Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic

2016-03-18 Thread 'Icandoallttc' via CMLHope 
Hi Sue and i really enjoyed the video.  It was amazing!! 
Thanks. 

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 4, 2016, at 5:19 AM, Sue  wrote:
> 
> Lottie and Zavie were my mentors
>  
> I was #1197 in the Zavies Zero Club
>  
> So Kristen I was somewhat behind your #69
>  
> I miss   Lotties friendship and Zavies Photos he would send each week
>  
> The importance of the photos – were two fold – to see that Zavie was AOK but 
> also that he was living with CML and not Living It his CML – Great lesson
>  
> I enjoyed his Yippee Yahoos when one became PCRU – [ Now named MRD – Minimum 
> Residual Disease ]  even when PCRU
>  
> I was an Ambassador for Ride to Conquer Cancer and reference both Lottie and 
> Zavie in my speech to riders
>  
> https://www.youtube.com/watch?v=4DhL8FQLRKw
>  
> You may like to listen
>  
> Those of us who are the living are certainly those two guys LEGACY
>  
> Sue 
> (Australia)
>   
>  
>  
>  
> From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] 
> Sent: Friday, 4 March 2016 6:13 PM
> To: Digest recipients 
> Subject: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic
>  
> cmlhope@googlegroups.com
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> · Digest for cmlhope@googlegroups.com - 13 updates in 3 topics - 1 
> Update
> Digest for cmlhope@googlegroups.com - 13 updates in 3 topics
> Kristin Lieberman : Mar 03 07:07AM -0800 
> 
> I remember Lottie and Jimmy. I adored Zavie, and he called me a few times in 
> the old days just to check on me. I was #69 in Zavie's Zero Club.
>  
> Sent from my iPhone
>  
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[CMLHope] Re: Dizzy all day

2016-03-18 Thread peg 

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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