Hi Pat, He is a lucky one that dose not have CML. But if Grace and I fly out their next winter I will for sure let you know so that we can get togather. Greenie In a message dated 3/12/2012 3:30:58 P.M. Eastern Daylight Time, [email protected] writes:
Hi Greenie - Cave Creek is a wonderful town….home of the infamous Horny Toad restaurant… .and some fantastic artists too. One of my favorite bead stores is there. I hope your friend is aware of the Phoenix CML Connection group – the next meeting is Saturday, March 24. Barb Stanley is the facilitator, a survivor of 10+ years. There’s more info on the NCMLS website or I would also be happy to provide info too. _http://www.nationalcmlsociety.org/what-we-do/cml-connection_ (http://www.nationalcmlsociety.org/what-we-do/cml-connection) Let me know if YOU ever get out to Arizona, I would love to meet you and show you around! Pat From: [email protected] [mailto:[email protected]] On Behalf Of [email protected] Sent: Monday, March 12, 2012 12:18 PM To: [email protected] Subject: Re: [CMLHope] Re: loss of effectiveness of gleevec and sprycel Pat, thank you for this information, it's going to be very helpful. A good friend of mine lives in Cave Creek, AZ. Greenie Ft. Myers, FL. In a message dated 3/12/2012 2:08:23 P.M. Eastern Daylight Time, [email protected]_ (mailto:[email protected]) writes: There are several reasons for a loss of response, your physician will need to order testing to determine if there is a gene mutation. In the meantime, education on current CML options can help ease your mind. This is also a topic we all need to think about and a key reason why the National CML Society and Patient Power have teamed up to bring current clinical information from the country's top experts directly to patients through video interviews. Please see what Dr. Michael Mauro from OHSU has to say, from ASH 2011, in this interview: Considering Your Treatment Options to Better Manage CML _http://www.patientpower.info/video/considering-your-treatment-options-to-be tter-manage-cml_ (http://www.patientpower.info/video/considering-your-treatment-options-to-better-manage-cml) There are additional interviews on Patient Power from ASH on the three FDA approved drugs and the two additonal drugs now in clinical trials and showing very positive results for those dealing with loss of response. In short, there are more options than ever before for us and many reasons to be optimistic! Hope this is helpful! Pat Elliott Phoenix, Arizona On Mar 12, 10:54 am, skink1100 <[email protected]_ (mailto:[email protected]) > wrote: > I have had cml for nearly 10 years. For several years I was at the > not detectable level in my pcr tests. Last year the gleevec seemed to > no longer be as effective...and my doctor switched me to > sprycel...about 4 months ago...my results continue to decline, > although my blood looks ok. Has anyone had a similar > experience...could it be a new mutation? Where does on go from > here...getting worried. -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope
