Re: [CMLHope] Re: stroke

2016-01-03 Thread 'Susan Zimmerman' via CMLHope
Hi Jeanie,
I have had four previous strokes, all due to trying the four other meds that 
are out.  With gleevec I had two strokes while I was on it that were minor.  
The docs were not convinced the gleevec caused it, but I was!  Then 2 years 
after being off all drugs for cml, I had a major stroke which at first left my 
eye frozen, and damaged hearing, along with balance problems.  Thankfully, 
those things all went away after 3 months.  I am most blessed.  Then each other 
pill I tried, (all 3 others) I had a symptom of stroke almost immediately.  
(bad eye bleed, frozen eye like the big stroke).  They could only find 
cavernous malformations in my brain to lend itself to such easy bleeding.  
About 9 months ago I went back on the last drug, bosulif, because my numbers 
were getting pretty high after 7 yrs of no meds at all.  I started with 100 mg 
of bosulif, which is very low. The usual dose is 500 mg.  When my numbers went 
up just a little after being in remission, the docs suggested I go to 300 mg.  
I agreed only to 200 mg.  So this time, I had doubled my dosage, and 10 days 
later, had double vision and severe nausea all afternoon right when we were 
sharing Christmas with my son and whole family on the 26th.  I wasn't sure 
about it, I thought it might be all the sugar I ate, as I am diabetic.  So 
decided just to hit the bed for the evening so as not to ruin their visit.  
Kids left next day. Then on Wednesday, continuing the double vision somewhat, I 
vomited.  The docs had all said one more symptom get to the e.r., so I went.  
Sure enough, the ct scan showed 4 new blood spots in four different parts of my 
brain. (that was a new one, usually they were all in same place.)  Luckily very 
little was affected this time, halleluhiah!


Long ago the statistics used to be only 1% had brain bleeds, i.e. strokes from 
these medications.  I am one of the 1%.  Don't know if the figures have 
changed, but one thing I do know.  None of you need to worry about this 
happening to you.  My father died of a brain aneurysm, so apparently I'm prone 
to it.  But I know I'll only go when it's His timing, not my own!  I'll keep 
plugging and try to keep a joyful heart until then!  Definitely planning on 
enjoying my retirement.


18's and love,
Susan Z




-Original Message-
From: 'Icandoallttc' via CMLHope 
To: cmlhope 
Sent: Sun, Jan 3, 2016 1:24 pm
Subject: Re: [CMLHope] Re: stroke



Hi Susan,
Just wondering how you knew you were having a stroke??  The tkis say wash your 
hands after handling and these are going in out stomach!!! 
Keep strong and keep fighting!!
β€οΈπŸ’‹πŸ˜‡πŸŽΌ

My Motto: Faith and Pills
Jeanie 🐟🐟18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center


On Jan 3, 2016, at 1:00 PM, bkbarney via CMLHope  
wrote:



Susan, you are a strong and amazingly positive woman...I am so sorry this 
happened..but trust you will heal.I think it's so hard to know what to 
do..regarding dosages and changing meds.trust your own knowing about your 
body and your own knowing about what may work best for you..


Much love and healing energy... Beth



-Original Message-
From: 'Susan Zimmerman' via CMLHope 
To: cmlhope 
Sent: Wed, Dec 30, 2015 11:50 pm
Subject: Re: [CMLHope] Re: stroke



Dear all,
Just a note to say I'm in my local hospital. It did turn out to be a small 
stroke which started last Sat. In morning I will learn if 2nd cat svan showed 
the bleeding stopped. Prayers are appreciated. I am agitated w myself for 
agreeing to up the bosulif when my numbers increased just a little. If I had 
followed the doc's suggestion of an even higher dose I would be dead now. After 
10 days on 200 mg of bosulif, here comes another stroke! Regular dose is 500 
mg. I'm just weird. So now off all bosulif. Pray my numbers stay down for 
several months...dont need another one! God is in charge...Jeannie, without 
pills this time lol. You all mean so much to me. I'm feeling fine now. God 
bless and stay safe on new year's eve! Thanks for yr. prayers.
18's and love, Sz


Sent from my Sprint phone




-- Original message--
From: Myvety2k via CMLHope 
Date: Wed, Dec 30, 2015 3:34 PM
To: cmlhope@googlegroups.com;
Subject:Re: [CMLHope] Re: Merry Christmas and happy Hilidays




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Re: [CMLHope] Re: stroke

2016-01-03 Thread 'Susan Zimmerman' via CMLHope
Thank you so very much for all the well wishes!  It means a whole lot to me.  
Thanks Greenie, and Beth, and Jeannie and Marcie!!!  Sure wish we'd hear from 
Marty..  Does anyone have any contact with his family?


Greenie, I sure do feel safer at home for sure!  Now that I'm older, I am 
definitely not the "go" bug that I used to be. 


 I want to leave a legacy for my family of loving people really well and hoping 
they will see Christ in me.  I know you all feel the same way about not wasting 
time and enjoying every day.  When life becomes iffy, we value it far more, eh? 
 Every day is a gift and I hope I make it pleasant for someone else.  I can 
only do this if I pause before my every response instead of spewing out the 
first thing that comes in my head.  Sometimes that first thing is not so good, 
lol!


Enjoy 2016 as a marvelous gift to spread the good stuff, not the bad!  
18's and love,
SZ




-Original Message-
From: bkbarney via CMLHope 
To: cmlhope 
Sent: Sun, Jan 3, 2016 12:42 pm
Subject: Re: [CMLHope] Re: stroke


Susan,
 very happy you are out of the hospital...hope the new year ahead is full of 
joy, healing and renewed health for you...glad you are out of the hospital too. 
Please take good care...Love, and 18's Beth..


p.s. I was thinking the same thing about Marty..where are you Marty and how are 
you B



-Original Message-
From: Myvety2k via CMLHope 
To: cmlhope 
Sent: Sun, Jan 3, 2016 5:20 am
Subject: Re: [CMLHope] Re: stroke



SZ, theirs nothing like being in your own home, glad your out of the hospital 
it's safer to be at home.
 
greenie
 

In a message dated 1/2/2016 7:24:17 P.M. Eastern Standard Time, 
cmlhope@googlegroups.com writes:
  
  
  
Dear Angie, 
  


  
Hooray for 6 mos free of gleevec!  I'm so   hopeful I can stay off bosulif 
until I turn 65 next September without my   numbers going crazy.  I know you 
are thrilled to get your body back, lol!Thanks and you are right, what a 
way to end 2015!  So glad I got   out of hospital on the 31st, which made 
insurance so much easier for the   change in years.
  


  
All you blood buddies out there, best wishes to you   all and I lift you in my 
prayers whenever I hear about problems.  Anybody   heard from Marty lately?
  
It's been ages.
  


  
18's,
  
Susan Z

  
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[CMLHope] Marty are you there ??

2016-01-03 Thread 'Icandoallttc' via CMLHope
Hi Marty,
Just haven't heard from you and all of us are worried about you. 
Give us a note and let us know how you are. 
Love u so much β€οΈπŸ˜‡πŸ’‹πŸŽΌ

My Motto: Faith and Pills
Jeanie 🐟🐟18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

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Re: [CMLHope] Re: Happy New Year to all

2016-01-03 Thread 'Icandoallttc' via CMLHope
Hi Beth,
So happy you could be off for a while at least and wish you good luck on going 
back on meds.  
How often do you have your blood checked now?
Just take one day at a time and try to do a little exercise if you can. 
Good luckπŸ’•πŸ’•πŸ˜‡πŸ˜‡πŸ’—

My Motto: Faith and Pills
Jeanie 🐟🐟18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 3, 2016, at 12:48 PM, bkbarney via CMLHope  
> wrote:
> 
> Dear Jeanie and everyone...,
> went back on my chemo on the first...cells showing again after 5 weeks 
> offso uptaking now...doing o.k. except for the usual headaches which go 
> away after a few weeks...also trying steroids to lower the cpk . Working on 
> holistic ways to manage pain to have a better quality of life in the new year 
> and hopefully be better able to be active and move more...my goal..
> 
> 
> my best to all..hope it is a truly great year ahead...glad we can share our 
> journeys together..
> my best, hug, love, 18'sbEth
> 
> 
> -Original Message-
> From: Richard H 
> To: CMLHope 
> Cc: icandoallttc 
> Sent: Fri, Jan 1, 2016 11:25 pm
> Subject: [CMLHope] Re: Happy New Year to all
> 
> Happy New Year!  Yeah for the new meds working.  I hope the pain goes away 
> soon.  I am glad you enjoy working on your gemology.  I have worked on parts 
> of my family from my Dad and Sister-in-law expanding it to try to satisfy a 
> question asked at my grandmothers bedside near the end of her life.  She only 
> answered "Little Indian girls and boys play.  With the computer, I have 
> expanded my grandparents families back to England, Scotland, and Ireland 
> proving most stories absolutely correct.  The Indian story is probably 
> correct, I have proven body features are viable.  Recently a 100% American 
> Indian lady was visiting with me and asked about a foot feature I thought was 
> from wearing tight pointed cowboy boots.  She told me to check the feature 
> out at the Indian genealogy site, and what I have is a dominant Indian 
> feature.  To prove this point I need to get a DNA test from Ancestry. com, as 
> they have many early Americans that simply incorporated into their family.  
> 
> 18's and may 2016 be a climb to the best we can be!!
> 
> Richard H. 
> 
>> On Monday, December 28, 2015 at 7:05:39 AM UTC-6, Icandoallttc wrote:
>> Happy New Year!!! May the year bring you healing and love. 
>> My new chemo is working so far.  The pain in my side won't let up but I am 
>> dealing with it.  I am going to start a new herb garden soon.   I am working 
>> in my genealogy when I feel like it. 
>> Let the sun shine in your heart and keep fighting!!! 
>> How are you Beth?  Are you still off your meds? 
>> Can everyone send a note and tell us how you are when you get the chance? 
>> Thanks. 
>> β€οΈπŸ˜‡πŸŽΌπŸŽΌπŸŽΌπŸŽΆπŸŽΆ 
>> 
>> My Motto: Faith and Pills 
>> Jeanie 🐟🐟18,s 
>> Dx 1/2004. CML Leukemia 
>> Started Gleevec 2/2004 
>> Started Tasigna  9/2009 
>> Started Sprycel 11/2009 
>> Started Ponatinib January 2015 
>> Dr Balducci Moffitt Cancer Center
> 
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Re: [CMLHope] Re: stroke

2016-01-03 Thread 'Icandoallttc' via CMLHope
Hi Susan,
Just wondering how you knew you were having a stroke??  The tkis say wash your 
hands after handling and these are going in out stomach!!! 
Keep strong and keep fighting!!
β€οΈπŸ’‹πŸ˜‡πŸŽΌ

My Motto: Faith and Pills
Jeanie 🐟🐟18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 3, 2016, at 1:00 PM, bkbarney via CMLHope  
> wrote:
> 
> Susan, you are a strong and amazingly positive woman...I am so sorry this 
> happened..but trust you will heal.I think it's so hard to know what to 
> do..regarding dosages and changing meds.trust your own knowing about your 
> body and your own knowing about what may work best for you..
> 
> Much love and healing energy... Beth
> 
> 
> -Original Message-
> From: 'Susan Zimmerman' via CMLHope 
> To: cmlhope 
> Sent: Wed, Dec 30, 2015 11:50 pm
> Subject: Re: [CMLHope] Re: stroke
> 
> Dear all,
> Just a note to say I'm in my local hospital. It did turn out to be a small 
> stroke which started last Sat. In morning I will learn if 2nd cat svan showed 
> the bleeding stopped. Prayers are appreciated. I am agitated w myself for 
> agreeing to up the bosulif when my numbers increased just a little. If I had 
> followed the doc's suggestion of an even higher dose I would be dead now. 
> After 10 days on 200 mg of bosulif, here comes another stroke! Regular dose 
> is 500 mg. I'm just weird. So now off all bosulif. Pray my numbers stay down 
> for several months...dont need another one! God is in charge...Jeannie, 
> without pills this time lol. You all mean so much to me. I'm feeling fine 
> now. God bless and stay safe on new year's eve! Thanks for yr. prayers.
> 18's and love, Sz
> 
> Sent from my Sprint phone
> 
> -- Original message--
> From: Myvety2k via CMLHope
> Date: Wed, Dec 30, 2015 3:34 PM
> To: cmlhope@googlegroups.com;
> Subject:Re: [CMLHope] Re: Merry Christmas and happy Hilidays
> 
> -- 
> -- 
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Re: [CMLHope] Re: stroke

2016-01-03 Thread bkbarney via CMLHope
Susan, you are a strong and amazingly positive woman...I am so sorry this 
happened..but trust you will heal.I think it's so hard to know what to 
do..regarding dosages and changing meds.trust your own knowing about your 
body and your own knowing about what may work best for you..


Much love and healing energy... Beth



-Original Message-
From: 'Susan Zimmerman' via CMLHope 
To: cmlhope 
Sent: Wed, Dec 30, 2015 11:50 pm
Subject: Re: [CMLHope] Re: stroke



Dear all,
Just a note to say I'm in my local hospital. It did turn out to be a small 
stroke which started last Sat. In morning I will learn if 2nd cat svan showed 
the bleeding stopped. Prayers are appreciated. I am agitated w myself for 
agreeing to up the bosulif when my numbers increased just a little. If I had 
followed the doc's suggestion of an even higher dose I would be dead now. After 
10 days on 200 mg of bosulif, here comes another stroke! Regular dose is 500 
mg. I'm just weird. So now off all bosulif. Pray my numbers stay down for 
several months...dont need another one! God is in charge...Jeannie, without 
pills this time lol. You all mean so much to me. I'm feeling fine now. God 
bless and stay safe on new year's eve! Thanks for yr. prayers.
18's and love, Sz


Sent from my Sprint phone




-- Original message--
From: Myvety2k via CMLHope 
Date: Wed, Dec 30, 2015 3:34 PM
To: cmlhope@googlegroups.com;
Subject:Re: [CMLHope] Re: Merry Christmas and happy Hilidays




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Re: [CMLHope] Re: stroke

2016-01-03 Thread 'Icandoallttc' via CMLHope
Yes, glad you are home. My last stay in the hospital was 10 days.  Was so glad 
to get home and get some real food!!!
Yes Marty , where are you??? β€οΈπŸ˜‡πŸ˜‡πŸŽΌ

My Motto: Faith and Pills
Jeanie 🐟🐟18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jan 3, 2016, at 12:42 PM, bkbarney via CMLHope  
> wrote:
> 
> Susan,
>  very happy you are out of the hospital...hope the new year ahead is full of 
> joy, healing and renewed health for you...glad you are out of the hospital 
> too. Please take good care...Love, and 18's Beth..
> 
> p.s. I was thinking the same thing about Marty..where are you Marty and how 
> are you B
> 
> 
> -Original Message-
> From: Myvety2k via CMLHope 
> To: cmlhope 
> Sent: Sun, Jan 3, 2016 5:20 am
> Subject: Re: [CMLHope] Re: stroke
> 
> SZ, theirs nothing like being in your own home, glad your out of the hospital 
> it's safer to be at home.
>  
> greenie
>  
> In a message dated 1/2/2016 7:24:17 P.M. Eastern Standard Time, 
> cmlhope@googlegroups.com writes:
> Dear Angie,
> 
> Hooray for 6 mos free of gleevec!  I'm so hopeful I can stay off bosulif 
> until I turn 65 next September without my numbers going crazy.  I know you 
> are thrilled to get your body back, lol!  Thanks and you are right, what a 
> way to end 2015!  So glad I got out of hospital on the 31st, which made 
> insurance so much easier for the change in years.
> 
> All you blood buddies out there, best wishes to you all and I lift you in my 
> prayers whenever I hear about problems.  Anybody heard from Marty lately?
> It's been ages.
> 
> 18's,
> Susan Z
> -- 
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Re: [CMLHope] Re: Happy New Year to all

2016-01-03 Thread bkbarney via CMLHope
Dear Jeanie and everyone...,
went back on my chemo on the first...cells showing again after 5 weeks 
offso uptaking now...doing o.k. except for the usual headaches which go 
away after a few weeks...also trying steroids to lower the cpk . Working on 
holistic ways to manage pain to have a better quality of life in the new year 
and hopefully be better able to be active and move more...my goal..




my best to all..hope it is a truly great year ahead...glad we can share our 
journeys together..
my best, hug, love, 18'sbEth



-Original Message-
From: Richard H 
To: CMLHope 
Cc: icandoallttc 
Sent: Fri, Jan 1, 2016 11:25 pm
Subject: [CMLHope] Re: Happy New Year to all



Happy New Year!  Yeah for the new meds working.  I hope the pain goes away 
soon.  I am glad you enjoy working on your gemology.  I have worked on parts of 
my family from my Dad and Sister-in-law expanding it to try to satisfy a 
question asked at my grandmothers bedside near the end of her life.  She only 
answered "Little Indian girls and boys play.  With the computer, I have 
expanded my grandparents families back to England, Scotland, and Ireland 
proving most stories absolutely correct.  The Indian story is probably correct, 
I have proven body features are viable.  Recently a 100% American Indian lady 
was visiting with me and asked about a foot feature I thought was from wearing 
tight pointed cowboy boots.  She told me to check the feature out at the Indian 
genealogy site, and what I have is a dominant Indian feature.  To prove this 
point I need to get a DNA test from Ancestry. com, as they have many early 
Americans that simply incorporated into their family.  

18's and may 2016 be a climb to the best we can be!!

Richard H. 

On Monday, December 28, 2015 at 7:05:39 AM UTC-6, Icandoallttc wrote:
Happy New Year!!! May the year bring you healing and love. 
My new chemo is working so far.  The pain in my side won't let up but I am 
dealing with it.  I am going to start a new herb garden soon.   I am working in 
my genealogy when I feel like it. 
Let the sun shine in your heart and keep fighting!!!
How are you Beth?  Are you still off your meds?
Can everyone send a note and tell us how you are when you get the chance?
Thanks. 
β€οΈπŸ˜‡πŸŽΌπŸŽΌπŸŽΌπŸŽΆπŸŽΆ

My Motto: Faith and Pills
Jeanie 🐟🐟18,s 
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

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Re: [CMLHope] Re: stroke

2016-01-03 Thread bkbarney via CMLHope
Susan,
 very happy you are out of the hospital...hope the new year ahead is full of 
joy, healing and renewed health for you...glad you are out of the hospital too. 
Please take good care...Love, and 18's Beth..


p.s. I was thinking the same thing about Marty..where are you Marty and how are 
you B



-Original Message-
From: Myvety2k via CMLHope 
To: cmlhope 
Sent: Sun, Jan 3, 2016 5:20 am
Subject: Re: [CMLHope] Re: stroke



SZ, theirs nothing like being in your own home, glad your out of the hospital 
it's safer to be at home.
 
greenie
 

In a message dated 1/2/2016 7:24:17 P.M. Eastern Standard Time, 
cmlhope@googlegroups.com writes:
  
  
  
Dear Angie, 
  


  
Hooray for 6 mos free of gleevec!  I'm so   hopeful I can stay off bosulif 
until I turn 65 next September without my   numbers going crazy.  I know you 
are thrilled to get your body back, lol!Thanks and you are right, what a 
way to end 2015!  So glad I got   out of hospital on the 31st, which made 
insurance so much easier for the   change in years.
  


  
All you blood buddies out there, best wishes to you   all and I lift you in my 
prayers whenever I hear about problems.  Anybody   heard from Marty lately?
  
It's been ages.
  


  
18's,
  
Susan Z

  
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Re: [CMLHope] Re: stroke

2016-01-03 Thread Myvety2k via CMLHope
SZ, theirs nothing like being in your own home, glad your out  of the 
hospital it's safer to be at home.
 
greenie
 
 
In a message dated 1/2/2016 7:24:17 P.M. Eastern Standard Time,  
cmlhope@googlegroups.com writes:

 
 
Dear Angie, 


Hooray for 6 mos free of gleevec!  I'm so  hopeful I can stay off bosulif 
until I turn 65 next September without my  numbers going crazy.  I know you 
are thrilled to get your body back, lol!  Thanks and you are right, what a 
way to end 2015!  So glad I got  out of hospital on the 31st, which made 
insurance so much easier for the  change in years.


All you blood buddies out there, best wishes to you  all and I lift you in 
my prayers whenever I hear about problems.  Anybody  heard from Marty lately?
It's been ages.


18's,
Susan Z


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