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

[AAFAAmy]

Good one, Norm!  

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

[Jamie Tufariello]

On Monday, July 13, 2015, Peter  wrote:

> Yes, there certainly are many different opinions on this subject, ranging
> from "No way" to "No problem". I wish somebody would come up with a
> definite answer!
> The truth is probably exactly what my doc told me: "There are no studies
> or data, nobody knows. Therefore no doctor wants to stick his/her head out."
> It is encouraging that Dr. Druker is weighing in on the "yes" side.
> Common sense says that it all depends on how good your immune system is.
> But how can we get a handle on that?
> Simply looking at hemoglobin and white count somehow does not convince me.
>
> Peter
>
> On Sunday, July 12, 2015 at 9:58:06 PM UTC-4, educatorsusan wrote:
>>
>> Victoria:
>>
>> Dr. Brian Druker just told me about a month ago that if your hemoglobin
>> and white blood cells are in the good range, it is okay to consider taking
>> the shingles vaccine.
>>
>> There seems to be a lot of controversy out there on this topic.  Make
>> sure that the information you are receiving is from a specialist.
>>
>> Hugs,
>> Susan Rosenthal
>>
>
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Re: [CMLHope] Digest for cml...@googlegroups.com - 1 update in 1 topic

[Marty Gartenberg]

Hi Susan,

Glad to hear it. A most healthy and happy New Year to you and all of your
loved ones.

18's,

Marty

On Tue, Dec 27, 2016 at 10:52 PM, 'Susan Rosenthal' via CMLHope <
cmlhope@googlegroups.com> wrote:

> I am one of those 50% people not on Gleevec.  I was on Gleevec for almost
> 13 years.  I go out to Portland, Oregon, and see Dr. Druker all the way
> from Miami.
>
> I've been off Gleevec now since October 2, 2015.  I've remained
> undetectable so far.
>
> Hugs,
> Susan Rosenthal
>
> Have a wonderful day
>
> On Dec 27, 2016, at 9:06 PM, Marty Gartenberg  wrote:
>
> Jeanie,
>
> Another year is about to come upon us. I'm sure that you will always
> remember January 2004 that's just about fourteen years and you are still
> here! If it wasn't for any of the TKI's then would have happened?
>
> Well I think that your catching up with me. You are 14 years out and I am
> 27 years out. A difference of 13 years give or take. Now your catching up.
> And I noticed that you are also using those two numbers as well. They are
> called LIFE.
>
> 18's,
>
> Jeanie
>
> Marty
>
> On Tue, Dec 27, 2016 at 10:15 AM, 'Jeanie' via CMLHope <
> cmlhope@googlegroups.com> wrote:
>
>> I have never been able to quit tkis. My counts go sky high and I am in
>> accelerated phase quickly.  Good luck to those who can.
>>
>> My Motto:
>> Faith and Pills
>> With Love
>> 18's
>> Dx 1/2004 CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna 9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib 1/2015
>> Doctor Balducci Moffitt Cancer Center
>>
>> On Dec 15, 2016, at 12:18 AM, Richard H  wrote:
>>
>> I understand 50%  isn't the best in the results, but when I had a choice
>> of problems with Gleevec  or going without  you might last only 2 years.  I
>> took the break and stayed off Gleevec for 6 1/2 years.  Everyone must look
>> at their situation and if ONC agrees to monitor your counts, you can be
>> possibly be a winner of those that helps make that # go higher.  Just my
>> personal approach to try and increase the the winning side of this war with
>> CML.  My relapse was caught early on and the regular 400 mg took right over
>> and no big Numbers have shown up since my diagnosis in 2002.
>>
>> 18's
>>
>> Richard H.
>>
>> On Wednesday, December 14, 2016 at 2:14:01 PM UTC-6, Vivi wrote:
>>>
>>> I'm not quite satisfied with 50%...rather remain on Gleevec and be
>>> certain I don't relapse.
>>>
>>> On Sun, Nov 6, 2016 at 5:12 AM,  wrote:
>>>
 cmlhope@googlegroups.com
 
  Google
 Groups
 
 
 Topic digest
 View all topics
 

- This was posted on our Yahoo site - WE ALL NEED TO READ THE
ARTICLE!

 <#m_-4647447971261697116_m_3512663305719614869_CAEDTp2pMb37fD_qtv9Si4bFF1XeXx9qt7jbn3xVYuBYtNJFs_Q@mail.gmail.com_m_-3285202243326054360_group_thread_0>
- 1 Update

 This was posted on our Yahoo site - WE ALL NEED TO READ THE
 ARTICLE!
 
 Richard H : Nov 05 09:42PM -0700

 Ryan Romero
 Today at 12:11 PM

 -
 -

 Hi everyone!!!

 I hope you all are doing well and continuing the fight!

 I wanted to share with you all a fantastic front page article in CURE
 Magazine and also ask you if anyone has tried or had success with the
 LAST
 Trial. I know some of you have asked your oncologists about this in the
 past but never say any updates.

 For those that don't know what this trial is; after 3-4 years of pcrU
 on
 TKIs (your chemo- gleevec for me), they are pulling people off
 gradually.
 Reports show 50% remain pcrU !!!

 Today is a bad day for me. I'm tried of the side effects of treatment
 and
 overall just tired. Needing some inspiration I picked up my CURE
 Magaizine
 and noticed that CML was on the front page. Here's a link below.

 http://www.curetoday.com/publications/cure/2016/hematology-2
 -2016/targeted-power-improving-prognoses-for-patients-with-
 chronic-myeloid-leukemia
 .


 Ryan "chemo-sabi"
 dx-10.27.2009
 Interferon-10/09-12/09
 Gleevec-400mg 1xd-12/09-02-11
 BCR-ABL- undetectable 2/2011
 02/2011-Today- 400mg gleevec
 Back to top
 <#m_-4647447971261697116_m_3512663305719614869_CAEDTp2pMb37fD_qtv9Si4bFF1XeXx9qt7jbn3xVYuBYtNJFs_Q@mail.gmail.com_m_-3285202243326054360_digest_top>
 You received this digest because you're subscribed to updates for this
 

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

['Susan Rosenthal' via CMLHope]

I am one of those 50% people not on Gleevec.  I was on Gleevec for almost 13 
years.  I go out to Portland, Oregon, and see Dr. Druker all the way from Miami.

I've been off Gleevec now since October 2, 2015.  I've remained undetectable so 
far.

Hugs,
Susan Rosenthal

Have a wonderful day

> On Dec 27, 2016, at 9:06 PM, Marty Gartenberg  wrote:
> 
> Jeanie,
> 
> Another year is about to come upon us. I'm sure that you will always remember 
> January 2004 that's just about fourteen years and you are still here! If it 
> wasn't for any of the TKI's then would have happened?
> 
> Well I think that your catching up with me. You are 14 years out and I am 27 
> years out. A difference of 13 years give or take. Now your catching up. And I 
> noticed that you are also using those two numbers as well. They are called 
> LIFE.
> 
> 18's,
> 
> Jeanie
> 
> Marty
> 
>> On Tue, Dec 27, 2016 at 10:15 AM, 'Jeanie' via CMLHope 
>>  wrote:
>> I have never been able to quit tkis. My counts go sky high and I am in 
>> accelerated phase quickly.  Good luck to those who can.  
>> 
>> My Motto:
>> Faith and Pills
>> With Love
>> 18's
>> Dx 1/2004 CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna 9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib 1/2015
>> Doctor Balducci Moffitt Cancer Center 
>> 
>>> On Dec 15, 2016, at 12:18 AM, Richard H  wrote:
>>> 
>>> I understand 50%  isn't the best in the results, but when I had a choice of 
>>> problems with Gleevec  or going without  you might last only 2 years.  I 
>>> took the break and stayed off Gleevec for 6 1/2 years.  Everyone must look 
>>> at their situation and if ONC agrees to monitor your counts, you can be 
>>> possibly be a winner of those that helps make that # go higher.  Just my 
>>> personal approach to try and increase the the winning side of this war with 
>>> CML.  My relapse was caught early on and the regular 400 mg took right over 
>>> and no big Numbers have shown up since my diagnosis in 2002.
>>> 
>>> 18's
>>> 
>>> Richard H.   
>>> 
 On Wednesday, December 14, 2016 at 2:14:01 PM UTC-6, Vivi wrote:
 I'm not quite satisfied with 50%...rather remain on Gleevec and be certain 
 I don't relapse.
 
> On Sun, Nov 6, 2016 at 5:12 AM,  wrote:
> 
> cmlhope@googlegroups.com  Google Groups  
> Topic digest 
> View all topics
> This was posted on our Yahoo site - WE ALL NEED TO READ THE ARTICLE! 
> - 1 Update
> This was posted on our Yahoo site - WE ALL NEED TO READ THE ARTICLE!  
>
> Richard H : Nov 05 09:42PM -0700 
> 
> Ryan Romero
> Today at 12:11 PM
>  
> - 
> - 
> 
> Hi everyone!!! 
>  
> I hope you all are doing well and continuing the fight! 
>  
> I wanted to share with you all a fantastic front page article in CURE 
> Magazine and also ask you if anyone has tried or had success with the 
> LAST 
> Trial. I know some of you have asked your oncologists about this in the 
> past but never say any updates. 
>  
> For those that don't know what this trial is; after 3-4 years of pcrU on 
> TKIs (your chemo- gleevec for me), they are pulling people off gradually. 
> Reports show 50% remain pcrU !!!
>  
> Today is a bad day for me. I'm tried of the side effects of treatment and 
> overall just tired. Needing some inspiration I picked up my CURE 
> Magaizine 
> and noticed that CML was on the front page. Here's a link below. 
>  
> http://www.curetoday.com/publications/cure/2016/hematology-2-2016/targeted-power-improving-prognoses-for-patients-with-chronic-myeloid-leukemia
> . 
>  
>  
> Ryan "chemo-sabi"
> dx-10.27.2009
> Interferon-10/09-12/09
> Gleevec-400mg 1xd-12/09-02-11
> BCR-ABL- undetectable 2/2011
> 02/2011-Today- 400mg gleevec
> Back to top
> You received this digest because you're subscribed to updates for this 
> group. You can change your settings on the group membership page.
> To unsubscribe from this group and stop receiving emails from it send an 
> email to cmlhope+u...@googlegroups.com.
 
>>> 
>>> -- 
>>> -- 
>>> [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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Re: [CMLHope] Digest for cml...@googlegroups.com - 1 update in 1 topic

['Jeanie' via CMLHope]

I have never been able to quit tkis. My counts go sky high and I am in 
accelerated phase quickly.  Good luck to those who can.  

My Motto:
Faith and Pills
With Love
18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/2015
Doctor Balducci Moffitt Cancer Center 

> On Dec 15, 2016, at 12:18 AM, Richard H  wrote:
> 
> I understand 50%  isn't the best in the results, but when I had a choice of 
> problems with Gleevec  or going without  you might last only 2 years.  I took 
> the break and stayed off Gleevec for 6 1/2 years.  Everyone must look at 
> their situation and if ONC agrees to monitor your counts, you can be possibly 
> be a winner of those that helps make that # go higher.  Just my personal 
> approach to try and increase the the winning side of this war with CML.  My 
> relapse was caught early on and the regular 400 mg took right over and no big 
> Numbers have shown up since my diagnosis in 2002.
> 
> 18's
> 
> Richard H.   
> 
>> On Wednesday, December 14, 2016 at 2:14:01 PM UTC-6, Vivi wrote:
>> I'm not quite satisfied with 50%...rather remain on Gleevec and be certain I 
>> don't relapse.
>> 
>>> On Sun, Nov 6, 2016 at 5:12 AM,  wrote:
>>> 
>>> cmlhope@googlegroups.comGoogle Groups  
>>> Topic digest 
>>> View all topics
>>> This was posted on our Yahoo site - WE ALL NEED TO READ THE ARTICLE! - 
>>> 1 Update
>>> This was posted on our Yahoo site - WE ALL NEED TO READ THE ARTICLE!
>>>  
>>> Richard H : Nov 05 09:42PM -0700 
>>> 
>>> Ryan Romero
>>> Today at 12:11 PM
>>>  
>>> - 
>>> - 
>>> 
>>> Hi everyone!!! 
>>>  
>>> I hope you all are doing well and continuing the fight! 
>>>  
>>> I wanted to share with you all a fantastic front page article in CURE 
>>> Magazine and also ask you if anyone has tried or had success with the LAST 
>>> Trial. I know some of you have asked your oncologists about this in the 
>>> past but never say any updates. 
>>>  
>>> For those that don't know what this trial is; after 3-4 years of pcrU on 
>>> TKIs (your chemo- gleevec for me), they are pulling people off gradually. 
>>> Reports show 50% remain pcrU !!!
>>>  
>>> Today is a bad day for me. I'm tried of the side effects of treatment and 
>>> overall just tired. Needing some inspiration I picked up my CURE Magaizine 
>>> and noticed that CML was on the front page. Here's a link below. 
>>>  
>>> http://www.curetoday.com/publications/cure/2016/hematology-2-2016/targeted-power-improving-prognoses-for-patients-with-chronic-myeloid-leukemia
>>> . 
>>>  
>>>  
>>> Ryan "chemo-sabi"
>>> dx-10.27.2009
>>> Interferon-10/09-12/09
>>> Gleevec-400mg 1xd-12/09-02-11
>>> BCR-ABL- undetectable 2/2011
>>> 02/2011-Today- 400mg gleevec
>>> Back to top
>>> You received this digest because you're subscribed to updates for this 
>>> group. You can change your settings on the group membership page.
>>> To unsubscribe from this group and stop receiving emails from it send an 
>>> email to cmlhope+u...@googlegroups.com.
> 
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Re: [CMLHope] Digest for cml...@googlegroups.com - 1 update in 1 topic

[Peter]

Yes, there certainly are many different opinions on this subject, ranging 
from No way to No problem. I wish somebody would come up with a 
definite answer!
The truth is probably exactly what my doc told me: There are no studies or 
data, nobody knows. Therefore no doctor wants to stick his/her head out.
It is encouraging that Dr. Druker is weighing in on the yes side.
Common sense says that it all depends on how good your immune system is. 
But how can we get a handle on that?
Simply looking at hemoglobin and white count somehow does not convince me.

Peter

On Sunday, July 12, 2015 at 9:58:06 PM UTC-4, educatorsusan wrote:

 Victoria:

 Dr. Brian Druker just told me about a month ago that if your hemoglobin 
 and white blood cells are in the good range, it is okay to consider taking 
 the shingles vaccine.

 There seems to be a lot of controversy out there on this topic.  Make sure 
 that the information you are receiving is from a specialist.

 Hugs,
 Susan Rosenthal


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