistant to it? Or is Gleevec the only option no matter what?

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#8 grinleyboy

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Posted 30 May 2011 - 03:03 PM

Just need another 19 to make 6000, please sign if you haven't already, we need your help...

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#9 Tedsey

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Posted 31 May 2011 - 02:03 PM

Been away from the boards a few days. OK, I am signing. I also had the same thing happen on G. My PCR stalled. I switched to Sprycel, and although I am still a turtle, my PCR numbers started moving in the right direction. BTW, I feel great on Sprycel if you decide to go with it.

Take care,

Tedsey