Hi Richard. Wow, five years off Gleevec - that's wonderful! What confuses me though, is this: My doc freaks out when I drop below a 3-log reduction, which, as I understand it, is equal to 0.1%, yet your doc does not get worried until you hit 10%. So, I am really wondering if I understand the relationship between percentage reading and log reduction. My understanding is: 10% = 1 log, 1% = 2 log, 0.1% = 3 log, etc.... Do I have this totally wrong or are we looking at two doctors with very different points of view?
On Sunday, July 14, 2013 11:47:30 PM UTC-4, Richard H wrote: > > Sorry abouy my twisted mind. I have been off 400mg Gleevec for 5 years > and hoping my christmas present will be to continue to 6 years. I am > detectable but the low. I had my first scare in April when the reading > spiked to 9.475% (Gleevec starts when we see 10%) and the retest dropped > back to 4.57% in June. Dr. said your guess is as mine as to why, do you > want to test in 3, 6, or 8 months. > > Richard H. > > On Saturday, July 13, 2013 11:28:58 PM UTC-5, Beth wrote: >> >> Dear Richard, >> I hope you can go down to 400 too! And as for the steel trap >> comment...it's nice to know ther eare some kindred spirits out there...let >> us know what the verdict is about lowering your dose! Have a good weekend, >> Beth >> >> -----Original Message----- >> From: Richard H <richard...@comcast.net> >> To: cmlhope <cml...@googlegroups.com> >> Sent: Sat, Jul 13, 2013 10:11 pm >> Subject: Re: [CMLHope] >> >> I love to use this statement "I had a mind like a steel trap" when I >> speak of my memory loss. I now add "and now it make a good strainer". I >> hope tou get a chance to go down to 400mg Gleevec. >> >> Richard H. >> >> On Saturday, July 13, 2013 8:10:09 AM UTC-5, caselmar wrote: >>> >>> Hi Millie: >>> >>> I've lost a lot of eyelashes and brows, too. Even have done false >>> lashes when I had a wedding to go to. Part of the problem I see with >>> people is that almost everyone knows someone who has had cancer. Most of >>> those patients either had infused chemo and/or radiation. So they were bad >>> but a point came where they recovered and life went on. For us, at least >>> for me, there is no chance in the near future that I'll be off of Gleevec. >>> Our problems and side effects often take time to occur, memory loss is one >>> for me. >>> >>> I had a mind like a steel trap. Now, I can remember long term things >>> but short term is going faster than a speeding bullet. People who don't >>> get it tell me it is normal at my age to start losing your memory. I know >>> that as you age your memory may worsen but at 61, I don't think so. Plus, >>> I can tell it is a rapid increase in what I am forgetting. >>> >>> My bone pain and muscle cramps are very severe, and naturally the >>> fatigue is far worse. I wonder if one day sooner rather than later I'll be >>> in a wheelchair or on a walker. Sometimes I can't zip up a dress or coat, >>> even if it is front zip. If it is a back zip, forget it. My husband needs >>> to be here to help with that. I can't hook bracelets or necklaces. None >>> of this is major because I'm so grateful to be alive. But it is still a >>> quality of life issue. I tend to have bad Gleevec stomach. I try to stay >>> away from foods that trigger it. But being from Maryland, I love steamed >>> crabs. I eat them but somewhere within a 15 minute drive to my house so I >>> can use my own bathroom when the diarrhea hits. There is no spontaneous >>> planning because I always have to look at how far I'll be from home because >>> of this. >>> >>> That's the kind of stuff I'm talking about that people don't get. They >>> see me and think, well she works, she looks pretty good for someone with >>> leukemia, must not be too bad. And for the most part, they are correct. I >>> have a positive attitude and feel very blessed to have an illness that is >>> manageable. CML has made me appreciate every single day. >>> >>> Hope your results from the biopsy come in quickly. I know my bone >>> marrow results came in yesterday but my onc didn't call. He and I have a >>> wonderful relationship so I'm assuming that he just didn't get a chance to >>> look them over. He is one of the team doctors for the Baltimore Orioles >>> and he may have been at the game yesterday. Normally I don't worry about >>> the results but he has agreed that if they are good, he's going to try and >>> take me down from 600 mg of Gleevec to 400 for a trial period of 3 months. >>> Hoping that will help with the side effects. If not, I'll just deal with >>> it. >>> >>> Best of luck, have a great weekend, and I think you are a wonderful >>> person and terrific friend! >>> >>> Marcie >>> -----Original Message----- >>> From: C.M. Houtz <ho...@ptd.net> >>> To: cmlhope <cml...@googlegroups.com> >>> Sent: Fri, Jul 12, 2013 10:08 pm >>> Subject: Re: [CMLHope] >>> >>> * Hi Marcie* >>> * I also wear a wig when I go out, and at times around the >>> house, but don't cook with one, and, usually, don't wear one around close >>> friends. My hair is a mass of fuzz and I do have a gal that comes to my >>> house and trims it every 6 weeks, but there isn't much to take off...Mostly >>> in the back. My eyelashes are gone, and my eyebrows thinning a lot. No, >>> most people don't understand how we feel, and on here, we can share these >>> things. I have a friend....who told me once that if I'd take long walks it >>> would be good for me. Well, I'm sure that it would, and I would love to be >>> doing that, but my legs won't , so I'm stuck in my jazzy (elec chair) most >>> of the time. I still can manage some with a walker, but it's getting to >>> the point where I have to have a transport chair...and someone to push it >>> when I go out. That makes it difficult for me to attend things with my >>> friends, etc. My arms don't work well either...about the same as my legs. >>> I can't lift my arms, especially the left one without a lot of pain. I do >>> what I can do, but, unless you have these health issues, you don't >>> understand that it isn't something that we choose to have. My friend meant >>> well, but just doesn't get it. Most of my very dear close friends have >>> suffered from some type of Cancer. They understand much better. I love >>> turbans, but have trouble putting them on and keeping them on. I think >>> they look neat. I wouldn't wear them out, but around the house I would. >>> I've never tried to bake with my wig on, but will think about it now that >>> you've warned me. Mostly, I just laugh at how I look as I can't do much >>> about it. Tasigna has left my skin so dry and wearing makeup just doesn't >>> work. Oh well, it is what it is.....right? We just do the best that we >>> can. * >>> ** >>> * My oncologist is going to be upset as I didn't get the results of the >>> biopsy yet and I must see him on Monday. He's such a love, and would hate >>> to ever change doctors. You don't find doctors that call you when they >>> need to talk to you (they have their staff do that), but since all of this >>> liver stuff has come up, he calls me often. I also can call him and >>> actually get to talk to him. I am truly a lucky lady.* >>> ** >>> *You take care of yourself, and I'm so glad that we can share things >>> with one another. * >>> *Many hugs,* >>> *Millie* >>> -- >>> -- >>> [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 cml...@googlegroups.com >>> To unsubscribe from this group, send email to >>> cmlhope-u...@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+u...@googlegroups.com. >>> 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 cml...@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-u...@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+u...@googlegroups.com. >> 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 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.
