Re: [CMLHope] Platelets

['Susan Zimmerman' via CMLHope]

Pete,
When I was at Moffitt from 2005 til 2007, I saw Dr. Javier Panilla.  He is 
GREAT!!!

18'S,

Susan F. Zimmerman




-Original Message-
From: Pete Pabon 
To: cmlhope 
Sent: Mon, Jun 15, 2015 12:36 am
Subject: RE: [CMLHope] Platelets


 
  Jeanie,who do you see at Moffitt?  
   
   
   
   

Date: Sun, 14 Jun 2015 20:23:18 -0700
From: rbhuffm...@gmail.com
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] Platelets


 
I do understand Skip.  I have a sister that has been anemic all her life, and 
she is doing fine at 5.  I have been having problems every time I get close 
7.9.Just again shows how we each find our spot that works for us. 
 
  
 
 
Richard H.  
  
On Sunday, June 14, 2015 at 8:08:33 AM UTC-5, easyskip_2002 wrote: 
 
  
   

 

I have had very low platelets and ANC and RBC and plus some others plus high 
Ferritin counts over 7000 most weeks I have critical platelets and white counts 
of 1.2 or up to 2.01  neut 0.20 yet with no meds I have 0.8 log reduction. I 
fell fine been doing this for 37 years I tell you this as I want all to know 
Low counts should looked but not to spoil your day  Zevie was astounded when I 
send him on of my blood reports with 1.0 white 88 RBC 0zero platelets  ANC of 
0.20  
hooe this helps  
  
Skip Dx 1977   
   Sent from Yahoo Mail on Android   

   
 
  
   

From:"'Icandoallttc' via CMLHope" <
cml...@googlegroups.com>
Date:Tue, May 19, 2015 at 9:01 AM
Subject:Re: [CMLHope] Platelets

   

I also have problems with platelets and WBC.   They go way too high.  Only on 
Tasigna did they drop too Lowe.  Go figure.  We are all unique in how we 
respond to the tkis.  
   
Moffitt tomorrow.  I am hoping for good results.  
   
5 months on ponatinib.  

Prayers & Blessings Jeanie 18,s
Dx 1/2004

Started Gleevec 2/2004

Started Tasigna  9/2009

Started Sprycel 11/2009

Started Ponatinib January 2015
   
   

On May 17, 2015, at 7:08 AM, Gopalsamy Ragavan <
graga...@gmail.com> wrote:

   
   

 
I have problems with platelet count. Diagnosed in 2012 Started with Gleevec. 
Now with Sprycel. With Sprycel, platelet counts go down. Started with 140mg per 
day and now taking 50mg per day. One moth of Sprycel medication and two months 
rest for platelet recovery. This is how current medication is going on. I take 
papaya leaf tea everyday to improve platelets.  
 
 
  
  
On Sat, May 16, 2015 at 9:29 AM, ANGELYN ESDERS
 wrote:   
   

 
  
Does anyone have problems maintaining their platelet level? 
 
  
Mine fall down to almost ZERO, which is a dangerous place to be. I am covered 
with big purple bruises and petechiae and look like I have been in a bar fight. 
Even a light scratch on my skin brings the blood to the surface. It is called 
Thrombocytopenia. My red cells also plummet and I had 6 blood transfusions  
last week.  
  
My confidence waivers a little as it seems they don't really know what to do 
about me. I have lots of complications. More specialists on the horizon, but 
every step forward is followed by 3 steps back. I am on massive prednisone for 
the moment.  
  
Can anyone share  info on this?  
  
Angie in Canada  
  
Gleevec pioneer since 2001  
 

 
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Re: [CMLHope] Going into 7th month on ponatinib

['Icandoallttc' via CMLHope]

Thanks John
The one pill is just keeping my blood in the normal range. It's funny how we 
are all different. 

Prayers & Blessings Jeanie 🐟🐟18,s
Dx 1/2004
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jun 28, 2015, at 8:02 PM, John Barrons  wrote:
> 
> Hi Just to clarify, I am on one only for the two week period. I don't feel 
> any different when I am off the pill nor when I am on the pill except for the 
> changes in hemoglobin. John 
> 
> Sent from my iPad
> 
>> On Jun 28, 2015, at 1:40 PM, 'Icandoallttc' via CMLHope 
>>  wrote:
>> 
>> John how do you feel when you are off the meds?  Can you tell the 
>> difference??   Thanks. 
>> 
>> Prayers & Blessings Jeanie 🐟🐟18,s
>> Dx 1/2004
>> Started Gleevec 2/2004
>> Started Tasigna  9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib January 2015
>> Dr Balducci Moffitt Cancer Center
>> 
>>> On Jun 27, 2015, at 6:49 PM, John Barrons  wrote:
>>> 
>>> Hi Jeanie and everyone. I have been on ponatinib for almost three years. I 
>>> am only on one pill, 15mg, for two weeks. Prior to last Wednesday, I was 
>>> off the pill for three weeks. I have noticed my spleen has increased in 
>>> size and is a little sore. As you all know it is on the left side, so in 
>>> certain positions it is a little uncomfortable. It will decrease when my 
>>> platelet number decreases. 
>>> John B
>>> 
>>> 
>>> Sent from my iPad
>>> 
 On Jun 27, 2015, at 5:16 PM, 'Icandoallttc' via CMLHope 
  wrote:
 
 Happy Saturday to all.  Going into my 7th month on ponatinib.  I'm doing 
 well and hanging in their with my faith and pills.  I think John and I are 
 the only ones on ponatinib.  Is that right?
 
 I still have my side pain and will have another ct scan in Sept.   
 
 Keep praying for those miracles group. 
 
 Prayers & Blessings Jeanie 🐟🐟18,s
 Dx 1/2004
 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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