Hi Lenda and thanks so much for that info on the jaw. I hadn't found anyone else that had it and was so sure it was from the Sprycel. I had the sinus headaches ever since I have been on the drug. I just woke up one morning and my jaw was killing me. Yes painful to chew and worse in the evening and morning. I have been fighting this for about 2 weeks now. How long did yours last? Isn't it strange how one person can make such a difference in our lives. Thanks so much again! Blessings, Jeanie<3 In a message dated 9/12/2014 1:47:57 P.M. Eastern Daylight Time, [email protected] writes:
I also had a lot of jaw pain as well as chronic sinus infections on Sprycel. At the time they did not know that Sprycel was causing them. I ended up having sinus surgery, and my sinus' ended up growing back in less than 8 weeks. The ENT wanted to do surgery again, but I did not want to go through that again! It was 6-9 months later before they had several cases of the sinus issue in patients taking Sprycel. The jaw thing was also bad. My dentist told me I was clenching my teeth when I was sleeping. I had never done that before, but I could barely chew or talk the pain was so bad. My dentist ended up making a guard I put in my mouth at night so I couldn't clench my teeth any longer. I went off Sprycel August 1, 2011 due to all the side effects I was having. I had three years of remission off the drug!!!! Unfortunately my numbers went back up (a lot) August 2014, now I have to decide if I want to go back on oral chemo or have a bone morrow transplant. My choice is neither, but I guess I will have to talk this through with my family and doctor. CML is not fun, but we have to keep on fighting and deal with what we have been given. Hopefully this information will be of help to someone else that are experiencing some of the side effects from Sprycel. Lenda ____________________________________ From: "cmlhope" <[email protected]> To: "cmlhope" <[email protected]> Sent: Friday, September 12, 2014 10:49:30 AM Subject: Re: [CMLHope] Sprycel side effects Hi all and glad to have everyone's input on this PE. I told my onc a few months back that I was afraid of PE but he said that was the last thing I needed to worry about. Can't figure him out. I am on 100 mgs daily Sprycel. Seem to be doing good except I have developed painful jaw and right side of face. This could be another side effect of Sprycel. Hang in everyone; and get better. Blessings, Jeanie<3 In a message dated 9/9/2014 6:21:56 P.M. Eastern Daylight Time, [email protected] writes: Hi Jeff, I read with interest that you had to go off bosulif for a short time. What were your side effects? What dosage were you on? Very interested as I am also on it. Best wishes for your return to it this weekend! I am on 100 mg and having no real problems. At first my liver enzymes shot up, but they have returned to almost normal now. Thanks, Susan -----Original Message----- From: Jeff J Johnson <[email protected]> To: cmlhope <[email protected]> Sent: Tue, Sep 9, 2014 3:14 pm Subject: Re: [CMLHope] Sprycel side effects Hi Joyce, Seems scary but I was off sprycel for many weeks due to PE. But my numbers continued to be good 3.6 -3.9 log reduction. Sadly I'm off sprycel for good due to continued problems with PE. Was put on Bosulif for short time but off temporarily due to side effects. Hope to go back on the weekend after seeing doctor Friday. Best of luck to your husband. Your doctor is very highly respected. Have a great day. Jeff Sent from my iPhone. > On Sep 8, 2014, at 11:33 PM, Joyce Mesnarich <[email protected]_ (mailto:[email protected]) > wrote: > > Have been reading the reports of various CMLers having side effects from the various TKIs. Jut wanted to weigh in with my husband's latest experiences. He was short-winded and family doc ordered a chest X-ray which revealed some effusion. We reported this to Dr Talpaz (his CML specialist) and Dr T wanted him to have an echogram which we were able to do locally with his regular cardiologist. Dr T said to quit taking Sprycel immediately and not to continue until he and the cardio conferred. As of now, he will have another echo in a week to see if there is any change one way or the other. He has an appointment with Dr Talpaz in Michigan the middle of October and it sounds like they are going to have him stay off Sprycel until at least then. It's kind of scary being off the medication that you know is saving your life. But Dr T is not concerned. Don't know where this is going next. All part of the journey. Continue to pray for all the warriors out there. > Thank you for your input. > Joyce in IL > > -- > -- > [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 [email protected]_ (mailto:[email protected]) > To unsubscribe from this group, send email to [email protected]_ (mailto:[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]_ (mailto:[email protected]) . > For more options, visit https://groups.google.com/d/optout. > -- -- [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. 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