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 <javascript:>> > To: cmlhope <cml...@googlegroups.com <javascript:>> > 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 <javascript:> > To unsubscribe from this group, send email to > cmlhope-u...@googlegroups.com <javascript:> > 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 <javascript:>. > 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. 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