Hi Maria,
Yes, I am now on bosutinib/bosulif. I did read your post about switching, and I kind of hope your docs decide to do it! I've heard so many stories on this site about problems with sprycel. I took sprycel myself for fifteen days. I never went into my background with you, since you were on sprycel. So here's a brief synopsis: Dx'd Feb. 14, 2005 in Orlando, FL two weeks on hydroxurea Began gleevec 400 mg and never missed a day for 2 yrs - complete with all the side effects. November, 2005 complete remission sustained until March 2007 March 2007 had a brain bleed, just short of being called a stroke. (only 1% have brain bleeds, they say) They found at that time that I had had another brain bleed somewhere in the last year or so, not as significant. I stopped the gleevec, went through getting into clinical trial for tasigna at MD Anderson, Orlando branch Two weeks from brain bleed in March 2007 took 1/2 dose of tasigna, had an instant severe eye bleed. Stopped tasigna against the recommendations of the doctors. They were not convinced the brain bleed was caused by the cml medicine. I was convinced. (Not wanting another brain bleed.) Went three years without any medicine for cml......tested first every 2 mos, then six months, always in cellular remission, continuing to slowly come out of molecular remission. Went from 9 bcr/abl to 15 to 23. Still CBC's are normal. Diagnosed after much investigation of brain thru neurologists, hematologists, and oncologists, with cavernous malformations being the only explanation. (I still think it was exacerbated by the former medicine). March of 2010 had a complete stroke, rushed to E.R. Thank goodness I regained my eyesight and use of left arm and leg. Continued to have blood checkups, with CBC always showing normal, but bcr/abl continuing to rise. Held the bcr/abl number of 23 for over a year. Was watching all the medicines coming out, etc. 2013 summer, began sprycel with a local oncologist in South Bend, IN. Had moved back to South Bend, IN in 2010 Sept. Was on sprycel for fifteen days and on that fifteenth day had my eye freeze as if I was having a reoccurence of the stroke where my eye had to be covered with a patch for three months. Immediately stopped the sprycel. Local onc. did not care whether I stayed on it or not. Continued monitoring blood counts. As it continued to increase, I decided to contact Dr. Javier Pinilla from Moffitt Cancer Center in Tampa. (my former onc who I loved). He recommended Dr. Jessica Altman at Northwestern in Chicago for me. July of 2013 began at Northwestern with Dr. Altman just checking blood counts for about nine months. She talked me into trying bosutinib so I did not take the risk of going into blast phase. Believe it or not, before the bosutinib even was started, my bcr/abl count went from 23 down to 9 with no explanation! Even Dr. Altman said it was a miracle with no other explanation. I thank God for all your prayers and the prayers of my intercessors. After 7 yrs and 2 mos without any medication: (I am a walking miracle) No one I know has been off it that long without problems!!! Began bosutinib April 30, 2014. The last bcr/abl test showed that after one month I went from 9 to 5.86!!!! THIS ON the lowest dose of bosutinib, only 100 mg instead of 500 mg! I agreed to increase the dosage if the numbers did not improve. So far I have not had to increase!!! I owe it all to our dear God and the prayers of you guys and my friends and family. I have had a few issues since beginning bosutinib. One, my blood pressure has gone up which had me start on that medication. (ugh) Two, I've had some nausea probably due to the five prescriptions of different medications I am taking. Dr. Altman tells me there is no indication that bosutinib causes high blood pressure. So now on a nausea med, a high blood pressure med, two diabetic meds, and a small dosage of antidepressant. It's all good!!! Sorry this is so long. Hope this helps, and know that God is sure in your corner as well, Maria!!! You can private message me anytime by using the listing of my e-mail up above. We are all watched over by our Sovereign Lord, and He knows all our triumphs and troubles. I reiterate a great thought I've said before for all to reflect upon: We can either TRUST HIM or worry, but we can't do both!!!! Great love to you all and 18's, Susan F. Zimmerman -----Original Message----- From: 'Marcie Goodman' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Sun, Jul 20, 2014 8:49 am Subject: Re: [CMLHope] Sprycel and bosulif Hi Maria: Susan Zimmerman on this site is now on bosulif, I think. She is a sweetheart and I'm sure when she sees your post she will respond. Wish I could be of more help but I've only been on Gleevec. Hugs, Marcie Sent from my iPhone On Jul 20, 2014, at 3:25 AM, [email protected] wrote: Hi guys!!!! I hope that all is well with you!!!! I have some concerns, and I am hoping to share them with you and perhaps get some answers. I might eventually be switche fro Sprycel to Bosulif. Have any of you any experience with this kind of change????? Maria :) -- -- [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]. 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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.
