subject:"\[CMLHope\] Re\: CMLHope\] Re\: Dizzy all day"

Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

2016-03-24 Thread Marty Gartenberg

Hi Richard,

I just got my pacemaker and will go to the hospital this Monday morning to
have my staples removed. What a difference that pacemaker has on me. No
more a-fibs but the ones that are still there are very mild and the doctor
tells me I shouldn't worry and not to be concerned.

18's,

Marty

On Wed, Mar 23, 2016 at 11:48 PM, Richard H  wrote:

> I don't call ins.  I have a pacemaker machine I use and call in the report
> (electronic recording of what it is doing) every 3 months and I go to the
> office once a year for a face to face with the big machine to have it read
> by a technician..
>
> Richard H.
>
> On Wednesday, March 23, 2016 at 9:34:39 AM UTC-5, Icandoallttc wrote:
>>
>> Hi Richard and thanks for the update. I didn't know they still did call
>> ins.
>> I feel my mom wouldn't be here if she hadn't had her pacemaker.
>> She never had to have the battery replaced.
>> She was overweight when she had it put in and the doctor told her to lose
>> weight.  He said it was like putting a volts wagon battery in a Cadillac.
>> She did lose weight after being overweight all her life.  Just changed her
>> way of eating.
>> Good luck all.
>>
>> My Motto: Faith and Pills❤️
>> With Jeanie 18,s Chi
>> 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 Mar 22, 2016, at 11:50 PM, Richard H  wrote:
>>
>> Welcome to the pacemaker club.  I have had one for about 8 years.  Scar
>> tissue built up in my heart from 5 by-passes in1991.  I see my heart Dr.
>> Thursday and I will hear about the battery life left.  I think it is about
>> 2 years left and I have to report in by phone 3 times and 1 visit a year..
>> Wonderful piece of engineering.
>>
>> I found an increase in energy by the I got home (overnight stay)).
>>
>> We'll just keep on keeping on.
>>
>> 18's
>>
>> Richard H.
>>
>> On Monday, March 21, 2016 at 11:48:00 PM UTC-5, wa2yyx wrote:
>>>
>>> Hi Susan,
>>>
>>> Yes I am finally home. Left the hospital at 3:00 PM and it took my wife
>>> about one hour to drive back home. The pacemaker is in and adjusted and
>>> fine tuned. Amazing how these work. No more fainting spells which only
>>> would last for only 2 seconds so I haven't actually fainted. I was always
>>> been able to keep my eyes open and hear as well as even hearing and talking
>>>   Have some pain where they made the incision but some Tylenol PM should
>>> help me sleep, nothing I can't handle.
>>>
>>> Thank you for asking about me.
>>>
>>> 18's,
>>>
>>> Marty
>>>
>>> On Mon, Mar 21, 2016 at 7:25 PM, 'Susan Zimmerman' via CMLHope <
>>> cml...@googlegroups.com> wrote:
>>>
 Love you to pieces, Marty! Hope you comfortably home by now. An update
 for me, please!

 18's,

 Susan F. Zimmerman
 "All who humble themselves before the Lord shall be given every
 blessing, and shall have wonderful peace." Ps.37:11
 --
 On Monday, March 21, 2016 Myvety2k via CMLHope 
 wrote:
 Marty, got my fingers crossed.

 greenie

 In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time,
 wa2...@gmail.com writes:

 Hi Beth,

 I am actually still in the hospital but maybe today I will be getting
 out just have to wait for the doctors when they make their rounds. I will
 keep everyone updated.

 18's,

 Marty

 bkbarney via CMLHope  wrote:
 Dear Marty,
 So glad you are out of the hospital! And Peg, you are so right about
 what you said to Jeanie...Hope everyone is doing as well as possible.
 Thinking of all of you...love, and 18's Beth

 -Original Message-
 From: 'Icandoallttc' via CMLHope 
 To: peg 
 Cc: CMLHope 
 Sent: Fri, Mar 18, 2016 11:19 am
 Subject: [CMLHope] Re: Dizzy all day

 Thanks Peg,
 You are so right.  I was reading the side effects of ponatinib and i
 was thinking I have to take this??!
 Well yes I do and blood clots and heart problems are right up there
 high on the list.
 My potassium tends to be high also and you can get heart problems from
 that.
 Just have to fight on and thanks again.

 My Motto: Faith and Pills❤️
 With Jeanie 18,s Chi
 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 Mar 18, 2016, at 12:00 PM, peg  wrote:

 Hi Jeanie,

 I was traveling on business this week and just checked in and am
 wondering if you are feeling better?

 I had to caution another cancer patient recently not to write

Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

2016-03-23 Thread Richard H

I don't call ins.  I have a pacemaker machine I use and call in the report 
(electronic recording of what it is doing) every 3 months and I go to the 
office once a year for a face to face with the big machine to have it read 
by a technician..

Richard H. 

On Wednesday, March 23, 2016 at 9:34:39 AM UTC-5, Icandoallttc wrote:
>
> Hi Richard and thanks for the update. I didn't know they still did call 
> ins. 
> I feel my mom wouldn't be here if she hadn't had her pacemaker. 
> She never had to have the battery replaced.  
> She was overweight when she had it put in and the doctor told her to lose 
> weight.  He said it was like putting a volts wagon battery in a Cadillac. 
>  She did lose weight after being overweight all her life.  Just changed her 
> way of eating. 
> Good luck all. 
>
> My Motto: Faith and Pills❤️
> With Jeanie 18,s Chi
> 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 Mar 22, 2016, at 11:50 PM, Richard H  
> wrote:
>
> Welcome to the pacemaker club.  I have had one for about 8 years.  Scar 
> tissue built up in my heart from 5 by-passes in1991.  I see my heart Dr. 
> Thursday and I will hear about the battery life left.  I think it is about 
> 2 years left and I have to report in by phone 3 times and 1 visit a year..  
> Wonderful piece of engineering.
>
> I found an increase in energy by the I got home (overnight stay)).  
>
> We'll just keep on keeping on.
>
> 18's
>
> Richard H.
>
> On Monday, March 21, 2016 at 11:48:00 PM UTC-5, wa2yyx wrote:
>>
>> Hi Susan, 
>>
>> Yes I am finally home. Left the hospital at 3:00 PM and it took my wife 
>> about one hour to drive back home. The pacemaker is in and adjusted and 
>> fine tuned. Amazing how these work. No more fainting spells which only 
>> would last for only 2 seconds so I haven't actually fainted. I was always 
>> been able to keep my eyes open and hear as well as even hearing and talking 
>>   Have some pain where they made the incision but some Tylenol PM should 
>> help me sleep, nothing I can't handle.
>>
>> Thank you for asking about me.   
>>
>> 18's,
>>
>> Marty
>>
>> On Mon, Mar 21, 2016 at 7:25 PM, 'Susan Zimmerman' via CMLHope <
>> cml...@googlegroups.com> wrote:
>>
>>> Love you to pieces, Marty! Hope you comfortably home by now. An update 
>>> for me, please!
>>>
>>> 18's,
>>>
>>> Susan F. Zimmerman
>>> "All who humble themselves before the Lord shall be given every 
>>> blessing, and shall have wonderful peace." Ps.37:11
>>> --
>>> On Monday, March 21, 2016 Myvety2k via CMLHope  
>>> wrote:
>>> Marty, got my fingers crossed.
>>>  
>>> greenie
>>>  
>>> In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time, 
>>> wa2...@gmail.com writes:
>>>
>>> Hi Beth, 
>>>
>>> I am actually still in the hospital but maybe today I will be getting 
>>> out just have to wait for the doctors when they make their rounds. I will 
>>> keep everyone updated.
>>>
>>> 18's,
>>>
>>> Marty
>>>
>>> bkbarney via CMLHope  wrote:
>>> Dear Marty, 
>>> So glad you are out of the hospital! And Peg, you are so right about 
>>> what you said to Jeanie...Hope everyone is doing as well as possible. 
>>> Thinking of all of you...love, and 18's Beth
>>>
>>> -Original Message-
>>> From: 'Icandoallttc' via CMLHope 
>>> To: peg 
>>> Cc: CMLHope 
>>> Sent: Fri, Mar 18, 2016 11:19 am
>>> Subject: [CMLHope] Re: Dizzy all day
>>>
>>> Thanks Peg,
>>> You are so right.  I was reading the side effects of ponatinib and i was 
>>> thinking I have to take this??!
>>> Well yes I do and blood clots and heart problems are right up there high 
>>> on the list. 
>>> My potassium tends to be high also and you can get heart problems from 
>>> that. 
>>> Just have to fight on and thanks again. 
>>>
>>>
>>>
>>> My Motto: Faith and Pills❤️ 
>>> With Jeanie 18,s Chi 
>>> 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 Mar 18, 2016, at 12:00 PM, peg  wrote:
>>>
>>>
>>> Hi Jeanie,  
>>>
>>> I was traveling on business this week and just checked in and am 
>>> wondering if you are feeling better?  
>>>
>>> I had to caution another cancer patient recently not to write off sudden 
>>> changes as normal...caused by treatment, age, etc.  The new generation of 
>>> meds to treat CML and other cancers can have side effects that can be 
>>> deadly if not caught in time.  Sprycel was a really good example of this. 
>>> Prior to the FDA warning that it can cause deadly pulmonary hypertension no 
>>> one was paying attention to folks that were already on it.  When one of our 
>>> CML warriors started feeling weak and dizzy,

Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

2016-03-23 Thread 'Icandoallttc' via CMLHope

Hi Richard and thanks for the update. I didn't know they still did call ins. 
I feel my mom wouldn't be here if she hadn't had her pacemaker. 
She never had to have the battery replaced.  
She was overweight when she had it put in and the doctor told her to lose 
weight.  He said it was like putting a volts wagon battery in a Cadillac.  She 
did lose weight after being overweight all her life.  Just changed her way of 
eating. 
Good luck all. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
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 Mar 22, 2016, at 11:50 PM, Richard H  wrote:
> 
> Welcome to the pacemaker club.  I have had one for about 8 years.  Scar 
> tissue built up in my heart from 5 by-passes in1991.  I see my heart Dr. 
> Thursday and I will hear about the battery life left.  I think it is about 2 
> years left and I have to report in by phone 3 times and 1 visit a year..  
> Wonderful piece of engineering.
> 
> I found an increase in energy by the I got home (overnight stay)).  
> 
> We'll just keep on keeping on.
> 
> 18's
> 
> Richard H.
> 
>> On Monday, March 21, 2016 at 11:48:00 PM UTC-5, wa2yyx wrote:
>> Hi Susan,
>> 
>> Yes I am finally home. Left the hospital at 3:00 PM and it took my wife 
>> about one hour to drive back home. The pacemaker is in and adjusted and fine 
>> tuned. Amazing how these work. No more fainting spells which only would last 
>> for only 2 seconds so I haven't actually fainted. I was always been able to 
>> keep my eyes open and hear as well as even hearing and talking   Have some 
>> pain where they made the incision but some Tylenol PM should help me sleep, 
>> nothing I can't handle.
>> 
>> Thank you for asking about me.   
>> 
>> 18's,
>> 
>> Marty
>> 
>>> On Mon, Mar 21, 2016 at 7:25 PM, 'Susan Zimmerman' via CMLHope 
>>>  wrote:
>>> Love you to pieces, Marty! Hope you comfortably home by now. An update for 
>>> me, please!
>>> 
>>> 18's,
>>> 
>>> Susan F. Zimmerman
>>> "All who humble themselves before the Lord shall be given every blessing, 
>>> and shall have wonderful peace." Ps.37:11
>>> 
>>> On Monday, March 21, 2016 Myvety2k via CMLHope  
>>> wrote:
>>> Marty, got my fingers crossed.
>>>  
>>> greenie
>>>  
>>> In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time, 
>>> wa2...@gmail.com writes:
>>> Hi Beth, 
>>> 
>>> I am actually still in the hospital but maybe today I will be getting out 
>>> just have to wait for the doctors when they make their rounds. I will keep 
>>> everyone updated.
>>> 
>>> 18's,
>>> 
>>> Marty
>>> 
>>> bkbarney via CMLHope  wrote:
>>> Dear Marty,
>>> So glad you are out of the hospital! And Peg, you are so right about what 
>>> you said to Jeanie...Hope everyone is doing as well as possible. Thinking 
>>> of all of you...love, and 18's Beth
>>> 
>>> -Original Message-
>>> From: 'Icandoallttc' via CMLHope 
>>> To: peg 
>>> Cc: CMLHope 
>>> Sent: Fri, Mar 18, 2016 11:19 am
>>> Subject: [CMLHope] Re: Dizzy all day
>>> 
>>> Thanks Peg,
>>> You are so right.  I was reading the side effects of ponatinib and i was 
>>> thinking I have to take this??!
>>> Well yes I do and blood clots and heart problems are right up there high on 
>>> the list. 
>>> My potassium tends to be high also and you can get heart problems from 
>>> that. 
>>> Just have to fight on and thanks again. 
>>> 
>>> 
>>> 
>>> My Motto: Faith and Pills❤️
>>> With Jeanie 18,s Chi
>>> 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 Mar 18, 2016, at 12:00 PM, peg  wrote:
>>> 
>>> 
>>> Hi Jeanie, 
>>> 
>>> I was traveling on business this week and just checked in and am wondering 
>>> if you are feeling better?  
>>> 
>>> I had to caution another cancer patient recently not to write off sudden 
>>> changes as normal...caused by treatment, age, etc.  The new generation of 
>>> meds to treat CML and other cancers can have side effects that can be 
>>> deadly if not caught in time.  Sprycel was a really good example of this. 
>>> Prior to the FDA warning that it can cause deadly pulmonary hypertension no 
>>> one was paying attention to folks that were already on it.  When one of our 
>>> CML warriors started feeling weak and dizzy, even her doctor dismissed it, 
>>> for months, until she collapsed and woke up in the cardiac care unit.  She 
>>> almost died, and had a long road to recovery. Her spreading the word saved 
>>> other lives!   Everyone should know their meds, know what the symptoms are 
>>> of the dangerous side effects and alert their doctor if those symptoms 
>>> present. It doesn't hurt to tell

Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

2016-03-22 Thread Richard H

Welcome to the pacemaker club.  I have had one for about 8 years.  Scar 
tissue built up in my heart from 5 by-passes in1991.  I see my heart Dr. 
Thursday and I will hear about the battery life left.  I think it is about 
2 years left and I have to report in by phone 3 times and 1 visit a year..  
Wonderful piece of engineering.

I found an increase in energy by the I got home (overnight stay)).  

We'll just keep on keeping on.

18's

Richard H.

On Monday, March 21, 2016 at 11:48:00 PM UTC-5, wa2yyx wrote:
>
> Hi Susan, 
>
> Yes I am finally home. Left the hospital at 3:00 PM and it took my wife 
> about one hour to drive back home. The pacemaker is in and adjusted and 
> fine tuned. Amazing how these work. No more fainting spells which only 
> would last for only 2 seconds so I haven't actually fainted. I was always 
> been able to keep my eyes open and hear as well as even hearing and talking 
>   Have some pain where they made the incision but some Tylenol PM should 
> help me sleep, nothing I can't handle.
>
> Thank you for asking about me.   
>
> 18's,
>
> Marty
>
> On Mon, Mar 21, 2016 at 7:25 PM, 'Susan Zimmerman' via CMLHope <
> cml...@googlegroups.com > wrote:
>
>> Love you to pieces, Marty! Hope you comfortably home by now. An update 
>> for me, please!
>>
>> 18's,
>>
>> Susan F. Zimmerman
>> "All who humble themselves before the Lord shall be given every blessing, 
>> and shall have wonderful peace." Ps.37:11
>> --
>> On Monday, March 21, 2016 Myvety2k via CMLHope > > wrote:
>> Marty, got my fingers crossed.
>>  
>> greenie
>>  
>> In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time, 
>> wa2...@gmail.com  writes:
>>
>> Hi Beth, 
>>
>> I am actually still in the hospital but maybe today I will be getting out 
>> just have to wait for the doctors when they make their rounds. I will keep 
>> everyone updated.
>>
>> 18's,
>>
>> Marty
>>
>> bkbarney via CMLHope  wrote:
>> Dear Marty, 
>> So glad you are out of the hospital! And Peg, you are so right about what 
>> you said to Jeanie...Hope everyone is doing as well as possible. Thinking 
>> of all of you...love, and 18's Beth
>>
>> -Original Message-
>> From: 'Icandoallttc' via CMLHope 
>> To: peg 
>> Cc: CMLHope 
>> Sent: Fri, Mar 18, 2016 11:19 am
>> Subject: [CMLHope] Re: Dizzy all day
>>
>> Thanks Peg,
>> You are so right.  I was reading the side effects of ponatinib and i was 
>> thinking I have to take this??!
>> Well yes I do and blood clots and heart problems are right up there high 
>> on the list. 
>> My potassium tends to be high also and you can get heart problems from 
>> that. 
>> Just have to fight on and thanks again. 
>>
>>
>>
>> My Motto: Faith and Pills❤️ 
>> With Jeanie 18,s Chi 
>> 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 Mar 18, 2016, at 12:00 PM, peg  wrote:
>>
>>
>> Hi Jeanie,  
>>
>> I was traveling on business this week and just checked in and am 
>> wondering if you are feeling better?  
>>
>> I had to caution another cancer patient recently not to write off sudden 
>> changes as normal...caused by treatment, age, etc.  The new generation of 
>> meds to treat CML and other cancers can have side effects that can be 
>> deadly if not caught in time.  Sprycel was a really good example of this. 
>> Prior to the FDA warning that it can cause deadly pulmonary hypertension no 
>> one was paying attention to folks that were already on it.  When one of our 
>> CML warriors started feeling weak and dizzy, even her doctor dismissed it, 
>> for months, until she collapsed and woke up in the cardiac care unit.  She 
>> almost died, and had a long road to recovery. Her spreading the word saved 
>> other lives!   Everyone should know their meds, know what the symptoms are 
>> of the dangerous side effects and alert their doctor if those symptoms 
>> present. It doesn't hurt to tell the doctor you are concerned it is a side 
>> effect of your meds, you would be surprised how many doctors are not 
>> familiar with the side effects of the meds they are prescribing!  
>>
>> I think those of us living with cancer or any other chronic disease are 
>> kind of stoic and don't whine a lot...but sometimes we should. 
>>
>> *Note to Marty...since I am sure you are reading this...you are in my 
>> prayers!!*
>>
>> Fight on,
>> Peg
>>
>> -- 
>> -- 
>> [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 cml...@googlegroups.com 
>> 
>> To unsubscribe from this group, send email to 
>> cmlhope-u...@googlegroups.com 
>> For more

Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

2016-03-22 Thread 'Susan Zimmerman' via CMLHope

So glad to hear the good news! That hour must have been a long one after 
discharge. You'll be playing tennis in no time!!

Love, hugs and 18's



Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Tuesday, March 22, 2016 Myvety2k via CMLHope  
wrote:

Thanks for the good news Marty.

 

greenie

 

In a message dated 3/22/2016 12:47:59 A.M. Eastern Daylight Time, 
wa2...@gmail.com writes:

Hi Susan, 


Yes I am finally home. Left the hospital at 3:00 PM and it took my wife about 
one hour to drive back home. The pacemaker is in and adjusted and fine tuned. 
Amazing how these work. No more fainting spells which only would last for only 
2 seconds so I haven't actually fainted. I was always been able to keep my eyes 
open and hear as well as even hearing and talking   Have some pain where they 
made the incision but some Tylenol PM should help me sleep, nothing I can't 
handle.


Thank you for asking about me.   


18's,


Marty


On Mon, Mar 21, 2016 at 7:25 PM, 'Susan Zimmerman' via CMLHope 
 wrote:

Love you to pieces, Marty! Hope you comfortably home by now. An update for me, 
please!

18's,

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Monday, March 21, 2016 Myvety2k via CMLHope  wrote:

Marty, got my fingers crossed.

 

greenie

 

In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time, 
wa2...@gmail.com writes:

Hi Beth, 

I am actually still in the hospital but maybe today I will be getting out just 
have to wait for the doctors when they make their rounds. I will keep everyone 
updated.

18's,

Marty

bkbarney via CMLHope  wrote:
Dear Marty, 

So glad you are out of the hospital! And Peg, you are so right about what you 
said to Jeanie...Hope everyone is doing as well as possible. Thinking of all of 
you...love, and 18's Beth

-Original Message-

From: 'Icandoallttc' via CMLHope 
To: peg 
Cc: CMLHope 
Sent: Fri, Mar 18, 2016 11:19 am
Subject: [CMLHope] Re: Dizzy all day

Thanks Peg,

You are so right.  I was reading the side effects of ponatinib and i was 
thinking I have to take this??!

Well yes I do and blood clots and heart problems are right up there high on the 
list. 

My potassium tends to be high also and you can get heart problems from that. 

Just have to fight on and thanks again. 




My Motto: Faith and Pills❤️ 

With Jeanie 18,s Chi 

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 Mar 18, 2016, at 12:00 PM, peg  wrote:


Hi Jeanie,  


I was traveling on business this week and just checked in and am wondering if 
you are feeling better?  


I had to caution another cancer patient recently not to write off sudden 
changes as normal...caused by treatment, age, etc.  The new generation of meds 
to treat CML and other cancers can have side effects that can be deadly if not 
caught in time.  Sprycel was a really good example of this. Prior to the FDA 
warning that it can cause deadly pulmonary hypertension no one was paying 
attention to folks that were already on it.  When one of our CML warriors 
started feeling weak and dizzy, even her doctor dismissed it, for months, until 
she collapsed and woke up in the cardiac care unit.  She almost died, and had a 
long road to recovery. Her spreading the word saved other lives!   Everyone 
should know their meds, know what the symptoms are of the dangerous side 
effects and alert their doctor if those symptoms present. It doesn't hurt to 
tell the doctor you are concerned it is a side effect of your meds, you would 
be surprised how many doctors are not familiar with the side effects of the 
meds they are prescribing!  


I think those of us living with cancer or any other chronic disease are kind of 
stoic and don't whine a lot...but sometimes we should. 


Note to Marty...since I am sure you are reading this...you are in my prayers!!


Fight on,

Peg

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Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

2016-03-22 Thread 'Icandoallttc' via CMLHope

Hi Marty and so happy to hear you are home.  I was wondering why they didn't 
put in a pacemaker. My mom had to have one in her 70s and her heart ran smooth 
until she passed away at 87. I remember she had a phone that she could test it 
every week.  It beat at a steady 70 beats per minute. 
My sister 84 recently had to have one and my brother had one put in in his 70s. 
So keep ticking and praying for all of us. 
❤️❤️❤️
My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
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 Mar 22, 2016, at 12:47 AM, Marty Gartenberg  wrote:
> 
> Hi Susan,
> 
> Yes I am finally home. Left the hospital at 3:00 PM and it took my wife about 
> one hour to drive back home. The pacemaker is in and adjusted and fine tuned. 
> Amazing how these work. No more fainting spells which only would last for 
> only 2 seconds so I haven't actually fainted. I was always been able to keep 
> my eyes open and hear as well as even hearing and talking   Have some pain 
> where they made the incision but some Tylenol PM should help me sleep, 
> nothing I can't handle.
> 
> Thank you for asking about me.   
> 
> 18's,
> 
> Marty
> 
>> On Mon, Mar 21, 2016 at 7:25 PM, 'Susan Zimmerman' via CMLHope 
>>  wrote:
>> Love you to pieces, Marty! Hope you comfortably home by now. An update for 
>> me, please!
>> 
>> 18's,
>> 
>> Susan F. Zimmerman
>> "All who humble themselves before the Lord shall be given every blessing, 
>> and shall have wonderful peace." Ps.37:11
>> 
>> On Monday, March 21, 2016 Myvety2k via CMLHope  
>> wrote:
>> Marty, got my fingers crossed.
>>  
>> greenie
>>  
>> In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time, 
>> wa2...@gmail.com writes:
>> Hi Beth, 
>> 
>> I am actually still in the hospital but maybe today I will be getting out 
>> just have to wait for the doctors when they make their rounds. I will keep 
>> everyone updated.
>> 
>> 18's,
>> 
>> Marty
>> 
>> bkbarney via CMLHope  wrote:
>> Dear Marty,
>> So glad you are out of the hospital! And Peg, you are so right about what 
>> you said to Jeanie...Hope everyone is doing as well as possible. Thinking of 
>> all of you...love, and 18's Beth
>> 
>> -Original Message-
>> From: 'Icandoallttc' via CMLHope 
>> To: peg 
>> Cc: CMLHope 
>> Sent: Fri, Mar 18, 2016 11:19 am
>> Subject: [CMLHope] Re: Dizzy all day
>> 
>> Thanks Peg,
>> You are so right.  I was reading the side effects of ponatinib and i was 
>> thinking I have to take this??!
>> Well yes I do and blood clots and heart problems are right up there high on 
>> the list. 
>> My potassium tends to be high also and you can get heart problems from that. 
>> Just have to fight on and thanks again. 
>> 
>> 
>> 
>> My Motto: Faith and Pills❤️
>> With Jeanie 18,s Chi
>> 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 Mar 18, 2016, at 12:00 PM, peg  wrote:
>> 
>> 
>> Hi Jeanie, 
>> 
>> I was traveling on business this week and just checked in and am wondering 
>> if you are feeling better?  
>> 
>> I had to caution another cancer patient recently not to write off sudden 
>> changes as normal...caused by treatment, age, etc.  The new generation of 
>> meds to treat CML and other cancers can have side effects that can be deadly 
>> if not caught in time.  Sprycel was a really good example of this. Prior to 
>> the FDA warning that it can cause deadly pulmonary hypertension no one was 
>> paying attention to folks that were already on it.  When one of our CML 
>> warriors started feeling weak and dizzy, even her doctor dismissed it, for 
>> months, until she collapsed and woke up in the cardiac care unit.  She 
>> almost died, and had a long road to recovery. Her spreading the word saved 
>> other lives!   Everyone should know their meds, know what the symptoms are 
>> of the dangerous side effects and alert their doctor if those symptoms 
>> present. It doesn't hurt to tell the doctor you are concerned it is a side 
>> effect of your meds, you would be surprised how many doctors are not 
>> familiar with the side effects of the meds they are prescribing!  
>> 
>> I think those of us living with cancer or any other chronic disease are kind 
>> of stoic and don't whine a lot...but sometimes we should.
>> 
>> Note to Marty...since I am sure you are reading this...you are in my 
>> prayers!!
>> 
>> Fight on,
>> Peg
>> 
>> -- 
>> -- 
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>>  
>> You received this message because you are subscribed to the Google Groups 
>>

Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

2016-03-22 Thread Marty Gartenberg

As you are in my prayers as well.

So far my pacemaker is working well, but still a lot of pain which should
subside once the staples are removed

18's,

Marty

On Tue, Mar 22, 2016 at 12:13 PM, peg  wrote:

>
> Hey Marty,  still in my prayers!  peg
>
>>
>> --
> --
> [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
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[CMLHope] Re: CMLHope] Re: Dizzy all day

2016-03-22 Thread peg


Hey Marty,  still in my prayers!  peg

>
>

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Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

2016-03-22 Thread Myvety2k via CMLHope

Thanks for the good news Marty.
 
greenie
 
 
In a message dated 3/22/2016 12:47:59 A.M. Eastern Daylight Time,  
wa2...@gmail.com writes:

 
Hi Susan, 


Yes I am finally home. Left the hospital at 3:00 PM and it took my wife  
about one hour to drive back home. The pacemaker is in and adjusted and fine  
tuned. Amazing how these work. No more fainting spells which only  would 
last for only 2 seconds so I haven't actually fainted. I was always  been able 
to keep my eyes open and hear as well as even hearing and talking  Have some 
pain where they made the incision but some Tylenol PM  should help me 
sleep, nothing I can't handle.


Thank you for asking about me.   


18's,


Marty


On Mon, Mar 21, 2016 at 7:25 PM, 'Susan Zimmerman' via  CMLHope 
<_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote:

Love you to pieces, Marty! Hope you comfortably home by now. An  update for 
me, please! 
18's, 
Susan F. Zimmerman
"All who humble themselves before the Lord  shall be given every blessing, 
and shall have wonderful peace." Ps.37:11 

 

 
On  Monday, March 21, 2016 Myvety2k via CMLHope <_cmlhope@googlegroups.com_ 
(mailto:cmlhope@googlegroups.com) > wrote:

 
Marty, got my fingers crossed.
 
greenie
 
 
In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time, 
_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com)  writes:

Hi  Beth, 

I am actually still in the hospital but maybe today I will  be getting out 
just have to wait for the doctors when they make their  rounds. I will keep 
everyone  updated.

18's,

Marty

bkbarney via CMLHope <_cmlhope@googlegroups.com_ 
(mailto:cmlhope@googlegroups.com) > wrote:
Dear Marty,  
So glad you are out of the hospital! And Peg, you are so right about  what 
you said to Jeanie...Hope everyone is doing as well as possible.  Thinking 
of all of you...love, and 18's Beth

-Original  Message-

From: 'Icandoallttc' via CMLHope <_cmlhope@googlegroups.com_ 
(mailto:cmlhope@googlegroups.com) >
To: peg <_peg.hss@live.com_ (mailto:peg@live.com) >
Cc: CMLHope <_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) >
Sent: Fri, Mar 18, 2016  11:19 am
Subject: [CMLHope] Re: Dizzy all day


 
Thanks Peg,
You are so right.  I was reading the side effects of ponatinib  and i was 
thinking I have to take this??!
Well yes I do and blood clots and heart problems are right up there  high 
on the list. 
My potassium tends to be high also and you can get heart problems  from 
that. 
Just have to fight on and thanks again. 




My Motto: Faith and Pills❤️  
With Jeanie 18,s Chi  
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 Mar 18, 2016, at 12:00 PM, peg <_peg.hss@live.com_ 
(mailto:peg@live.com) > wrote:





Hi Jeanie,   


I was traveling on business this week and just checked in and am  wondering 
if you are feeling better?  


I had to caution another cancer patient recently not to write off  sudden 
changes as normal...caused by treatment, age, etc.  The new  generation of 
meds to treat CML and other cancers can have side effects  that can be deadly 
if not caught in time.  Sprycel was a really  good example of this. Prior to 
the FDA warning that it can cause deadly  pulmonary hypertension no one was 
paying attention to folks that were  already on it.  When one of our CML 
warriors started feeling weak  and dizzy, even her doctor dismissed it, for 
months, until she collapsed  and woke up in the cardiac care unit.  She almost 
died, and had a  long road to recovery. Her spreading the word saved other 
lives!Everyone should know their meds, know what the symptoms are of the 
 dangerous side effects and alert their doctor if those symptoms present.  
It doesn't hurt to tell the doctor you are concerned it is a side effect  of 
your meds, you would be surprised how many doctors are not familiar  with 
the side effects of the meds they are prescribing!  


I think those of us living with cancer or any other chronic disease  are 
kind of stoic and don't whine a lot...but sometimes we should.  


Note to Marty...since I am sure you are reading this...you are  in my 
prayers!!


Fight on,
Peg







-- 
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Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

2016-03-21 Thread Marty Gartenberg

Hi Susan,

Yes I am finally home. Left the hospital at 3:00 PM and it took my wife
about one hour to drive back home. The pacemaker is in and adjusted and
fine tuned. Amazing how these work. No more fainting spells which only
would last for only 2 seconds so I haven't actually fainted. I was always
been able to keep my eyes open and hear as well as even hearing and talking
  Have some pain where they made the incision but some Tylenol PM should
help me sleep, nothing I can't handle.

Thank you for asking about me.

18's,

Marty

On Mon, Mar 21, 2016 at 7:25 PM, 'Susan Zimmerman' via CMLHope <
cmlhope@googlegroups.com> wrote:

> Love you to pieces, Marty! Hope you comfortably home by now. An update for
> me, please!
>
> 18's,
>
> Susan F. Zimmerman
> "All who humble themselves before the Lord shall be given every blessing,
> and shall have wonderful peace." Ps.37:11
> --
> On Monday, March 21, 2016 Myvety2k via CMLHope 
> wrote:
> Marty, got my fingers crossed.
>
> greenie
>
> In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time,
> wa2...@gmail.com writes:
>
> Hi Beth,
>
> I am actually still in the hospital but maybe today I will be getting out
> just have to wait for the doctors when they make their rounds. I will keep
> everyone updated.
>
> 18's,
>
> Marty
>
> bkbarney via CMLHope  wrote:
> Dear Marty,
> So glad you are out of the hospital! And Peg, you are so right about what
> you said to Jeanie...Hope everyone is doing as well as possible. Thinking
> of all of you...love, and 18's Beth
>
> -Original Message-
> From: 'Icandoallttc' via CMLHope 
> To: peg 
> Cc: CMLHope 
> Sent: Fri, Mar 18, 2016 11:19 am
> Subject: [CMLHope] Re: Dizzy all day
>
> Thanks Peg,
> You are so right.  I was reading the side effects of ponatinib and i was
> thinking I have to take this??!
> Well yes I do and blood clots and heart problems are right up there high
> on the list.
> My potassium tends to be high also and you can get heart problems from
> that.
> Just have to fight on and thanks again.
>
>
>
> My Motto: Faith and Pills❤️
> With Jeanie 18,s Chi
> 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 Mar 18, 2016, at 12:00 PM, peg  wrote:
>
>
> Hi Jeanie,
>
> I was traveling on business this week and just checked in and am wondering
> if you are feeling better?
>
> I had to caution another cancer patient recently not to write off sudden
> changes as normal...caused by treatment, age, etc.  The new generation of
> meds to treat CML and other cancers can have side effects that can be
> deadly if not caught in time.  Sprycel was a really good example of this.
> Prior to the FDA warning that it can cause deadly pulmonary hypertension no
> one was paying attention to folks that were already on it.  When one of our
> CML warriors started feeling weak and dizzy, even her doctor dismissed it,
> for months, until she collapsed and woke up in the cardiac care unit.  She
> almost died, and had a long road to recovery. Her spreading the word saved
> other lives!   Everyone should know their meds, know what the symptoms are
> of the dangerous side effects and alert their doctor if those symptoms
> present. It doesn't hurt to tell the doctor you are concerned it is a side
> effect of your meds, you would be surprised how many doctors are not
> familiar with the side effects of the meds they are prescribing!
>
> I think those of us living with cancer or any other chronic disease are
> kind of stoic and don't whine a lot...but sometimes we should.
>
> *Note to Marty...since I am sure you are reading this...you are in my
> prayers!!*
>
> Fight on,
> Peg
>
> --
> --
> [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-unsubscr...@googlegroups.com
> For more options, visit this group at
> http://groups.google.com/group/CMLHope
> ---
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> "CMLHope" group.
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> email to cmlhope+unsubscr...@googlegroups.com.
> 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.
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> To unsubscribe from this group, send email to
>

Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

2016-03-21 Thread 'Susan Zimmerman' via CMLHope

Love you to pieces, Marty! Hope you comfortably home by now. An update for me, 
please!

18's,

Susan F. Zimmerman
"All who humble themselves before the Lord shall be given every blessing, and 
shall have wonderful peace." Ps.37:11

On Monday, March 21, 2016 Myvety2k via CMLHope  wrote:

Marty, got my fingers crossed.

 

greenie

 

In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time, 
wa2...@gmail.com writes:

Hi Beth, 

I am actually still in the hospital but maybe today I will be getting out just 
have to wait for the doctors when they make their rounds. I will keep everyone 
updated.

18's,

Marty

bkbarney via CMLHope  wrote:
Dear Marty, 

So glad you are out of the hospital! And Peg, you are so right about what you 
said to Jeanie...Hope everyone is doing as well as possible. Thinking of all of 
you...love, and 18's Beth

-Original Message-

From: 'Icandoallttc' via CMLHope 
To: peg 
Cc: CMLHope 
Sent: Fri, Mar 18, 2016 11:19 am
Subject: [CMLHope] Re: Dizzy all day

Thanks Peg,

You are so right.  I was reading the side effects of ponatinib and i was 
thinking I have to take this??!

Well yes I do and blood clots and heart problems are right up there high on the 
list. 

My potassium tends to be high also and you can get heart problems from that. 

Just have to fight on and thanks again. 




My Motto: Faith and Pills❤️ 

With Jeanie 18,s Chi 

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 Mar 18, 2016, at 12:00 PM, peg  wrote:


Hi Jeanie,  


I was traveling on business this week and just checked in and am wondering if 
you are feeling better?  


I had to caution another cancer patient recently not to write off sudden 
changes as normal...caused by treatment, age, etc.  The new generation of meds 
to treat CML and other cancers can have side effects that can be deadly if not 
caught in time.  Sprycel was a really good example of this. Prior to the FDA 
warning that it can cause deadly pulmonary hypertension no one was paying 
attention to folks that were already on it.  When one of our CML warriors 
started feeling weak and dizzy, even her doctor dismissed it, for months, until 
she collapsed and woke up in the cardiac care unit.  She almost died, and had a 
long road to recovery. Her spreading the word saved other lives!   Everyone 
should know their meds, know what the symptoms are of the dangerous side 
effects and alert their doctor if those symptoms present. It doesn't hurt to 
tell the doctor you are concerned it is a side effect of your meds, you would 
be surprised how many doctors are not familiar with the side effects of the 
meds they are prescribing!  


I think those of us living with cancer or any other chronic disease are kind of 
stoic and don't whine a lot...but sometimes we should. 


Note to Marty...since I am sure you are reading this...you are in my prayers!!


Fight on,

Peg

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Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

2016-03-21 Thread 'Icandoallttc' via CMLHope

Prayers Marty!!' ❤️

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
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 Mar 21, 2016, at 10:05 AM, Marty Gartenberg  wrote:
> 
> Thanks
> 
> 18's
> 
> Marty
> 
>> On Monday, March 21, 2016, Myvety2k via CMLHope  
>> wrote:
>> Marty, got my fingers crossed.
>>  
>> greenie
>>  
>> In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time, 
>> wa2...@gmail.com writes:
>> Hi Beth, 
>> 
>> I am actually still in the hospital but maybe today I will be getting out 
>> just have to wait for the doctors when they make their rounds. I will keep 
>> everyone updated.
>> 
>> 18's,
>> 
>> Marty
>> 
>> bkbarney via CMLHope  wrote:
>> Dear Marty,
>> So glad you are out of the hospital! And Peg, you are so right about what 
>> you said to Jeanie...Hope everyone is doing as well as possible. Thinking of 
>> all of you...love, and 18's Beth
>> 
>> -Original Message-
>> From: 'Icandoallttc' via CMLHope 
>> To: peg 
>> Cc: CMLHope 
>> Sent: Fri, Mar 18, 2016 11:19 am
>> Subject: [CMLHope] Re: Dizzy all day
>> 
>> Thanks Peg,
>> You are so right.  I was reading the side effects of ponatinib and i was 
>> thinking I have to take this??!
>> Well yes I do and blood clots and heart problems are right up there high on 
>> the list. 
>> My potassium tends to be high also and you can get heart problems from that. 
>> Just have to fight on and thanks again. 
>> 
>> 
>> 
>> My Motto: Faith and Pills❤️
>> With Jeanie 18,s Chi
>> 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 Mar 18, 2016, at 12:00 PM, peg  wrote:
>> 
>> 
>> Hi Jeanie, 
>> 
>> I was traveling on business this week and just checked in and am wondering 
>> if you are feeling better?  
>> 
>> I had to caution another cancer patient recently not to write off sudden 
>> changes as normal...caused by treatment, age, etc.  The new generation of 
>> meds to treat CML and other cancers can have side effects that can be deadly 
>> if not caught in time.  Sprycel was a really good example of this. Prior to 
>> the FDA warning that it can cause deadly pulmonary hypertension no one was 
>> paying attention to folks that were already on it.  When one of our CML 
>> warriors started feeling weak and dizzy, even her doctor dismissed it, for 
>> months, until she collapsed and woke up in the cardiac care unit.  She 
>> almost died, and had a long road to recovery. Her spreading the word saved 
>> other lives!   Everyone should know their meds, know what the symptoms are 
>> of the dangerous side effects and alert their doctor if those symptoms 
>> present. It doesn't hurt to tell the doctor you are concerned it is a side 
>> effect of your meds, you would be surprised how many doctors are not 
>> familiar with the side effects of the meds they are prescribing!  
>> 
>> I think those of us living with cancer or any other chronic disease are kind 
>> of stoic and don't whine a lot...but sometimes we should.
>> 
>> Note to Marty...since I am sure you are reading this...you are in my 
>> prayers!!
>> 
>> Fight on,
>> Peg
>> 
>> -- 
>> -- 
>> [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-unsubscr...@googlegroups.com
>> For more options, visit this group at http://groups.google.com/group/CMLHope
>> --- 
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>> For more options, visit https://groups.google.com/d/optout.
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>> -
>>  
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
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>>

[CMLHope] Re: CMLHope] Re: Dizzy all day

2016-03-21 Thread Marty Gartenberg

Thanks

18's

Marty

On Monday, March 21, 2016, Myvety2k via CMLHope 
wrote:

> Marty, got my fingers crossed.
>
> greenie
>
> In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time,
> wa2...@gmail.com 
> writes:
>
> Hi Beth,
>
> I am actually still in the hospital but maybe today I will be getting out
> just have to wait for the doctors when they make their rounds. I will keep
> everyone updated.
>
> 18's,
>
> Marty
>
> bkbarney via CMLHope  > wrote:
> Dear Marty,
> So glad you are out of the hospital! And Peg, you are so right about what
> you said to Jeanie...Hope everyone is doing as well as possible. Thinking
> of all of you...love, and 18's Beth
>
> -Original Message-
> From: 'Icandoallttc' via CMLHope  >
> To: peg  >
> Cc: CMLHope  >
> Sent: Fri, Mar 18, 2016 11:19 am
> Subject: [CMLHope] Re: Dizzy all day
>
> Thanks Peg,
> You are so right.  I was reading the side effects of ponatinib and i was
> thinking I have to take this??!
> Well yes I do and blood clots and heart problems are right up there high
> on the list.
> My potassium tends to be high also and you can get heart problems from
> that.
> Just have to fight on and thanks again.
>
>
>
> My Motto: Faith and Pills❤️
> With Jeanie 18,s Chi
> 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 Mar 18, 2016, at 12:00 PM, peg  > wrote:
>
>
> Hi Jeanie,
>
> I was traveling on business this week and just checked in and am wondering
> if you are feeling better?
>
> I had to caution another cancer patient recently not to write off sudden
> changes as normal...caused by treatment, age, etc.  The new generation of
> meds to treat CML and other cancers can have side effects that can be
> deadly if not caught in time.  Sprycel was a really good example of this.
> Prior to the FDA warning that it can cause deadly pulmonary hypertension no
> one was paying attention to folks that were already on it.  When one of our
> CML warriors started feeling weak and dizzy, even her doctor dismissed it,
> for months, until she collapsed and woke up in the cardiac care unit.  She
> almost died, and had a long road to recovery. Her spreading the word saved
> other lives!   Everyone should know their meds, know what the symptoms are
> of the dangerous side effects and alert their doctor if those symptoms
> present. It doesn't hurt to tell the doctor you are concerned it is a side
> effect of your meds, you would be surprised how many doctors are not
> familiar with the side effects of the meds they are prescribing!
>
> I think those of us living with cancer or any other chronic disease are
> kind of stoic and don't whine a lot...but sometimes we should.
>
> *Note to Marty...since I am sure you are reading this...you are in my
> prayers!!*
>
> Fight on,
> Peg
>
> --
> --
> [CMLHope]
> A support group of http://cmlhope.com
> -
>
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Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

2016-03-21 Thread Myvety2k via CMLHope

Marty, got my fingers crossed.
 
greenie
 
 
In a message dated 3/21/2016 8:41:14 A.M. Eastern Daylight Time,  
wa2...@gmail.com writes:

Hi Beth,  

I am actually still in the hospital but maybe today I will be getting  out 
just have to wait for the doctors when they make their rounds. I will keep  
everyone updated.

18's,

Marty

bkbarney via CMLHope   wrote:
Dear Marty,  
So glad you are out of the hospital! And Peg, you are so right about what  
you said to Jeanie...Hope everyone is doing as well as possible. Thinking of 
 all of you...love, and 18's Beth

-Original  Message-
From: 'Icandoallttc' via CMLHope  
To: peg 
Cc:  CMLHope 
Sent: Fri, Mar 18, 2016 11:19  am
Subject: [CMLHope] Re: Dizzy all day


 
Thanks Peg,
You are so right.  I was reading the side effects of ponatinib and i  was 
thinking I have to take this??!
Well yes I do and blood clots and heart problems are right up there high  
on the list. 
My potassium tends to be high also and you can get heart problems from  
that. 
Just have to fight on and thanks again. 




My Motto: Faith and Pills❤️  
With Jeanie 18,s Chi  
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 Mar 18, 2016, at 12:00 PM, peg <_peg.hss@live.com_ 
(mailto:peg@live.com) > wrote:





Hi Jeanie,   


I was traveling on business this week and just checked in and am  wondering 
if you are feeling better?  


I had to caution another cancer patient recently not to write off  sudden 
changes as normal...caused by treatment, age, etc.  The new  generation of 
meds to treat CML and other cancers can have side effects that  can be deadly 
if not caught in time.  Sprycel was a really good example  of this. Prior to 
the FDA warning that it can cause deadly pulmonary  hypertension no one was 
paying attention to folks that were already on it.  When one of our CML 
warriors started feeling weak and dizzy, even her  doctor dismissed it, for 
months, until she collapsed and woke up in the  cardiac care unit.  She almost 
died, and had a long road to recovery.  Her spreading the word saved other 
lives!   Everyone should know their  meds, know what the symptoms are of the 
dangerous side effects and alert  their doctor if those symptoms present. It 
doesn't hurt to tell the doctor  you are concerned it is a side effect of 
your meds, you would be surprised  how many doctors are not familiar with the 
side effects of the meds they are  prescribing!  


I think those of us living with cancer or any other chronic disease are  
kind of stoic and don't whine a lot...but sometimes we should.  


Note to Marty...since I am sure you are reading this...you are in my  
prayers!!


Fight on,
Peg







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[CMLHope] Re: CMLHope] Re: Dizzy all day

2016-03-21 Thread Martin Gartenberg

Hi Beth, 

I am actually still in the hospital but maybe today I will be getting out just 
have to wait for the doctors when they make their rounds. I will keep everyone 
updated.

18's,

Marty

bkbarney via CMLHope  wrote:
>Dear Marty, 
>
>So glad you are out of the hospital! And Peg, you are so right about what you 
>said to Jeanie...Hope everyone is doing as well as possible. Thinking of all 
>of you...love, and 18's Beth
>
>-Original Message-
>From: 'Icandoallttc' via CMLHope 
>To: peg 
>Cc: CMLHope 
>Sent: Fri, Mar 18, 2016 11:19 am
>Subject: [CMLHope] Re: Dizzy all day
>
>Thanks Peg,
>
>You are so right.  I was reading the side effects of ponatinib and i was 
>thinking I have to take this??!
>
>Well yes I do and blood clots and heart problems are right up there high on 
>the list. 
>
>My potassium tends to be high also and you can get heart problems from that. 
>
>Just have to fight on and thanks again. 
>
>
>
>
>My Motto: Faith and Pills❤️ 
>
>With Jeanie 18,s Chi 
>
>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 Mar 18, 2016, at 12:00 PM, peg  wrote:
>
>
>Hi Jeanie,  
>
>
>I was traveling on business this week and just checked in and am wondering if 
>you are feeling better?  
>
>
>I had to caution another cancer patient recently not to write off sudden 
>changes as normal...caused by treatment, age, etc.  The new generation of meds 
>to treat CML and other cancers can have side effects that can be deadly if not 
>caught in time.  Sprycel was a really good example of this. Prior to the FDA 
>warning that it can cause deadly pulmonary hypertension no one was paying 
>attention to folks that were already on it.  When one of our CML warriors 
>started feeling weak and dizzy, even her doctor dismissed it, for months, 
>until she collapsed and woke up in the cardiac care unit.  She almost died, 
>and had a long road to recovery. Her spreading the word saved other lives!   
>Everyone should know their meds, know what the symptoms are of the dangerous 
>side effects and alert their doctor if those symptoms present. It doesn't hurt 
>to tell the doctor you are concerned it is a side effect of your meds, you 
>would be surprised how many doctors are not familiar with the side effects of 
>the meds they are prescribing!  
>
>
>I think those of us living with cancer or any other chronic disease are kind 
>of stoic and don't whine a lot...but sometimes we should. 
>
>
>Note to Marty...since I am sure you are reading this...you are in my prayers!!
>
>
>Fight on,
>
>Peg
>
>-- 
>-- 
>[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-unsubscr...@googlegroups.com
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>For more options, visit https://groups.google.com/d/optout.
>
>-- 
>-- 
>[CMLHope]
>A support group of http://cmlhope.com
>-
> 
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Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

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Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

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[CMLHope] Re: CMLHope] Re: Dizzy all day

Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

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Re: [CMLHope] Re: CMLHope] Re: Dizzy all day

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[CMLHope] Re: CMLHope] Re: Dizzy all day

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