On Monday, July 15, 2013 7:36:53 AM UTC-5, Peter wrote: > > 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 <[email protected]> >>> To: cmlhope <[email protected]> >>> 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 <[email protected]> >>>> To: cmlhope <[email protected]> >>>> 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 [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. >>> >>> >>> >>
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