Re: [CMLHope] Right hand numb

[Marty Gartenberg]

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 <
cmlhope@googlegroups.com> 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 
> 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 <
> cmlhope@googlegroups.com> 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 <
> cmlhope@googlegroups.com> 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 CMLHope@googlegroups.com
> 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 

Re: [CMLHope] Right hand numb

['Susan Zimmerman' via CMLHope]

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  
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 
 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 
 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 

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To 

Re: [CMLHope] Right hand numb

[bkbarney via CMLHope]

Thanks Marty! Baruch Hashem!

18/s Beth

-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Tue, Oct 3, 2017 7:44 am
Subject: Re: [CMLHope] Right hand numb



Beth,






18's,


Marty



On Mon, Oct 2, 2017 at 11:34 PM, bkbarney via CMLHope 
 wrote:

Good luck with your blood work Jeannie. Getting the MRI before you see your doc 
so he can go over any results he has with you makes sense. I have no idea about 
the nurse practitioner appt. But I would encourage you to always inquire about 
it If you are not comfortable, talk with them. 


My blood work was good. BCR undetectable. CPK still very high and now 
hypothyroid...so will adjust meds accordingly. But great news about sprycel 
continuing to help me!


Love you all




18s Beth



-Original Message-
From: 'Jeanie' via CMLHope 
To: cmlhope 
Sent: Mon, Oct 2, 2017 2:52 pm
Subject: Re: [CMLHope] Right hand numb



Thanks Beth and yes thinks it's pinched nerve.  I read in bed and prop up on 
pillows. Need to change positions.  
Hope every thing is good. Going Wednesday to get my blood done. 
Something happened to me at Moffitt that has never happened before. Moffitt 
called and wants me to meet with his nurse practitioner in stead of him.  I've 
been going to Moffitt for about 8 years.  
Also he's having me do the mrui the week before because he wanted to discuss my 
side pain.  Just wondering.  Thanks.  

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 11:18 PM, bkbarney via CMLHope  
wrote:



Jeannie, 


Do you wake up with this every day after sleeping? Does it lessen any time 
during the day, or get more intense? My first thought is that what other's have 
said, it could be a pinched nerve that when you lay a certain way, it impinges 
and causes pain. The nerve pain can move to include the hand as a whole. This 
could be coming off of your neck, a cervical or perhaps a shoulder issue. I am 
not a doctor so I have no idea, but those are my thoughts.  

Hope everyone is well. I went to U of C this morning to get my test results. 
They were not back. My doc was rather upset at the lab for taking so  long..so 
I will share when I know more.


Love to all, 18's 


Beth


-Original Message-
From: 'Susan Zimmerman' via CMLHope 
To: cmlhope 
Sent: Wed, Sep 27, 2017 8:57 am
Subject: RE: [CMLHope] Right hand numb



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 
 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 

-- 
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Re: [CMLHope] Right hand numb

[Marty Gartenberg]

Beth,



18's,

Marty

On Mon, Oct 2, 2017 at 11:34 PM, bkbarney via CMLHope <
cmlhope@googlegroups.com> wrote:

> Good luck with your blood work Jeannie. Getting the MRI before you see
> your doc so he can go over any results he has with you makes sense. I have
> no idea about the nurse practitioner appt. But I would encourage you to
> always inquire about it If you are not comfortable, talk with them.
>
> My blood work was good. BCR undetectable. CPK still very high and now
> hypothyroid...so will adjust meds accordingly. But great news about sprycel
> continuing to help me!
>
> Love you all
>
>
> 18s Beth
>
>
> -Original Message-
> From: 'Jeanie' via CMLHope 
> To: cmlhope 
> Sent: Mon, Oct 2, 2017 2:52 pm
> Subject: Re: [CMLHope] Right hand numb
>
> Thanks Beth and yes thinks it's pinched nerve.  I read in bed and prop up
> on pillows. Need to change positions.
> Hope every thing is good. Going Wednesday to get my blood done.
> Something happened to me at Moffitt that has never happened before.
> Moffitt called and wants me to meet with his nurse practitioner in stead of
> him.  I've been going to Moffitt for about 8 years.
> Also he's having me do the mrui the week before because he wanted to
> discuss my side pain.  Just wondering.  Thanks.
>
> 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 11:18 PM, bkbarney via CMLHope <
> cmlhope@googlegroups.com> wrote:
>
> Jeannie,
>
> Do you wake up with this every day after sleeping? Does it lessen any time
> during the day, or get more intense? My first thought is that what other's
> have said, it could be a pinched nerve that when you lay a certain way, it
> impinges and causes pain. The nerve pain can move to include the hand as a
> whole. This could be coming off of your neck, a cervical or perhaps a
> shoulder issue. I am not a doctor so I have no idea, but those are my
> thoughts.
>
> Hope everyone is well. I went to U of C this morning to get my test
> results. They were not back. My doc was rather upset at the lab for taking
> so  long..so I will share when I know more.
>
> Love to all, 18's
>
> Beth
>
> -Original Message-
> From: 'Susan Zimmerman' via CMLHope 
> To: cmlhope 
> Sent: Wed, Sep 27, 2017 8:57 am
> Subject: RE: [CMLHope] Right hand numb
>
> 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 <
> cmlhope@googlegroups.com> 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
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>
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> googlegroups.com
> For more options, visit this group at http://groups.google.com/
> group/CMLHope
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