Sylvia, I am very glad you have had such a positive outcome with gleevec for so long. I too am glad your doctors are willing to work closely with you. I am no doc, but as a fellow CML'er I think we each need to listen to our bodies and trust some of our knowing about when, if possible you need a break. As long as your BCR and blood work are watched closely, I imagine, a rest from meds, for however long you decide with your doctors, won't be harmful. If you are undetectable, then that's a good thing. I appreciate for all of us the fear that comes with going on a holiday, stopping a med, or having to try a new one...many people here have been successful taking time off, and went back on if and when their blood work showed they needed to return to meds. The drugs differ for each of us, as do the toxicities. I wish you all the best, Beth
-----Original Message----- From: Susan Zimmerman <[email protected]> To: cmlhope <[email protected]> Sent: Mon, Jun 3, 2013 10:10 pm Subject: Re: [CMLHope] Re: Taking a break from gleevec after over 12 years Sylvia, I applaud you for taking yourself off it, because the body needs a break from all the side effects for sure. I've been off for 6 years and 3 months now, but thinking about trying one of the new drugs. My recent FISH test showed 17.74 and I feel like I am ready to try a new drug. In the beginning I was tested every two months, then went to six months. I thank the people from this group for helping with suggesting doctors from the Chicago area. I wish you the very best in your vacation from gleevec! Mine has been absolutely wonderful. Susan Z. "Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you." Hab. 1:5 -----Original Message----- From: Richard H <[email protected]> To: cmlhope <[email protected]> Cc: CMLHope <[email protected]> Sent: Mon, Jun 3, 2013 11:26 pm Subject: [CMLHope] Re: Taking a break from gleevec after over 12 years That's great news. When I went off Gleevec 5 years ago. I was tested every month for a while then as I progressed with excellent results to 3 months and then 6 months. The body also responded nicely, I gained energy, lost 30 pounds and my leg edema went away. I am glad your ONC is willing to work with you. Richard H. On Monday, June 3, 2013 9:35:22 PM UTC-5, Sylvia wrote: Hello everyone It has been many years since I have written to this group. I was diagnosed with CML in June 1998 at 37 years old and many friends I met through this group are no longer with us. Those were the days of interferon and ara-c, procrit etc (all via injection). I was one of the first to start Gleevec in Canada in April 2001. I am number 80 in Zavies Zero club! Gleevec has given me back my life and I am very thankful for it. That being said the last few months I have had swelling in my legs and stiff knees and I have taken myself off the Gleevec. In 12 years I have barely missed any days, but now I am feeling my body need a rest. I am worried about my liver and Millie's email reinforces my feelings that I need a break from the Gleevec. I told my dr and he wants me to come in for a PCR in a month and not wait until my 4 mos check up in Aug. I am very interested in what everyone in this community thinks and if they can offer me some advice. My prayers to Millie and all those with challenges. Thanks to everyone for their support all these years. Sylvia -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out. -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out. -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out.
