Hi Marcie, Yes I do know how Zavie had set up everything. I was a part of it. We used to use skype and would all meet up on Tuesday evening at 7:30 PM.
If only one person buys the multiparty part of it then everyone can get on at the same time and speak to each other, up to I believe six people at one time. I have been on skype for many years so if you or anyone would like to skype me then just go on and download skype and do a search for me. just put in my email address and it will find me and send me a message to include you into my contacts list. Once I see it I will then recognize you and we are all set. You will need a microphone and a web cam but not necessary it you just want to use voice over skype. 18's Marty On Sun, Jul 14, 2013 at 9:29 AM, <[email protected]> wrote: > 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. >>> To post to this group, send email to [email protected] >>> 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 <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<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. >> >> >> > > -- > -- > [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. > > > -- -- [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.
