[CMLHope] cml and shingles

2015-06-14 Thread Poongothai R 
Richard,
Thanks  for your informative post.

Kothai

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RE: [CMLHope] Platelets

2015-06-14 Thread Pete Pabon 
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 
0.20hooe this helpsSkip Dx 1977
Sent from Yahoo Mail on Android
 From:"'Icandoallttc' via CMLHope" 
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,sDx 1/2004Started Gleevec 2/2004Started Tasigna 
 9/2009Started Sprycel 11/2009Started Ponatinib January 2015
On May 17, 2015, at 7:08 AM, Gopalsamy Ragavan  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 
CanadaGleevec pioneer since 2001




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Re: [CMLHope] Platelets

2015-06-14 Thread Richard H 
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"  >
> *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  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] Re:

2015-06-14 Thread Richard H 
Yes, That is the rule that I was given for Flu Vaccine in the US. .  I also 
do check to be sure every year.  I am not real sure about it changing to 
every 5 years.

On Sunday, June 14, 2015 at 9:06:55 AM UTC-5, Icandoallttc wrote:
>
> Do you mean no more flu shots?  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
>
> On Jun 13, 2015, at 11:47 PM, Richard H > 
> wrote:
>
> Yes, I had the Shingles shot.  I was not taking Gleevec at that time, but 
> it was approved by my ONC.  I have also had all the Flu shots thru age 
> 69, and they (nurse worked with American Red Cross) and the Drs. say no 
> more needed there.
>
> Richard H.
>
> On Saturday, June 13, 2015 at 1:28:03 AM UTC-5, Poongothai Ramasamy wrote:
>
>>
>>
>>
>>
>> *Thanks Marty for the information you have shared.Kothai.Pls share anyone 
>> in the group has had Shingles vaccine *
>>  
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Re: [CMLHope] Platelets

2015-06-14 Thread ANGELYN ESDERS 
THIRTY-SEVEN years? Awesome! Congratulations, Skip. 
  From: Marty Gartenberg 
 To: cmlhope@googlegroups.com 
 Sent: Sunday, June 14, 2015 11:07 AM
 Subject: Re: [CMLHope] Platelets
   
Hi Skip,
With all that you have been through and still going through you are the longest 
surviving CML patient that I know of. 37 years and counting, but who is 
counting, you just keep on going on.
This is for you to continue on 18's dear Skip.
Marty
On Sun, Jun 14, 2015 at 9:05 AM, 'Skip Duffie' via CMLHope 
 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 
0.20hooe this helpsSkip Dx 1977
Sent from Yahoo Mail on Android 
|  From:"'Icandoallttc' via CMLHope" 
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,sDx 1/2004Started Gleevec 2/2004Started Tasigna  
9/2009Started Sprycel 11/2009Started Ponatinib January 2015
On May 17, 2015, at 7:08 AM, Gopalsamy Ragavan  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 
CanadaGleevec pioneer since 2001-- 
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Re: [CMLHope] Platelets

2015-06-14 Thread Marty Gartenberg 
Hi Skip,

With all that you have been through and still going through you are the
longest surviving CML patient that I know of. 37 years and counting, but
who is counting, you just keep on going on.

This is for you to continue on 18's dear Skip.

Marty

On Sun, Jun 14, 2015 at 9:05 AM, 'Skip Duffie' via CMLHope <
cmlhope@googlegroups.com> 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" 
> *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 [image: 🐟][image: 🐟]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  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
>>
>> --
>> --
>> [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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>
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Re: [CMLHope] Platelets

2015-06-14 Thread 'Icandoallttc' via CMLHope 
Thanks Skip.  My problem has always been high platelets and WBC.  Go figure 
hehe. 

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 Jun 14, 2015, at 9:05 AM, "'Skip Duffie' via CMLHope" 
>  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" 
> 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  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
>>> -- 
>>> -- 
>>> [CMLHope]
>>> A support group of http://cmlhope.com
>>> -
>>>  
>>> You received this message because you are subscribed to the Google Groups 
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Re: [CMLHope] Re:

2015-06-14 Thread 'Icandoallttc' via CMLHope 
Do you mean no more flu shots?  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

> On Jun 13, 2015, at 11:47 PM, Richard H  wrote:
> 
> Yes, I had the Shingles shot.  I was not taking Gleevec at that time, but it 
> was approved by my ONC.  I have also had all the Flu shots thru age 69, and 
> they (nurse worked with American Red Cross) and the Drs. say no more needed 
> there.
> 
> Richard H.
> 
>> On Saturday, June 13, 2015 at 1:28:03 AM UTC-5, Poongothai Ramasamy wrote:
>> Thanks Marty for the information you have shared.
>> 
>> Kothai.
>> 
>> Pls share anyone in the group has had Shingles vaccine
> 
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Re: [CMLHope] Platelets

2015-06-14 Thread 'Skip Duffie' via CMLHope 

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" 
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  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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