Hey Jeff, Thanks so much for answering. I was also fighting high liver enzymes when only on 100 mg, but the last blood test showed that the enzymes went way back down! I guess my body got used to it. I was thrilled. I'm hoping you can go on an even lower dose as time goes on. My doctor doesn't dare suggest I go higher, as I am making sure I have no bleeding in the brain issues because of it. All the other drugs caused a problem in that area. They want the numbers to go down as fast as possible with the higher dosages. Mine was .35 after only four months, so I think that's fast enough! I am so blessed! Blessings to you, also, and everyone else who is reading this!
Susan -----Original Message----- From: Jeff J. Johnson <[email protected]> To: cmlhope <[email protected]> Sent: Wed, Sep 17, 2014 7:44 am Subject: [CMLHope] bosulif Hi Susan, Sorry for delay in getting back to you. With bosulif I had stomach issues, but the main reason I had to go off was the liver enzymes numbers had gone up. Was off for 2 weeks now back on a lower dose, 300mg, instead of 400mg. Stomach side effects were nasty first couple days but getting much better. I will see doctor in 3 weeks and hopefully things will be ok. Had to go off Sprycel due to prolonged PE, just kept coming back! Jeff From: [email protected] [mailto:[email protected]] Sent: September-09-14 6:22 PM To: [email protected] Subject: Re: [CMLHope] Sprycel side effects 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]> 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 > ------------------------------------------------- > > 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. 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