Dear Carol, Sorryto hear about your PE with sprycel. Many individuals take less than the standard dose and remain pcru. They take what their bodies can tolerate and still have the drug be effective. ARe you on 100? That dose is toxic for lots of folks. I take 50 currently, will titrate down to 40 in a month. For as long as I have been on sprycel I have taken a low dose diuretic with it daily. That was to stay ahead of any possible swelling issues per my oncologist. I had swelled with gleevec and he did not want me to have a problem andthen have to treat it, but rather stay ahead of the possible issues that I seem to be prone to. This has worked for me. I don't know whatshape your kidneys are in two years off of gleevec, but if they are o.k., you may want to ask your doc about dosage, as well as possibly a diuretic to keep symptoms at bay. I cannot say how many days off the drug is reasonable post a PE, but your own experience with your body gives you a lot of information. The dose may be too much for you...many here and in other groups are on anywhere from 20 a day to 100 a day of sprycel and doing well. Good luck to you and keep us posted! Beth
-----Original Message----- From: ICANDOALLTTC <icandoall...@aol.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Thu, Jun 6, 2013 10:30 am Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 4 Messages in 1 Topic Hi Carol, I have been on Sprycel since 2009 with no PE. I reached remission on Sprycel. Cutting back on the dose makes sense to me. Good luck, Jeanie<3 In a message dated 6/6/2013 9:35:44 A.M. Eastern Daylight Time, sion...@aol.com writes: What is your dose and your PCR results? On Jun 6, 2013, at 7:46 AM, cak...@aol.com wrote: I haven't posted in a while, but always read everyone else's...now i have a question for everyone on Sprycel. I was switched to Sprycel 2 years ago due to kidney issues with the Gleevec. I was diagnosed in July of 2001.Have been undetectable for years...now I am getting pluerral effusions. I just had the second one drained yesterday....The onc has taken me off Sprycel for 2 weeks.....In everyone else's experience does that seem long enough. I took an 8 day break a month ago but the effusion was back in 5 days....probably was going to happen anyway....I think he is being very cautious, but just wondering what everyone else has done...went into the archives and learned a lot....but need a little more advice to argue my point of a longer break....thanks....Carol Kalat In a message dated 6/5/2013 7:43:23 A.M. Eastern Daylight Time, cmlhope@googlegroups.com writes: Today's Topic Summary Group: http://groups.google.com/group/cmlhope/topics Taking a break from gleevec after over 12 years [4 Updates] Taking a break from gleevec after over 12 years Marty Gartenberg <wa2...@gmail.com> Jun 04 08:59AM -0400 Hi Sylvia, First, welcome back to the group. How well I remember those "good" olden days of when gleevec first came out. Unfortunately it wasn't around when I was diagnoised with CML in 1989. The only thing at the time was interferon but for me it would have a blind study case weather I would get it or just a placebo. Since my WBC was well over 480K (480,000+) at the time and I wasn't sure if I would get it or not I opted for a bone marrow transplant. Not much choice in the matter. Anyway, since you were on gleevec for so many years do you know if you are PCRU now? I would imagine that you are but you still need to be tested to see if you are just as your doctor suggests. I actually don't blame you for wanting to stop the gleevec but you must be aware of the mutations that could come about. However since your doctor wants to test you for if you are PCRU within four months I think that is a wise choice. Nice to see you on Zavies Zero List. I hold the number one place on the list. I sure do miss him and Mommy Lottie as well. (from the c...@yahoogroups.com) Sylvia you just take one day at a time just as I do. After all, neither of us would still be hear if there were nothing in the arsenal to fight CML 18's (symbol for life) Marty Darlene <seces...@yahoo.com> Jun 04 08:09AM -0700 Two years ago I insisted on a break from gleevec as well although my oncologist wasn't keen. My counts immediately began to creep up after being undetectable for almost 10 years. I couldn't feel the difference in the counts--in fact I felt great -but after 2 BCR-abl tests which showed the upward trend, my doctor ( and my family) insisted I resume Gleevec. Within 6 months I was undetectable again. The muscle cramps had been pretty bad before the break but stopped completely for awhile. Now they're back but not as bad as before. I think your doctor is wise to monitor you closely but I also think a break can do your body some good if you're careful. I may be wrong but I got the idea somewhere that some people are able to stay off longer. Maybe you' will be one of the lucky ones. Good luck! ANGELYN ESDERS <esd...@rogers.com> Jun 04 08:13PM -0700 I started Gleevec at McMaster University Medical Centre in Hamilton, Canada, on Jan. 22, 2001. My tests in June 2001 confirmed that I had reached cytogenic remission. I think I was #69 in Zavie's Zero Club. I am planning to discuss a holiday from Gleevec next time I see Dr. Walker, my hematologist at Juravinski in Hamilton. We shall see....12 years is a long time.... What lies behind us and what lies before us are tiny matters compared to what lies within us.... Angie ________________________________ From: Richard H <richard1huff...@comcast.net> To: cmlhope@googlegroups.com Cc: "CMLHope@googlegroups.com" <CMLHope@googlegroups.com> Sent: Monday, June 3, 2013 11:25:59 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/groups/opt_out. Marty Gartenberg <wa2...@gmail.com> Jun 05 06:12AM -0400 Hi Angie, I wish you the very best of luck on your Gleevec "holiday" Yes, 12 years is a long time. 18's Marty Number 1 on Zavies Zero List. I sure do miss him. Disgnosed July 1989 Bone Marrow Transplant May 21St 1990 (23 years ago) You received this message because you are subscribed to the Google Group cmlhope. You can post via email. To unsubscribe from this group, send an empty message. For more options, visit this group. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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