Hi Marty: I'm sure I speak for all of us when I say that I, too, wish there had been a TKI when you were diagnosed. But being the warrior that you are, you have such a positive attitude. Plus, we all feel the love and compassion you constantly extend.
Do you know how Zavie set up the conference calls? I'd love to start that up but don't know how. I intend to find out because I think it would be fantastic if our group could have a conference call at least once or twice a month. Take good care. Much love and 18s, Marcie -----Original Message----- From: Marty Gartenberg <[email protected]> To: cmlhope <[email protected]> Sent: Sun, Jul 14, 2013 8:05 am Subject: Re: [CMLHope] Hi Marcie and everyone else. What else can I say about having to go through life having CML? Well, there is actually a lot that I can say about having CML. So, let me start... You have to remember having and living with CML is no longer a "death sentence" as it once was. In 1998 when I was first diagnosed it was. Little did I know that one day there would be something that there would be able to take like Gleevec or any other TKI that would be able to give me my life back instead of having to go through a bone marrow transplant and having to live in a very small 5 by 9 plastic bubble in a hospital for seven months not knowing if I would live or die. I am not even going to go through what I went through because that would be counter productive for everyone. Even though, I suffered greatly with many of the symptoms you describe. Even so I had the upper hand because of how I was able to train my mind to be able to overcome just about everything that I was going through at the time. My memory loss was so bad that while I was trying to speak a sentence I was unable to remember the next words in that sentence while I was talking. Talking about how frustrating that was is very difficult to describe. And I was only 45 years old at the time Even now, I have kidney failure but I simply choose to deal with what I have knowing that no matter what I may be going through I just have to deal with it and simply try to live my life as best as I can, which is what I try and do. So with that said I want all of you to realize that no matter what you might be going through your still alive and able to keep it that way until something better comes along. What I mean is that with all of the recent advances that have come along, being able to deal with your disease is now your chance for living your life until something better comes along like a cure. And there is no doubt in my mind that it will come along. So I leave you with my two numbers that represent life. 18's Marty On Sun, Jul 14, 2013 at 12:11 AM, Richard H <[email protected]> wrote: 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. 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