Hi Carolyn K, So sorry to hear about your PE. I have dreaded that ever since I have been on Sprycel. I take 100 mgs daily; my onc doesn't want me to cut down. Do you think having a sore jaw could do with PE? I hope you get better quick! Blessings, Jeanie<3 In a message dated 9/12/2014 3:23:41 P.M. Eastern Daylight Time, [email protected] writes:
Hi CMLers I am on Sprycel only 20 mg bid and have been mostly undectable since 2009. Every once in a there will be a small trace. My only side effect is PE. I have had to have my plural tapped about 5 times now. The doctor hates to take me off Sprycel as it is a miracle drug. The tapping is just to give me immediate relief as the water comes back within a week. They usually can get about 3-4 liters off of both lungs. I am getting plenty of oxygen and the onocologist is working with a pulmonary dr. I cannot take Gleevec as that makes my liver react. I actually had Gleevec induced hepatitis. My Onocologist is afraid to try a different drug as they all have side effects. So I just take is on day at a time. My last tapping was in March 2014, so I have had a good six month run. I am thankful for everyday and I guess it is what it is. Carolyn K ---- ICANDOALLTTC via CMLHope <[email protected]> wrote: > 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. > 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. > 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]_ > (mailto:[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. 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