Jeanie, so glad blood is looking good. Hope platelets stay around 150 for 
you..and that you start to feel better on the drug. I go to do my BCR abl on 
Monday.  B

Susan, oh no...I will being seeing Dr. Druker on the 23rd.  Darn, of course, I 
will be in Oregon while you are in Chicago...murphies law....next time then! if 
my schedule for Dr. Druker changes, I will let you know. 


Warm regards, 
18'sBeth

-----Original Message-----
From: 'Icandoallttc' via CMLHope <[email protected]>
To: cmlhope <[email protected]>
Sent: Thu, Mar 12, 2015 9:37 am
Subject: [CMLHope] Moffit visit


 
  
Blood is good. Platelets dropping to 133.   Rather them be low than high.  Hope 
everyone is good today.  
 
  
Prayers & Blessings Jeanie 
\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20\uD83D\uDC20.
 18,s 
 
  
On Mar 11, 2015, at 6:26 PM, "'Susan Zimmerman' via CMLHope" <  
[email protected]> wrote:  
  
 
 
  
   Dear Beth,     
     
     
     
I come on April 23rd again at 10:30am my time, 11:30 Chicago time for an hour 
and half or so....can you meet after that?  My husband usually brings me, so 
you can meet him, too!  Where would you like to meet?  I will be at 
Northwestern which is downtown, so you name it!  Dr. Druker....you go out there 
when in April?  I'm happy you get to go....my friend Sharon Kraby also flies 
from Florida to him regularly.....     
      
 Marcie, thanks for the shout-out!  Sure hope your bone pain is gone and you 
are in the pink again.....is it?  Do I remember you lowered your mg of gleevec? 
 That should help, did it?    
     
     
     
     
     
      
18's,      
       
Susan F. Zimmerman      
       
       
       
      
      
      
-----Original Message-----      
 From: bkbarney via CMLHope <      [email protected]>      
 To: cmlhope <      [email protected]>      
 Sent: Wed, Mar 11, 2015 1:34 pm      
 Subject: Re: [CMLHope] CML visit      
       
       
        Susan, I would love to meet with you for a tea or coffee while you are 
in Chicago if you are up for it. Let me know. I am going to Dr. Druker in 
April, hopefully our trip times won't overlap. Thanks for your prayers..always 
so helpful...and Marcie, you have a great day too!          
 18"s Beth          
          
          
          
 -----Original Message-----           
 From: 'Marcie Goodman' via CMLHope <          [email protected]>        
   
 To: cmlhope <          [email protected]>           
 Sent: Tue, Mar 10, 2015 9:28 pm           
 Subject: Re: [CMLHope] CML visit           
           
           
            
             
 Susan,             
             
              
             
             
 So good to hear from you and I know how good it is to see the snow melt away. 
Take good care and thanks for always lifting us up in prayer.              
             
              
             
             
 Marcie              
              
 Sent from my iPhone             
             
              
 On Mar 10, 2015, at 10:10 PM, 'Susan Zimmerman' via CMLHope <              
[email protected]> wrote:              
              
             
             
              
               Dear Greenie,                
                 
                
                
 Thinking of you and hoping for a good report.  This is just another small bump 
in the road.  I am praying extra for you.  God bless and keep us posted.        
          
                
                 
                
                
 I am thinking about all of you and pray for good news.  The great news is we 
get up every day and I really think we might see Spring soon!  All our snow is 
melting FAST here in northern Indiana....50 for most of the week.  My dog is 
elated she can roam the dead grass instead of the snow again!                
                
                 
                
                
 Beth will await your reports' findings as well.  I don't go to Chicago until 
mid-April for more tests.  So it will be six months in between tests, which is 
not recommended.  But they screwed up the last test, so I'm just patiently 
waiting....                 
                 
                 
 18's and good sleep to all of you,                 
                 
                  
                  
 Susan                   
                  
                   
                  
                 
                 
 -----Original Message-----                  
 From: bkbarney via CMLHope <                  [email protected]>        
          
 To: cmlhope <                  [email protected]>                  
 Sent:  Tue, Mar 10, 2015 5:29 pm                  
 Subject: Re: [CMLHope] CML visit                  
                  
                  
                   Dear Greenie, I hope your test results come out O.K., and 
they can find a simple explanation for your weight loss. So sorry you are going 
through the stress of all this...thinking of you....                    
                     
                    
                    
 And Richard, as Sherri said, great news about your hemoglobin and the 
collaboration of your docs on your behalf. Colonoscopy sounds reasonable...just 
to rule out and give you peace of mind. Are you more tired than usual???        
            
                    
                     
                    
                    
 Stay positive and stay strong. Keep us posted...                     
 And Sherri, so sorry you had to have a transfusion, but I hope it made you 
feel better and stabilized your counts..                    
                    
                     
                    
                    
 Still praying for Marty.                    
                    
 Jeannie, I know it's been a rough two months on ponatinib and you have felt 
miserable...I hope it gets better with time, and maybe, you can take less of a 
dose in months, years to come, if your doc recommends it to help you with the 
toxicity. thinking of you...                    
                    
                     
                    
                    
 Not a lot new to report here....still working on understanding and treating 
muscle/ weakness/ elevated CPK etc...issues..will do more blood work to rule 
out any other possible cancers lurking, but I don't think that is it..at least 
I, like Greenie, sure hope not.                    
                    
                     
                    
                    
 18's to all                    
                    
                     
                    
                    
 Beth                     
                     
                     
 -----Original Message-----                      
 From: Myvety2k via CMLHope <                      [email protected]>    
                  
 To: cmlhope <                      [email protected]>                   
   
 Sent: Tue, Mar 10, 2015 5:31 am                      
 Subject: Re: [CMLHope] CML visit                      
                      
                      
                       
                                                 
                          Hi  Group, As of last Tuesday I have lost 5 pounds 
and I don't know why.  Been eating O. K. so I went to my Reg. Doctor yesterday 
and I'm going over to get some blood work at 7 a.m.  Comprehensive metabolic 
panel, cbc (no diff), vitamin B12 level and TSH, Ultrasensitive.  Also he 
want's me to have a colonoscopy to screen for colon cancer Friday.  I really 
don't need 2 different kinds of cancer so I'm worried.  Will let you all know 
what happens.                         
                         
                                                    
                         
                          greenie                         
                         
                           
                         
                          
 In a message dated 3/10/2015 4:00:08 A.M. Eastern Daylight Time,               
            [email protected] writes:                          
                          
                                                       
                             
                              Richard,  That is great news about the your 
haemoglobin. I also think it's great that your drs are talking to one another.  
That is so important.
 Last week, I had to get a transfusion as my counts were so low. I went to my 
onc and he did the usual blood draw and my WBC was 2.4.  That was enough to 
send me over to the hospital for type and cross match and a transfusion. 
 
                              
                             
                              I too am eager to hear about Marty and pray for 
him everyday.  
 
                              
                             
                              Sherri                               
                             
                            
                            
                             
                             
 On Mon, Mar 9, 2015 at 11:19 PM, 'Marcie Goodman' via CMLHope                  
            <[email protected]> wrote:                              
                              
                               
                                
 Richard, excellent news and I'm happy to hear that your hemoglobin has 
stabilized.  Glad that your doctors are in sync, too, because that will 
certainly make your life easier. Yay!                                
                                
                                 
                                
                                
 Marcie                                 
                                 
 Sent from my iPhone                                
                                
                                 
                                  
                                   
 On Mar 10, 2015, at 12:15 AM, Richard H <                                   
[email protected]> wrote:                                   
                                   
                                  
                                  
                                   
                                    
                                     
                                      I visited my VA ONC today and both ONCs 
are bck on the same page.  The better news is it appears that my hemoglobin has 
stabilized at 10.5. we are going to move forward with the testing program until 
the end of May.  Another piece of news that makes me very happy is that both 
ONC's works at Kansas University Cancer Center. The VA contracts it's Doctors 
and Fellows (Doctors in training).  They can access all my records at both 
offices with the new Cerner Medical Systems that are being installed world 
wide.                                      
                                      
 I am anxiously waiting for more news from Marty, and him keeping him my 
prayers.                                      
                                      
 Richard H.                                      
                                     
                                    
                                    
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