Hi Millie: I'm so sorry to hear about your muscle pain. I know how much you love to us your hands for cooking and knitting. I get bad muscle cramps and bone pain and I do have pain killers but I try to us them only when absolutely necessary. If only we could wave a magic wand and make all of this disappear.
Our home was not damaged from the storms and we are very grateful for that. Now if we can get really warm and sunny weather we will be happy. Take good care, as I know you do, and God bless you for your strength and loving kindness to all of us. 18s and hugs, Marcie -----Original Message----- From: C.M. Houtz <[email protected]> To: cmlhope <[email protected]> Sent: Fri, May 16, 2014 1:47 am Subject: Re: [CMLHope] how much sprycel susan Hi Marcie, Sorry that you've had pneumonia, but glad that you're doing okay at present. We are all experiences different things, and most aren't wonderful, but we're still Alive, and that's what matters. Marty is not doing well. He's having tests run as he needs to get back on the list for a kidney transplant and they have to see if the rest of his body is doing well enough to consider one. I'm not well either. My arms just don't want to work, and that is causing me a lot of pain. I am experiencing so much muscle pain in my arms, but only from the elbows up to the shoulders, across that shoulders and neck, and I try to get past it all. I am living on pain medication, which I hate, but it is what it is. Some how I'm going to come through it. Like I said, we all have our issues, but try to go on like nothing is happening. Were you affected by the floods/rain, etc. that they've had in the Baltimore area. I think of you every time the news says how bad it was, or is. Finally, it looks like Spring is arriving in PA. and I pray it will stay. We all will feel a lot better when the cold days are over. I am heading to bed now. I hope that you will feel better and can continue to write and do what is making you happy. I always enjoy reading what you write, and am glad that you're keeping up with the site. Love, hugs, prayers, and lots of Marty's 18's.. Millie ----- Original Message ----- From: 'Marcie Goodman' via CMLHope To: [email protected] Sent: Thursday, May 15, 2014 11:47 PM Subject: Re: [CMLHope] how much sprycel susan So glad to hear that Marty is out of the hospital, Millie is doing her knitting and cooking, Susan isn't experiencing side effects, Greenie's results are excellent, Pat Elliott is taking charge of so many issues and Richard and Jeanie seem to be upbeat. I remember that Beth was having a tough time and I hope that she is feeling better. I seem to have less time to stay up to date but I keep all of you in my prayers. Just coming off a bout of pneumonia and back to work full time. My boss is up for re-election and has a primary June 24th so it is stressful. Then there is the general election November 4th. My husband and I both work by political appointment and that ratchets up all kinds of anxiety, especially because of the health care benefits which are excellent. My last BCR ABL was undetected and I'm grateful that Gleevec continues to work for me. Best wishes to all on this site for a happy and healthy spring. I hope others who participate understand that I pray for each and every CMLer. Just know some better than others but love to all. Marcie Sent from my iPad On May 13, 2014, at 7:47 PM, "'Susan Zimmerman' via CMLHope" <[email protected]> wrote: Thanks Jeanie, All your adventures finally paid off. I quit my onc locally because he had never heard of bosutinib or posatinib, said I was mixed up on my medications. That told me I was not getting the best care possible. Sure glad your nurse put in a good word for you. We have to be pro-active! I wrote an e-mail to Dr. Pinilla at Moffitt, my former onc. He told me to please go to a university, whether it be Northwestern or Univ. of Michigan where he recommended docs at both. So I went with the Chicago one, as it is a little closer. So far been on 100 mg a day for a week now and no side effects yet. I do take it at breakfast. Thanks for the well wishes from all about being able to tolerate this last one! Wishing you all the best of 18's and good health, Susan "Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you." Hab. 1:5 -----Original Message----- From: ICANDOALLTTC via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Tue, May 13, 2014 6:34 pm Subject: [CMLHope] how much sprycel susan Hi Susan and so good to hear from you. I remember I had to take my Gleevec with a large meal so I planned large breakfast and it worked for me. When I started on Sprycel I was in the hospital as my platelets and wbc had gone way up. I was having my blood cleaned daily, but it would to right back up after they cleansed it. My onc at the time had me on a high dose of Gleevec (which had already quit working for me, and some other drugs. I kept asking him for Sprycel, but he said he wasn't familiar with it. Finally a nurse came in that had worked for Moffitt Cancer Center and asked me why I wasn't on Sprycel; I told her and she must have talked to my onc because he came in and told me he was putting me on Sprycel. The hospital I was in acted like they couldn't get it so he gave my son a prescription and he filled it at Walgreens. He started me on 150 mgs daily in the beginning and sent me home. After a few BMA I was put on 100 mgs daily and have been on that dose ever since, and yes it put me in remission after only a few months. I use to have the EKG quite often but never had a problem so we stopped them. I do have them yearly. I go to my onc now every 6 months, and so far so good. Keep us informed on your journey with the new meds. Blessings Jeanie<3 In a message dated 5/8/2014 6:49:45 P.M. Eastern Daylight Time, [email protected] writes: Thanks Jeanie for your concern. I must take the med with food, which will change my eating habits, as I usually skip breakfast. So now, a breakfast, (which is good for me) with it, and no problems so far at all. With only taking 1/5 of the regular dose, I shouldn't have any problems! I forgot to tell you guys that the ekg showed abnormality of my heart, (prolongation). I'm just a little over the designated normal count, but over nonetheless. Now they must do an ekg every time I go to make sure it doesn't change. (ugh) Did the sprycel put you in remission on the 100 mg a day? What was your dosage and what is it now? I hope my numbers will go down without increasing the dose. 18's, Susan F. Zimmerman -----Original Message----- From: ICANDOALLTTC via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Thu, May 8, 2014 6:19 pm Subject: Re: [CMLHope] No Updates? Hi Susan, please let us know how you do on this new meds. I am on Sprycel and I remember when I started on it they put me on 3 50mgs pills. It wasn't long before they downed it to 2 pills daily. Do you have to take it with water or food? Sprycel put me in remission and was the first drug to do so; I was on Gleevec and Tasi. My prayers are with you on your journey. Blessings, Jeanie<3 In a message dated 5/7/2014 9:50:52 P.M. Eastern Daylight Time, [email protected] writes: Hey everyone, I started on bosutinib yesterday at 100 mg. Please keep me in your prayers that this medicine will work and I can stay on it without any stroke symptoms, like has happened with all the rest of the drugs. I am going to Chicago (Northwestern) at least once a month now, next again for a two-week follow-up. It's a one hour and forty minute drive with no slow-downs. I make it a fun day. Last Wednesday my husband made it a business trip and took me along, dropped me off and met again later. It's easier on my nerves when driving downtown! Dr. Altman wants to check my reaction to the lowest dose in two weeks. I'm sure it will be fine...... They also did an EKG on me and it showed that I do have prolongation between heartbeats, just a tad above normal. This could be why I'm so devastatingly tired all the time! I do not want to develop anything worse from the prolongation, so they will give me an EKG each time I go for awhile. Got to do some homework on this. Sure have loved and enjoyed being off all medication for 7 whole years. Dr. Altman says I'm really "special" to have lasted this long. Don't know by that if she means "crazy" or idiotic, or what....it is what it is! Marty, I am standing with everyone to pray you will receive a new kidney soon...and Millie, keep pressing the docs about why all these pains are gripping you and what can they do about it. We have to be pro-active, although I know just getting through the day sometimes is all the "pro-active" we can be!!! Beth, praying for you, too! 18's and hang in there, Susan Zimmerman -----Original Message----- From: C.M. Houtz <[email protected]> To: cmlhope <[email protected]> Sent: Tue, May 6, 2014 11:54 pm Subject: Re: [CMLHope] No Updates? Hi Richard, I've been thinking the same thing. I hope that it means all if okay. I have been having a lot of Arthritis problems and can hardly move my arms. It hurts to type a lot. from the elbow down I'm fine, but from the elbow up it's so painful to lift my arms or do anything that requires reaching, lifting, etc. What a mess I am.. I try to cope with it, and do some exercises that help, but if it hurts to do them, they tell me not to force it.. Say prayers for Marty, and Beth as I know they're having their own set of problems. If you have any left over, pray that my arms will start working well enough for me to accomplish something. Marty has a weeks worth of tests, doctors, etc. to deal with, and Debbie has her back issues. I know that this is a CML site, but it seems like other things get in the way that we deal with. I do hope all is well with you. I'll keep watching for e-mails from the group, and hope that they will all be good news. Jeanie got kicked off of the Goggle site, and I can't remember why. She was trying to change things and it took her down. I don't think she knows how to get back on. I still e-mail her and we talk that way, but she was a huge asset to our group. I forward her messages to you guys, but she needs to get hooked up directly. I sure don't want to loose touch with anyone. Talk to you soon. Love, Hope, and Prayers, Millie ----- Original Message ----- From: Richard H To: [email protected] Sent: Tuesday, May 06, 2014 11:40 PM Subject: [CMLHope] No Updates? I haven't seen any new or responses for almost a week. I hope everyone is okay and just busy with life. Richard H. -- -- [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/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 [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/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 [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/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 [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/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 [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/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 [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/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 [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/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 [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/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 [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/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 [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/d/optout.
