Hi Susan, Reading your story, even though I already know it, is just awe inspiring! You truly are a walking miracle. May God continue to bless you for many, many years to come.
Hugs, Marcie Sent from my iPad > On Jul 20, 2014, at 8:44 PM, "'Susan Zimmerman' via CMLHope" > <[email protected]> wrote: > > 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]. >> 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.
