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.
