Well, being that your having a party in Chicago at Northwestern I'll be their June 1, 2016. We can all meet together and party the night away. greenie In a message dated 9/29/2015 1:35:01 P.M. Eastern Daylight Time, cmlhope@googlegroups.com writes:
We are only two hours from Chicago so we don't spend the night, but many thanks! How far are you from downtown? Could you private msg me yr. address? Sent from my Sprint phone ------ Original message------ From: bkbarney via CMLHope Date: Tue, Sep 29, 2015 10:09 AM To: _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) ; Subject:Re: [CMLHope] to Beth I would love to see you Susan. What is your timing? do you need a place to stay while you are here? Let me know! I definitely want to see you. From when to when will you be here? Thanks. Beth -----Original Message----- From: 'Susan Zimmerman' via CMLHope _>_ (mailto:<cmlhope@googlegroups.com) To: cmlhope _>_ (mailto:<cmlhope@googlegroups.com) Sent: Mon, Sep 28, 2015 3:07 pm Subject: Re: [CMLHope] to Beth Dear Beth again, I looked again and we come to Northwestern on Oct. 22nd. That's a Thursday. Let me know! Sent from my Sprint phone ------ Original message------ From: 'Susan Zimmerman' via CMLHope Date: Mon, Sep 28, 2015 4:01 PM To: _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) ; Subject:Re: [CMLHope] New results Dear Beth, Sorry, I don't know what happened to September, but here i am a month later seeing your response to my response...lol Are you still having to wear compression bandages??? I am so sorry. We come this Thursday to Chicago....I know you are near. Any chance we might get together for some mutual uplift? Blessings, Susan F. Zimmerman -----Original Message----- From: bkbarney via CMLHope _>_ (mailto:<cmlhope@googlegroups.com) To: cmlhope _>_ (mailto:<cmlhope@googlegroups.com) Sent: Wed, Aug 26, 2015 8:35 pm Subject: Re: [CMLHope] New results Dear Marcie, and Susan, Thanks for the kind words and prayers, much appreciated. I loved Paris's picture!!! what a cutie! I did try bosulif, for 2 months, cancer walked right through it and grew. It is the only TKI that did not work for me, all the others do but I have significant side effects.. while I am still working through the wall that I hit, I am uplifted by all the this group. I cannot thank each one of you that responded to me, enough for taking the time and connecting. It has been a a life line during a difficult patch. much love, Beth -----Original Message----- From: 'Susan Zimmerman' via CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > Sent: Mon, Aug 24, 2015 11:37 pm Subject: Re: [CMLHope] New results Dear Beth, I feel terrible about your lymphedema and certainly understand the misery when people stare and are rude. Please remember you are so beautiful inside and out and we are all pulling for you. You have been a MAJOR inspiration to me and so many others on here. Always a kind word to everyone. I am hoping you might have your doc think about bosulif for you. Everyone is different but sprycel seems to have more side effects than the others. We are all wishing for a complete turnaround for you!!! Keep your thoughts on things above and He will be there for you, too! Much love and prayers, Susan Z. P.s. This is my dog Paris wishing you the best! Sent from my Sprint phone ------ Original message------ From: margood18 via CMLHope Date: Mon, Aug 24, 2015 2:15 PM To: _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) ; Subject:Re: [CMLHope] New results Beth, I'm so sorry you are having such a difficult time. I knew that things were not easy for you but I did not realize just how tough. I pray, too, that new drugs will come on the market to alleviate the terrible side effects so many experience. I'm keeping you in my thoughts and prayers. Marcie -----Original Message----- From: bkbarney via CMLHope _>_ (mailto:<cmlhope@googlegroups.com) To: cmlhope _>_ (mailto:<cmlhope@googlegroups.com) Sent: Mon, Aug 24, 2015 12:23 pm Subject: Re: [CMLHope] New results Dear Joyce, Thanks so much for your reply. I apologize for not responding sooner. I have not been feeling great. I go up and down, undetectable and showing but with very low numbers....what is considered a major molecular remission...with CML testing positive. My struggles have always been the side effects and y body's capacity to tolerate the drugs. They do work for me which is great! this past year, post a botched lower back surgery and the subsequent second surgery to correct the fist one..seemed to erupt something in me and I am struggling with significant lymphedema/lipoedema. So, I am wearing compression garments, on legs, arms and torso except when I _sleep.it_ (http://sleep.it/) 's been debilitating in terms of movement..There is also no cure, like CL, just management...I don't know how this happened but it's here and I have to learn to live with it and manage it.while so many others have it so much worse, I try to stay positive, and be forward looking, with gratitude for what I do have, but this is taking a toll on my spirit. It feels lonely and isolating. People stare at you. it can be a cruel world. All I want is to feel well and strong in my body...I am doing everything I know to do.. If anyone here has had this type of reaction from taking a TKI, specifically sprycel..please let me know. It is clear, from my constantly elevated CPK which is rising, and the lack of healthy collagen and muscle building capacity in my body that sprycel is inhibiting more than the protein that causes CML. I am hopeful for new drugs that will be developed in the future that might work better for me. I miss everyone and send love and 18's to all of you..big group hug!!! Beth -----Original Message----- From: Joyce Mesnarich < _joyway@htc.net_ (mailto:joy...@htc.net) > To: cmlhope < _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > Sent: Sat, Jul 25, 2015 12:35 pm Subject: Re: [CMLHope] New results -- -- [CMLHope] A support group of _http://cmlhope.com_ (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+unsubscribe@googlegroups.com_ (mailto:cmlhope+unsubscr...@googlegroups.com) . For more options, visit https://groups.google.com/d/optout. -- -- [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/d/optout.
