Hi Susan, Here is some research that i did.
For everything that seems to be "bad" there is also something that comes out of it that is good, or if you will, a redeeming factor. Please pay attention to the last several words, and this is what i truly wish for you. And yes we all are related to blood... 18's, I have gotten close with all of you in these past years... Marty Cavernous malformations are abnormally formed blood vessels that have the appearance of a small mulberry. Cavernous malformations can occur anywhere in the body, but usually only create problems in the brain or spinal cord. These malformations may be hereditary or they may occur on their own. These malformations may leak blood, leading to bleeding in the brain (hemorrhage). This can cause neurological symptoms, depending on the location of your cavernous malformation in your nervous system. Symptoms may include weakness, numbness, difficulty speaking, difficulty understanding others, unsteadiness, vision changes, or severe headache. Seizures also can occur. Repeat hemorrhages can occur soon after your initial hemorrhage or much later,* or a repeat hemorrhage may never occur.* - On Tue, Oct 3, 2017 at 6:29 PM, 'Susan Zimmerman' via CMLHope < [email protected]> wrote: > Hi All, > Jeannie, in response to your question. I was on gleevec 400 mg for 2 > yrs...then my face and arm went numb while I was in a doc's office- taking > someone else for their appt. > > I was ambulanced across the street to the hospital. After many visits to > neurosurgeons, they could only come up with cavernous malformations on my > brain. They should not cause strokes. It was not the blood clot type of > stroke, btw. > > At that point in 2007 I went off all meds for cml. I decided better to let > numbers slowly rise than die or drool from strokes. So thank God my vision > returned to normal and hearing after 3 mos. I did have another stroke in > 2010 without being on a tki. I was exercising at the time. I stayed off > meds for 7 years. > > They tell me at Northwestern I have pinpoints of blood in all parts of my > brain. They are just waiting to burst. I must tell you i tried all of the > tki's except ponatinib and they all gave symptoms of stroke. > > In bcr/abl tests i stayed below 10 for those yrs. Until 2014 when I agreed > to get on bosulif at only 100 mg. a day instead of standard 400 mg. All > went fine and I was blessed to stay undetectable. Then in Dec. Of 2015 my > numbers jumped just a bit. Still under 1.0 but I agreed to go up to 200mg a > day. 10 days later I had another stroke. No major damage remained. I stayed > off bosulif for 8 months. Now I take 100mg every other day. So far so good! > > Sorry for such a long letter. Thanks to my blood buddies for all yr. > prayers. You do have mine! > Jeanie, sure hope the elbow adjustment will right all the wrongs! Another > gentleman wrote that this corrected his problem. We hope!!! You always have > a great attitude, Jeanie. > > 18's > > Susan f. > ------------------------------ > On Monday, October 2, 2017 'Jeanie' via CMLHope <[email protected]> > wrote: > Hi Susan and thanks > Can you explain how you went through your stroke? > Thank you > ❤️❤️❤️❤️ > > My Motto: > Faith and Pills > With Love > 🐠18's > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/2015 > Doctor Balducci Moffitt Cancer Center > > On Sep 27, 2017, at 9:57 AM, 'Susan Zimmerman' via CMLHope < > [email protected]> wrote: > > Sorry Jeanie, > I have numbness in left side due to a stroke but never what you are > describing. Hope somebody else can help! Meanwhile you are in my thoughts > and prayers, as is everybody else in our group! > 18's, > Susan Z. > > Susan F. Zimmerman > "All who humble themselves before the Lord shall be given every blessing, > and shall have wonderful peace." Ps.37:11 > > > ------------------------------ > On Wednesday, September 27, 2017 'Jeanie' via CMLHope < > [email protected]> wrote: > > Hi all > I've been having anew side effect from something and was wondering if > anyone else has it too. I wake up with my right hand hurting real bad-being > numb and especially painful in pinkie finger. Now the whole hand hurts. Any > ideas? > > My Motto: > Faith and Pills > With Love > 🐠18's > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/2015 > Doctor Balducci Moffitt Cancer Center > > -- > -- > [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 CMLHope-unsubscribe@ > googlegroups.com > 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 CMLHope-unsubscribe@ > googlegroups.com > 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 CMLHope-unsubscribe@ > googlegroups.com > 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 CMLHope-unsubscribe@ > googlegroups.com > 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.
