Re: [CMLHope] Digest for cmlhope@googlegroups.com - 4 updates in 1 topic

[Jamie Tufariello]

On Friday, December 22, 2017, 'Dr. Francis Farrell' via CMLHope <
cmlhope@googlegroups.com> wrote:

> What is your bcr/abl?
>
> Sent from my iPad
>
> On Dec 22, 2017, at 5:11 AM, cmlhope@googlegroups.com wrote:
>
> cmlhope@googlegroups.com
> 
>  Google
> Groups
> 
> 
> Topic digest
> View all topics
> 
>
>- Questions, <#m_8872065407184338956_group_thread_0> - 4 Updates
>
> Questions,
> 
> myvet...@aol.com: Dec 21 07:10AM -0500
>
> To all of my CML friends and care givers.
>
> I took a flight to Chicago Dec. 6th to see my cancer Doctor get blood
> work. A week later she called me to tell me that my Hemoglobin was down to
> 10.7 and the norm is 13.0 - 17.5. My Hematocrit was 32.1% and the norm is
> 38.0 - 50 %.
> She wants me to get a Bone Marrow test here in Florida because the airfare
> to Chicago would be $601.00. That's not going to happen. I'm also taking
> Folic acid for the last 6 months (1mg). Folate is 16.7 >=5.9.
>
> She sent my other cancer Doctor down here a fax as to what she wants. I
> have and appointment set for Jan. 2 and talk to him about what to do. (I'm
> worried). She made a note to him that I also have CRI which may be
> Contributory.
>
> So back in 2010 my counts on these two item were Hemoglobin 13.3 and
> Hematocrit was 39.0.
>
> So back in 2015 my counts on these two items were Hemoglobin 12.0 and
> Hematocrit was 36.1. So the counts are coming down and I think it's from
> the
> Gleevec.
>
> My white count is find at 5.8). Iron was 88 (50-212), Iron binding
> capacity was 281 (250 - 450).
>
> So anyone that may have some answers that may make me feel better just hop
> right it and I will very happy to hear from you.
>
> ALSO, I don't know now to do it but AOL is no longer going to be as of Jan
> 15. My new email address is (myvet...@comcast.net) and it's free for me
> and much better.
>
> Any feedback would be deeply appreciated.
>
> Thank you all and have a Very Happy and Safe Holiday.
>
> Greenie for South Fort Myers, FL.
> Marty Gartenberg : Dec 21 11:31AM -0500
>
> Hi Greenie,
>
> First of all, you mention that you are worried. Why may i ask are you so
> worried? When people worry about things that they have little or no control
> over then it not only effects your mind but also your body. I know all
> about this because that is exactly what i used to do and i learned to
> direct my mind in more productive ways. Now just try to relax and get
> yourself going in the right direction.
>
> Now you mention about CRI so read this..
>
> *CRI* (color rendering index) is a measure of how accurately a light source
> illuminates objects' true colors. Our LED lights have *CRI* values of up to
> 98, indicating that our LED lights are able to produce white light that
> approximates halogen or incandescent lighting and natural daylight.
>
> It however has some effect on your kidneys because if they are having
> problems than it is a very simple thing to just go to a Nephrologist and
> see what is happening and why.
>
> As you mentioned the normal Hemoglobin count for women should be from
> around 13 to 17 however not necessarily for men because men don't have
> their time of the month as woman do, so men require a bit less of
> Hemoglobin.
>
> Now a count of 10.7 shows that you are enemic and that can from a verity of
> different things. One being the effects from your TKI being Gleevic which i
> think may be the cause, now mind you I am not a doctor but someone that
> does a lot of research into things that i have already been through.
>
> Another thing would be kidney problems which i kind of doubt because your
> doctors haven't mentioned it. Do you know what your
>
> *Levels* of *creatinine* in the blood reflect both the amount of muscle a
> person has and their amount of kidney function. Most men with normal kidney
> function have approximately 0.6 to 1.2 milligrams/deciliters (mg/dL) of
> *creatinine*. Most women with normal kidney function have between 0.5 to
> 1.1 mg/dL of *creatinine*..
>
> My Creatinine level was 8.2 before i started on my dialysis and i had to go
> onto dialysis which lasted for four years. Then i was able to get a kidney
> transplant from a 20 year old deceased man who was anonymous, and about
> two weeks later it dropped down to 4.1 and kept dropping to where it is now
> at .8 and it now stays there. Remember, i have only one kidney while most
> other people have two kidneys so i know that having only one kidney is
> doing very well for me, and no more dialysis for me anymore.
>
> What you did mention is that your counts are now at 

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 4 updates in 1 topic

[Myvety2k via CMLHope]

I think it came through upside down.   dg
 
 
In a message dated 12/22/2017 7:44:34 A.M. Eastern Standard Time,  
cmlhope@googlegroups.com writes:

 
Here is a copy of my BCR-ABL results.
 
In a message dated 12/22/2017 7:23:33 A.M. Eastern Standard Time,  
cmlhope@googlegroups.com writes:

What  is your bcr/abl?

Sent from my iPad

On Dec 22, 2017, at 5:11 AM, cmlhope@googlegroups.com  wrote:




 
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*   _Questions,_ (mip://14e890a8/default.html#group_thread_0)  - 4 
Updates 

_Questions, _ 
(http://groups.google.com/group/cmlhope/t/353a872ab609d842?utm_source=digest_medium=email)
 
myvet...@aol.com: Dec 21 07:10AM  -0500 

To all of my CML friends and care  givers.

I took a flight to Chicago Dec. 6th to see my cancer  Doctor get blood 
work. A week later she called me to tell me  that my Hemoglobin was down to 
10.7 and the norm is 13.0 - 17.5.  My Hematocrit was 32.1% and the norm is 
38.0 - 50 %.
She  wants me to get a Bone Marrow test here in Florida because the  
airfare 
to Chicago would be $601.00. That's not going to happen.  I'm also taking 
Folic acid for the last 6 months (1mg). Folate  is 16.7 >=5.9.

She sent my other cancer Doctor down here a  fax as to what she wants. I 
have and appointment set for Jan. 2  and talk to him about what to do. (I'm 
worried). She made a note  to him that I also have CRI which may be 
Contributory.

So  back in 2010 my counts on these two item were Hemoglobin 13.3 and  
Hematocrit was 39.0. 

So back in 2015 my counts on these  two items were Hemoglobin 12.0 and 
Hematocrit was 36.1. So the  counts are coming down and I think it's from 
the  
Gleevec.

My white count is find at 5.8). Iron was 88  (50-212), Iron binding 
capacity was 281 (250 - 450).

So  anyone that may have some answers that may make me feel better just  
hop 
right it and I will very happy to hear from  you.

ALSO, I don't know now to do it but AOL is no longer  going to be as of Jan 
15. My new email address is (myvet...@comcast.net) and it's  free for me 
and much better.

Any feedback would be deeply  appreciated. 

Thank you all and have a Very Happy and Safe  Holiday.

Greenie for South Fort Myers, FL.
Marty Gartenberg : Dec 21  11:31AM -0500 

Hi Greenie,

First of all,  you mention that you are worried. Why may i ask are you  so
worried? When people worry about things that they have little  or no control
over then it not only effects your mind but also  your body. I know all
about this because that is exactly what i  used to do and i learned to
direct my mind in more productive  ways. Now just try to relax and get
yourself going in the right  direction.

Now you mention about CRI so read  this..

*CRI* (color rendering index) is a measure of  how accurately a light source
illuminates objects' true colors.  Our LED lights have *CRI* values of up to
98, indicating that our  LED lights are able to produce white light that
approximates  halogen or incandescent lighting and natural  daylight.

It however has some effect on your kidneys  because if they are having
problems than it is a very simple  thing to just go to a Nephrologist and
see what is happening and  why.

As you mentioned the normal Hemoglobin count for  women should be from
around 13 to 17 however not necessarily for  men because men don't have
their time of the month as woman do,  so men require a bit less of
Hemoglobin.

Now a count  of 10.7 shows that you are enemic and that can from a verity  
of
different things. One being the effects from your TKI being  Gleevic which i
think may be the cause, now mind you I am not a  doctor but someone that
does a lot of research into things that i  have already been through.

Another thing would be  kidney problems which i kind of doubt because your
doctors  haven't mentioned it. Do you know what your

*Levels* of  *creatinine* in the blood reflect both the amount of muscle  a
person has and their amount of kidney function. Most men with  normal kidney
function have approximately 0.6 to 1.2  milligrams/deciliters (mg/dL) of
*creatinine*. Most women with  normal kidney function have between 0.5 to
1.1 mg/dL of  *creatinine*..

My Creatinine level was 8.2 before i  started on my dialysis and i had to go
onto dialysis which lasted  for four years. Then i was able to get a kidney
transplant from a  20 year old deceased man who was anonymous, and about
two weeks  later it dropped down to 4.1 and kept dropping to where it is  
now
at .8 and it now stays there. Remember, i have only one  kidney while most
other people have two kidneys so i know 

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 4 updates in 1 topic

['Dr. Francis Farrell' via CMLHope]

What is your bcr/abl?

Sent from my iPad

> On Dec 22, 2017, at 5:11 AM, cmlhope@googlegroups.com wrote:
> 
> 
> cmlhope@googlegroups.com  Google Groups  
> Topic digest 
> View all topics
> Questions, - 4 Updates
> Questions,
> myvet...@aol.com: Dec 21 07:10AM -0500 
> 
> To all of my CML friends and care givers.
> 
> I took a flight to Chicago Dec. 6th to see my cancer Doctor get blood 
> work. A week later she called me to tell me that my Hemoglobin was down to 
> 10.7 and the norm is 13.0 - 17.5. My Hematocrit was 32.1% and the norm is 
> 38.0 - 50 %.
> She wants me to get a Bone Marrow test here in Florida because the airfare 
> to Chicago would be $601.00. That's not going to happen. I'm also taking 
> Folic acid for the last 6 months (1mg). Folate is 16.7 >=5.9.
> 
> She sent my other cancer Doctor down here a fax as to what she wants. I 
> have and appointment set for Jan. 2 and talk to him about what to do. (I'm 
> worried). She made a note to him that I also have CRI which may be 
> Contributory.
> 
> So back in 2010 my counts on these two item were Hemoglobin 13.3 and 
> Hematocrit was 39.0. 
> 
> So back in 2015 my counts on these two items were Hemoglobin 12.0 and 
> Hematocrit was 36.1. So the counts are coming down and I think it's from the 
> Gleevec.
> 
> My white count is find at 5.8). Iron was 88 (50-212), Iron binding 
> capacity was 281 (250 - 450).
> 
> So anyone that may have some answers that may make me feel better just hop 
> right it and I will very happy to hear from you.
> 
> ALSO, I don't know now to do it but AOL is no longer going to be as of Jan 
> 15. My new email address is (myvet...@comcast.net) and it's free for me 
> and much better.
> 
> Any feedback would be deeply appreciated. 
> 
> Thank you all and have a Very Happy and Safe Holiday.
> 
> Greenie for South Fort Myers, FL.
> Marty Gartenberg : Dec 21 11:31AM -0500 
> 
> Hi Greenie,
>  
> First of all, you mention that you are worried. Why may i ask are you so
> worried? When people worry about things that they have little or no control
> over then it not only effects your mind but also your body. I know all
> about this because that is exactly what i used to do and i learned to
> direct my mind in more productive ways. Now just try to relax and get
> yourself going in the right direction.
>  
> Now you mention about CRI so read this..
>  
> *CRI* (color rendering index) is a measure of how accurately a light source
> illuminates objects' true colors. Our LED lights have *CRI* values of up to
> 98, indicating that our LED lights are able to produce white light that
> approximates halogen or incandescent lighting and natural daylight.
>  
> It however has some effect on your kidneys because if they are having
> problems than it is a very simple thing to just go to a Nephrologist and
> see what is happening and why.
>  
> As you mentioned the normal Hemoglobin count for women should be from
> around 13 to 17 however not necessarily for men because men don't have
> their time of the month as woman do, so men require a bit less of
> Hemoglobin.
>  
> Now a count of 10.7 shows that you are enemic and that can from a verity of
> different things. One being the effects from your TKI being Gleevic which i
> think may be the cause, now mind you I am not a doctor but someone that
> does a lot of research into things that i have already been through.
>  
> Another thing would be kidney problems which i kind of doubt because your
> doctors haven't mentioned it. Do you know what your
>  
> *Levels* of *creatinine* in the blood reflect both the amount of muscle a
> person has and their amount of kidney function. Most men with normal kidney
> function have approximately 0.6 to 1.2 milligrams/deciliters (mg/dL) of
> *creatinine*. Most women with normal kidney function have between 0.5 to
> 1.1 mg/dL of *creatinine*..
>  
> My Creatinine level was 8.2 before i started on my dialysis and i had to go
> onto dialysis which lasted for four years. Then i was able to get a kidney
> transplant from a 20 year old deceased man who was anonymous, and about
> two weeks later it dropped down to 4.1 and kept dropping to where it is now
> at .8 and it now stays there. Remember, i have only one kidney while most
> other people have two kidneys so i know that having only one kidney is
> doing very well for me, and no more dialysis for me anymore.
>  
> What you did mention is that your counts are now at "My white count is find
> at 5.8). Iron was 88 (50-212), Iron binding capacity was 281 (250 -
> 450)". Which
> are quite acceptable and very good for you.
>  
> And speaking about your kidneys let me give you some information. When my
> kidneys started to fail i noticed that my Hemoglobin also was dropping
> especially after i began to receive dialysis. They were at 14 then would
> gradually drop to being 9.9 and that was the magic bullet that triggered
> that i would be able to start receiving Procrit or Epogin 

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 4 updates in 1 topic

['Icandoallttc' via CMLHope]

Hi Penny 
I chose Medicare part A and B. Later I chose prescription 
Part D.  I have Humana prescription coverage. 
I really like Humans. Good luck. 

My Motto: Faith and Pills
Jeanie 18,s 
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 Nov 4, 2015, at 9:53 PM, Myvety2k via CMLHope  
> wrote:
> 
> Penny, check out Humana before you do anything.
>  
> Greenie
> Fort Myers, FL.
>  
> In a message dated 11/4/2015 8:31:56 P.M. Eastern Standard Time, 
> cmlhope@googlegroups.com writes:
> Hello all...I started on Gleevec it worked for 12 years then it stopped 
> so am on Sprycel
> now.  I buy insurance through my employer Wal Mart and get co-pay assistance 
> occasionaly.
> 
> I am looking forward to turning 65 and getting medicare in two years.if 
> you have any advice on supplamental ins.  please pass it along.  I am barely 
> making it through the work day now...Wal Mart now requires you to work an 
> average of 30 hours a  week to be ab le to purchase ins. from them.  Yes, 
> things are changing everywhere.
> 
> Penny 
> boogie_woo...@yahoo.com
>   
>  
> BOOGIE WOOGIE
> 
> 
> 
> On Monday, November 2, 2015 2:10 AM, "cmlhope@googlegroups.com" 
>  wrote:
> 
> 
> cmlhope@googlegroups.com  Google Groups   
> Topic digest 
> View all topics
> New Insurance - 4 Updates
> New Insurance 
> perk : Nov 01 12:04PM -0800 
> 
> My wife and I have insurance through the Healthcare Marketplace (Obama 
> care) where they pay most of the premium amount. Without any notification, 
> they stopped paying and the insurance company dropped us, even though I 
> paid our amount. My wife found out by trying to have a prescription 
> refilled and told at the pharmacy that we had no insurance. I take 70 MG of 
> Sprycel and the cost for a 30 day supply is $7000.00 without insurance. I 
> got everything worked out with the Healthcare Marketplace and my insurance 
> carrier so we're good for now.
>  
> I am suppose to go on Medicare soon and pay for a Part D plan to pay for 
> prescription medicine but the insurance only pays 75% of the cost. I don't 
> think I can pay 25% of $7000.00 every month. Any advice on this matter will 
> be greatly appreciated.
>  
> I wish I could stay on the Obama care plan I have now, as it has been 
> affordable for my wife and I. Marco Rubio was on TV this morning saying if 
> he were elected president, he would repeal Obama care. Many GOP 
> presidential hopefuls have said the same thing. I know the plan is not 
> perfect but it has worked well for my wife and I for the last 2 years and 
> made it affordable to purchase a Tier 5 drug.
>  
> James in Texas 
>  
> On Friday, October 30, 2015 at 6:16:02 PM UTC-5, Suzieq wrote:
>  
> Icandoallttc : Nov 01 03:20PM -0500 
> 
> Hi James and I had the same problem a few years ago. There are organizations 
> that will help you pay the co pay. The leukemia society is one and others. 
> Good luck 
>  
> My Motto: Faith and Pills
> Jeanie 18,s 
> 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
>  
> Icandoallttc : Nov 01 03:21PM -0500 
> 
> I am on Medicare D and it's a great plan. 
>  
> My Motto: Faith and Pills
> Jeanie 18,s 
> 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
>  
> Marty Gartenberg : Nov 01 09:03PM -0500 
> 
> Hi James
>  
> Don't bet your boots on anything to do with the Healthcare Marketplace
> (Obama care) or Medicare. Now I am not being political but first you have
> it and then it is gone and by the way I bet no one ever told you about it
> being gone until.
>  
> I am on Medicare ever since I was afflicted with leukemia at the age of
> only 45. I then had to wait another two years to be accepted onto Medicare.
> We were really down to nothing left in our savings and many other things
> that put us in dire straights. From being an Electrical Engineer to
> nothing. We did everything in order to survive and through thick and thin.
>  
> Years passed and we were able to continue with Medicare along with a
> supplemental policy. Fine, everything was working fine then without any
> notice and the powers to be decided to not pay anything for an in home picc
> line especially if it had to be tendered by a home care nurse. Now this was
> my second picc line. The first had to have an in line pump on it and of
> course also tendered by a home care nurse. The first was paid by Medicare
> and the 20% was paid by my supplemental policy.
>  
> However for the second one since Medicare didn't pay anything then the
> supplemental policy 

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 4 updates in 1 topic

['Icandoallttc' via CMLHope]

I was in Gleevec for 5 years when it quit working.  Never put me in remission. 
Then was on tasigna for a few months.  Quit on me also. Went on Sprycel and was 
in remission quickly. 
Went out if remission on Sprycel and started ponatinib in Jan if this year.  
Good luck. 


My Motto: Faith and Pills
Jeanie 18,s 
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 Nov 4, 2015, at 8:31 PM, 'BOOGIE_WOOGIE' via CMLHope 
>  wrote:
> 
> Hello all...I started on Gleevec it worked for 12 years then it stopped 
> so am on Sprycel
> now.  I buy insurance through my employer Wal Mart and get co-pay assistance 
> occasionaly.
> 
> I am looking forward to turning 65 and getting medicare in two years.if 
> you have any advice on supplamental ins.  please pass it along.  I am barely 
> making it through the work day now...Wal Mart now requires you to work an 
> average of 30 hours a  week to be ab le to purchase ins. from them.  Yes, 
> things are changing everywhere.
> 
> Penny 
> boogie_woo...@yahoo.com
>   
>  
> BOOGIE WOOGIE
> 
> 
> 
> On Monday, November 2, 2015 2:10 AM, "cmlhope@googlegroups.com" 
>  wrote:
> 
> 
> cmlhope@googlegroups.com  Google Groups   
> Topic digest 
> View all topics
> New Insurance - 4 Updates
> New Insurance   
> perk : Nov 01 12:04PM -0800 
> 
> My wife and I have insurance through the Healthcare Marketplace (Obama 
> care) where they pay most of the premium amount. Without any notification, 
> they stopped paying and the insurance company dropped us, even though I 
> paid our amount. My wife found out by trying to have a prescription 
> refilled and told at the pharmacy that we had no insurance. I take 70 MG of 
> Sprycel and the cost for a 30 day supply is $7000.00 without insurance. I 
> got everything worked out with the Healthcare Marketplace and my insurance 
> carrier so we're good for now.
>  
> I am suppose to go on Medicare soon and pay for a Part D plan to pay for 
> prescription medicine but the insurance only pays 75% of the cost. I don't 
> think I can pay 25% of $7000.00 every month. Any advice on this matter will 
> be greatly appreciated.
>  
> I wish I could stay on the Obama care plan I have now, as it has been 
> affordable for my wife and I. Marco Rubio was on TV this morning saying if 
> he were elected president, he would repeal Obama care. Many GOP 
> presidential hopefuls have said the same thing. I know the plan is not 
> perfect but it has worked well for my wife and I for the last 2 years and 
> made it affordable to purchase a Tier 5 drug.
>  
> James in Texas 
>  
> On Friday, October 30, 2015 at 6:16:02 PM UTC-5, Suzieq wrote:
>  
> Icandoallttc : Nov 01 03:20PM -0500 
> 
> Hi James and I had the same problem a few years ago. There are organizations 
> that will help you pay the co pay. The leukemia society is one and others. 
> Good luck 
>  
> My Motto: Faith and Pills
> Jeanie 18,s 
> 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
>  
> Icandoallttc : Nov 01 03:21PM -0500 
> 
> I am on Medicare D and it's a great plan. 
>  
> My Motto: Faith and Pills
> Jeanie 18,s 
> 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
>  
> Marty Gartenberg : Nov 01 09:03PM -0500 
> 
> Hi James
>  
> Don't bet your boots on anything to do with the Healthcare Marketplace
> (Obama care) or Medicare. Now I am not being political but first you have
> it and then it is gone and by the way I bet no one ever told you about it
> being gone until.
>  
> I am on Medicare ever since I was afflicted with leukemia at the age of
> only 45. I then had to wait another two years to be accepted onto Medicare.
> We were really down to nothing left in our savings and many other things
> that put us in dire straights. From being an Electrical Engineer to
> nothing. We did everything in order to survive and through thick and thin.
>  
> Years passed and we were able to continue with Medicare along with a
> supplemental policy. Fine, everything was working fine then without any
> notice and the powers to be decided to not pay anything for an in home picc
> line especially if it had to be tendered by a home care nurse. Now this was
> my second picc line. The first had to have an in line pump on it and of
> course also tendered by a home care nurse. The first was paid by Medicare
> and the 20% was paid by my supplemental policy.
>  
> However for the second one since Medicare didn't pay anything then the
> supplemental policy didn't pay anything either. Yes things 

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 4 updates in 1 topic

[Myvety2k via CMLHope]

Penny, check out Humana before you do anything.
 
Greenie
Fort Myers, FL.
 
 
In a message dated 11/4/2015 8:31:56 P.M. Eastern Standard Time,  
cmlhope@googlegroups.com writes:

 
Hello all...I started on Gleevec it  worked for 12 years then it 
stopped so am on Sprycel
now.  I buy insurance through my  employer Wal Mart and get co-pay 
assistance occasionaly.


I am looking forward to turning 65 and  getting medicare in two 
years.if you have any advice on supplamental ins.  please pass it along.  I 
am 
barely making it through the work day  now...Wal Mart now requires you to work 
an average of 30 hours a  week to  be ab le to purchase ins. from them.  Yes, 
things are changing  everywhere.


Penny 
boogie_woo...@yahoo.com
  

 
 
BOOGIE  WOOGIE






 
 
On Monday, November 2, 2015 2:10 AM,  "cmlhope@googlegroups.com" 
  wrote:





 
 
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(https://groups.google.com/forum/?utm_source=digest_medium=email#!forum/cmlhope/topics)
  
 
*   _New Insurance_ 
(https://us-mg4.mail.yahoo.com/neo/launch?.rand=cuoqarb35r9tp#group_thread_0)  
- 4  Updates 

 () _New Insurance _ 
(http://groups.google.com/group/cmlhope/t/d3345a8bdd809545?utm_source=digest_medium=email)
 
perk  : Nov 01 12:04PM -0800 

My  wife and I have insurance through the Healthcare Marketplace (Obama  
care) where they pay most of the premium amount. Without any  notification, 
they stopped paying and the insurance company  dropped us, even though I 
paid our amount. My wife found out by  trying to have a prescription 
refilled and told at the pharmacy  that we had no insurance. I take 70 MG 
of 
Sprycel and the cost for  a 30 day supply is $7000.00 without insurance. I 
got everything  worked out with the Healthcare Marketplace and my insurance 
 
carrier so we're good for now.

I am suppose to go on  Medicare soon and pay for a Part D plan to pay for 
prescription  medicine but the insurance only pays 75% of the cost. I don't 
 
think I can pay 25% of $7000.00 every month. Any advice on this  matter 
will 
be greatly appreciated.

I wish I could  stay on the Obama care plan I have now, as it has been 
affordable  for my wife and I. Marco Rubio was on TV this morning saying if 
he  were elected president, he would repeal Obama care. Many GOP  
presidential hopefuls have said the same thing. I know the plan is  not 
perfect but it has worked well for my wife and I for the last  2 years and 
made it affordable to purchase a Tier 5  drug.

James in Texas 

On Friday, October 30,  2015 at 6:16:02 PM UTC-5, Suzieq wrote:

Icandoallttc  : Nov 01 03:20PM -0500 

Hi  James and I had the same problem a few years ago. There are  
organizations that will help you pay the co pay. The leukemia society  is one 
and 
others. 
Good luck 

My Motto: Faith and  Pills
Jeanie 18,s 
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

Icandoallttc  : Nov 01 03:21PM -0500 

I am  on Medicare D and it's a great plan. 

My Motto: Faith and  Pills
Jeanie 18,s 
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

Marty Gartenberg  : Nov 01 09:03PM -0500 

Hi  James

Don't bet your boots on anything to do with the  Healthcare Marketplace
(Obama care) or Medicare. Now I am not being  political but first you have
it and then it is gone and by the way  I bet no one ever told you about it
being gone  until.

I am on Medicare ever since I was afflicted  with leukemia at the age of
only 45. I then had to wait another two  years to be accepted onto Medicare.
We were really down to nothing  left in our savings and many other things
that put us in dire  straights. From being an Electrical Engineer to
nothing. We did  everything in order to survive and through thick and  thin.

Years passed and we were able to continue with  Medicare along with a
supplemental policy. Fine, everything was  working fine then without any
notice and the powers to be decided  to not pay anything for an in home picc
line especially if it had  to be tendered by a home care nurse. Now this was
my second picc  line. The first had to have an in line pump on it and of
course  also tendered by a home care nurse. The first was paid by  Medicare
and the 20% was paid by my supplemental  policy.

However for the second one since Medicare didn't  pay anything then the
supplemental policy didn't pay anything  either. Yes things have 

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 4 updates in 1 topic

[Marty Gartenberg]

Hi Penny,

Thank goodness that there other drugs (TKI's) that will work and if one
just stops working at least you can fall forward to one of the others.

Oh yes things are really taking place for the worst and there you are just
trying to make a living just to be able to get by and if you work one
minute less those 30 hours your then getting kicked in you know where. But
no matter what you may be going through your still alive, and you will get
by.

You can believe me because of that per-viable saying, "been there done that"

If you read any of my posts then you know what i am talking about and I do
not complain because it is counterproductive to me.

Also if read any of my posts you will always notice the numbers 18 whice is
the symbol for life.

18's

Marty

So here is something from me to you...

*EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF
CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN
YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET
(MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.*

*WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF
MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING
INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU
THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY.*

*EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE
BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE
SUCCESSFUL OUTCOME...*

*FOCUS...*



On Wed, Nov 4, 2015 at 8:31 PM, 'BOOGIE_WOOGIE' via CMLHope <
cmlhope@googlegroups.com> wrote:

> Hello all...I started on Gleevec it worked for 12 years then it
> stopped so am on Sprycel
> now.  I buy insurance through my employer Wal Mart and get co-pay
> assistance occasionaly.
>
> I am looking forward to turning 65 and getting medicare in two
> years.if you have any advice on supplamental ins.  please pass it
> along.  I am barely making it through the work day now...Wal Mart now
> requires you to work an average of 30 hours a  week to be ab le to purchase
> ins. from them.  Yes, things are changing everywhere.
>
> Penny
> boogie_woo...@yahoo.com
>
>
> BOOGIE WOOGIE
>
>
>
> On Monday, November 2, 2015 2:10 AM, "cmlhope@googlegroups.com" <
> cmlhope@googlegroups.com> wrote:
>
>
>
> cmlhope@googlegroups.com
> 
>  Google
> Groups
> 
> 
> Topic digest
> View all topics
> 
>
>- New Insurance
>
> 
>- 4 Updates
>
> New Insurance
> 
> perk : Nov 01 12:04PM -0800
>
> My wife and I have insurance through the Healthcare Marketplace (Obama
> care) where they pay most of the premium amount. Without any notification,
> they stopped paying and the insurance company dropped us, even though I
> paid our amount. My wife found out by trying to have a prescription
> refilled and told at the pharmacy that we had no insurance. I take 70 MG
> of
> Sprycel and the cost for a 30 day supply is $7000.00 without insurance. I
> got everything worked out with the Healthcare Marketplace and my insurance
> carrier so we're good for now.
>
> I am suppose to go on Medicare soon and pay for a Part D plan to pay for
> prescription medicine but the insurance only pays 75% of the cost. I don't
> think I can pay 25% of $7000.00 every month. Any advice on this matter
> will
> be greatly appreciated.
>
> I wish I could stay on the Obama care plan I have now, as it has been
> affordable for my wife and I. Marco Rubio was on TV this morning saying if
> he were elected president, he would repeal Obama care. Many GOP
> presidential hopefuls have said the same thing. I know the plan is not
> perfect but it has worked well for my wife and I for the last 2 years and
> made it affordable to purchase a Tier 5 drug.
>
> James in Texas
>
> On Friday, October 30, 2015 at 6:16:02 PM UTC-5, Suzieq wrote:
>
> Icandoallttc : Nov 01 03:20PM -0500
>
> Hi James and I had the same problem a few years ago. There are
> organizations that will help you pay the co pay. The leukemia society is
> one and others.
> Good luck
>
> My Motto: Faith and Pills
> Jeanie 18,s
> 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
>
> Icandoallttc : Nov 01 03:21PM -0500
>
> I am on Medicare D and it's a great plan.
>
> My Motto: Faith and Pills
> 

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 4 updates in 1 topic

[NICK WOODS]

Thankful to hear you had good medical treatment which could relieve such pain!  
Hope you're getting stronger and feeling much better now, Marty.  Elizabeth  
Nick 


 On Monday, May 11, 2015 5:16 AM, cmlhope@googlegroups.com 
cmlhope@googlegroups.com wrote:
   

   
|cmlhope@googlegroups.com   |  Google Groups  ||

Topic digest 
  View all topics 
   -   Questions - 4 Updates 
Questions   
|   Icandoallttc icandoall...@aol.com: May 10 04:05PM -0400  

 So sorry you had to go through that painful time. Glad it got better. You are 
lucky the hospital took you right in. One my hubby was so sick and we went to 
the emergency room-- they made him wait for hours to get treated. Glad you are 
better. 
 
Prayers  Blessings Jeanie 18,s
Dx 1/2004
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
 
  |
|   Icandoallttc icandoall...@aol.com: May 10 04:09PM -0400  

 Happy Mother's Day everyone. Daughter grandson and granddaughter took me out 
for lunch. Pasta my favorite. 
 
Prayers  Blessings Jeanie 18,s
Dx 1/2004
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
 
  |
|   Marcie Goodman margoo...@aol.com: May 10 04:15PM -0400  

 Marty, sorry you've been through such a painful time but so glad you are doing 
better. Thoughts and prayers are with you. 
 
18s
 
Marcie
 
Sent from my iPhone
 
  |
|   Marty Gartenberg wa2...@gmail.com: May 10 05:36PM -0400  

 So sorry you had to go through that painful time. Glad it got better.
You are lucky the hospital took you right in. One my hubby was so sick and
we went to the emergency room-- they made him wait for hours to get
treated. Glad you are better.
 
Hi, this is a brand new hospital that is only about 5 miles from me. They
are usually not to busy especially around 10:00. Besides they saw just how
much I was suffering so within five minutes I was taken in for treatment, I
let them know that I needed a Foley Catheter and they had it in the
treatment room.
 
Yes I am very lucky. As soon as they put it in I had instant relief and
both bright red blood mixed with urine started coming out like a waterfall.
I already had this about eight years ago so I was ready for it. I hope that
I never get this again
 
18's,
 
Marty
 
On Sun, May 10, 2015 at 4:05 PM, 'Icandoallttc' via CMLHope 
  |

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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 4 updates in 1 topic

[Maria Cashion]

Hello Ihope that youa are all doing fine I have been out of touch
for a while...been helping someone who needed help. a dear driend and
neighbor.  This Tuesday I will have an appointment at Cengtro Medico...will
see if there is anything new.  I believe that I should be taken off
Sprycel...It is really taking its toll on me with extreme weight gain,
water retention and thyroid problems.  What is sad about it is that my CML
is under complete remission...I am hoping that my oncologists will listen
to me... I will keep you all posted Love (lost of it) and prayers for
all

Maria


On Sun, Aug 24, 2014 at 6:26 AM, cmlhope@googlegroups.com wrote:

 cmlhope@googlegroups.com
 https://groups.google.com/forum/?utm_source=digestutm_medium=email/#!forum/cmlhope/topics
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 Groups
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-  Greenie and Susan #148078d5c002435d_group_thread_0 - 4 Updates

   Greenie and Susan
 http://groups.google.com/group/cmlhope/t/358154c7de47d903?utm_source=digestutm_medium=email
   Marty Gartenberg wa2...@gmail.com: Aug 23 08:41AM -0400

 Hi Susan,

 Praying for you. I know that GOD listens to my prayers. Things will
 get better for you, don't you worry about that.

 When I say 18's you know it means life and that is what your going to
 have. A good life!

 So, I double my 18's for you to 36. Two times Chai.

 Marty

 On Fri, Aug 22, 2014 at 10:37 PM, 'Susan Zimmerman' via CMLHope
   Nadia Noles nadia...@earthlink.net: Aug 23 07:20PM -0400

 Thank you Marty, I do good, if after 7 yahre on Gleevec. I love to read
 from cmlhope, but don't post. Today you deserve a big Merci. Nadia

 -Original Message-
 From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On
 Behalf Of Marty Gartenberg
 Sent: Friday, August 22, 2014 7:27 PM
 To: CMLHope@googlegroups.com
 Subject: [CMLHope]

 What happened to everyone? I hope that everyone is doing well..

 18's,

 Marty

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   Marty Gartenberg wa2...@gmail.com: Aug 23 10:26PM -0400

 Thank you Nadia,

 It was nice hearing from you. Why don't you post more often? You are
 always welcome here.

 Please stay in touch.

 18's,

 Marty

   Susan Zimmerman rszim0...@aol.com: Aug 24 12:10AM -0400

 Marty,
 You are precious and I feel your prayers! I think He's about to give me
 another rest from medicine, (already!) because of the elevated liver
 enzymes. I have decided that is a good thing! I'm sure my numbers are even
 lower than 1.70 (last month), so it's all good. I'm looking forward to
 getting more energy back.


 How are things going for you nowadays? No posting about your own issues,
 come on and share. I know you need a transplant and I and many others are
 praying hard for that to happen soon!


 So sweet to give me a 36, I give you a 54

 Susan F. Zimmerman




 -Original Message-
 From: Marty Gartenberg wa2...@gmail.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Sat, Aug 23, 2014 8:41 am
 Subject: Re: [CMLHope] Greenie and Susan


 Hi Susan,

 Praying for you. I know that GOD listens to my prayers. Things will
 get better for you, don't you worry about that.

 When I say 18's you know it means life and that is what your going to
 have. A good life!

 So, I double my 18's for you to 36. Two times Chai.

 Marty

 On Fri, Aug 22, 2014 at 10:37 PM, 'Susan Zimmerman' via CMLHope
  To unsubscribe from this group and stop receiving emails from it, send an
  email to cmlhope+unsubscr...@googlegroups.com.
  For more options, visit https://groups.google.com/d/optout.

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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 4 updates in 1 topic

[NICK WOODS]

We've had some hopeful news.  Nick's hemoglobin is moving up a little.
His Oncologists decided to lower the amount of Gleevec per week.  Nick's 
feeling so much better, too.  Sure hope the hemoglobin will continue to move 
back to a normal level.  We are thankful to have a very thoughtful Oncologist 
who keeps up with all the latest medical information on CML. 

Thank you all for sharing your updates and information on how different CML 
treatments affect you.  Nick sweats a lot.  He has to keep hydrated especially 
with this high heat.  Do any of you sweat profusely? This began when he was 1st 
diagnosed.  Do your clothes stain where you've sweat?  Just wondered.

Every day is a blessing take care to savor each one.  Elizabeth, Nick's wife
Celebrating 11 years CML and 54 years of marriage this week.


On Sunday, August 24, 2014 5:26 AM, cmlhope@googlegroups.com 
cmlhope@googlegroups.com wrote:
 


cmlhope@googlegroups.com   Google Groups
Topic digest 
View all topics  
* Greenie and Susan - 4 Updates  
Greenie and Susan  
Marty Gartenberg wa2...@gmail.com: Aug 23 08:41AM -0400  

Hi Susan,
 
Praying for you. I know that GOD listens to my prayers. Things will
get better for you, don't you worry about that.
 
When I say 18's you know it means life and that is what your going to
have. A good life!
 
So, I double my 18's for you to 36. Two times Chai.
 
Marty
 
On Fri, Aug 22, 2014 at 10:37 PM, 'Susan Zimmerman' via CMLHope
 
Nadia Noles nadia...@earthlink.net: Aug 23 07:20PM -0400  

Thank you Marty, I do good, if after 7 yahre on Gleevec. I love to read from 
cmlhope, but don't post. Today you deserve a big Merci. Nadia
 
-Original Message-
From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of 
Marty Gartenberg
Sent: Friday, August 22, 2014 7:27 PM
To: CMLHope@googlegroups.com
Subject: [CMLHope] 
 
What happened to everyone? I hope that everyone is doing well..
 
18's,
 
Marty
 
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Marty Gartenberg wa2...@gmail.com: Aug 23 10:26PM -0400  

Thank you Nadia,
 
It was nice hearing from you. Why don't you post more often? You are
always welcome here.
 
Please stay in touch.
 
18's,
 
Marty
 
 
Susan Zimmerman rszim0...@aol.com: Aug 24 12:10AM -0400  

Marty,
You are precious and I feel your prayers!   I think He's about to give me 
another rest from medicine, (already!) because of the elevated liver enzymes.  
I have decided that is a good thing!  I'm sure my numbers are even lower than 
1.70 (last month), so it's all good.  I'm looking forward to getting more 
energy back.
 
 
How are things going for you nowadays?  No posting about your own issues, come 
on and share.  I know you need a transplant and I and many others are praying 
hard for that to happen soon!
 
 
So sweet to give me a 36, I give you a 54 
 
Susan F. Zimmerman
 
 
 
 
-Original Message-
From: Marty Gartenberg wa2...@gmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Sat, Aug 23, 2014 8:41 am
Subject: Re: [CMLHope] Greenie and Susan
 
 
Hi Susan,
 
Praying for you. I know that GOD listens to my prayers. Things will
get better for you, don't you worry about that.
 
When I say 18's you know it means life and that is what your going to
have. A good life!
 
So, I double my 18's for you to 36. Two times Chai.
 
Marty
 
On Fri, Aug 22, 2014 at 10:37 PM, 'Susan Zimmerman' via CMLHope
 To unsubscribe from this group and stop receiving emails from it, send an
 email to cmlhope+unsubscr...@googlegroups.com.
 For more options, visit https://groups.google.com/d/optout.
 
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Back to top 
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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 4 updates in 1 topic

['Marcie Goodman' via CMLHope]

Hi Eluzabeth,

Hopeful news is always good to hear. I have been in Gleevec since diagnosis 5 
1/2 years ago and mostly have night sweats. I take Gleevec with dinner and that 
could be why the sweats occur throughout the night. I sleep with a fan next to 
me, even in winter. I wouldn't be concerned about this, as it is a side effect 
and Nick is staying hydrated. 

Best wishes to both of you for positive results as the doctor lowers the 
dosage. 11 years is quite a long time and that gives the rest of us hope that 
we will do well for many years to come.

Marcie

Sent from my iPad

 On Aug 24, 2014, at 6:26 PM, NICK WOODS ksnwo...@prodigy.net wrote:
 
 We've had some hopeful news.  Nick's hemoglobin is moving up a little.
 His Oncologists decided to lower the amount of Gleevec per week.  Nick's 
 feeling so much better, too.  Sure hope the hemoglobin will continue to move 
 back to a normal level.  We are thankful to have a very thoughtful Oncologist 
 who keeps up with all the latest medical information on CML. 
 
 Thank you all for sharing your updates and information on how different CML 
 treatments affect you.  Nick sweats a lot.  He has to keep hydrated 
 especially with this high heat.  Do any of you sweat profusely? This began 
 when he was 1st diagnosed.  Do your clothes stain where you've sweat?  Just 
 wondered.
 
 Every day is a blessing take care to savor each one.  Elizabeth, Nick's wife
 Celebrating 11 years CML and 54 years of marriage this week.
 
 
 On Sunday, August 24, 2014 5:26 AM, cmlhope@googlegroups.com 
 cmlhope@googlegroups.com wrote:
 
 
 cmlhope@googlegroups.com  Google Groups  
 Topic digest 
 View all topics
 Greenie and Susan - 4 Updates
 Greenie and Susan   
 Marty Gartenberg wa2...@gmail.com: Aug 23 08:41AM -0400 
 
 Hi Susan,
  
 Praying for you. I know that GOD listens to my prayers. Things will
 get better for you, don't you worry about that.
  
 When I say 18's you know it means life and that is what your going to
 have. A good life!
  
 So, I double my 18's for you to 36. Two times Chai.
  
 Marty
  
 On Fri, Aug 22, 2014 at 10:37 PM, 'Susan Zimmerman' via CMLHope
 Nadia Noles nadia...@earthlink.net: Aug 23 07:20PM -0400 
 
 Thank you Marty, I do good, if after 7 yahre on Gleevec. I love to read from 
 cmlhope, but don't post. Today you deserve a big Merci. Nadia
  
 -Original Message-
 From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of 
 Marty Gartenberg
 Sent: Friday, August 22, 2014 7:27 PM
 To: CMLHope@googlegroups.com
 Subject: [CMLHope] 
  
 What happened to everyone? I hope that everyone is doing well..
  
 18's,
  
 Marty
  
 -- 
 -- 
 [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
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 --- 
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 email to cmlhope+unsubscr...@googlegroups.com.
 For more options, visit https://groups.google.com/d/optout.
 Marty Gartenberg wa2...@gmail.com: Aug 23 10:26PM -0400 
 
 Thank you Nadia,
  
 It was nice hearing from you. Why don't you post more often? You are
 always welcome here.
  
 Please stay in touch.
  
 18's,
  
 Marty
  
 Susan Zimmerman rszim0...@aol.com: Aug 24 12:10AM -0400 
 
 Marty,
 You are precious and I feel your prayers! I think He's about to give me 
 another rest from medicine, (already!) because of the elevated liver enzymes. 
 I have decided that is a good thing! I'm sure my numbers are even lower than 
 1.70 (last month), so it's all good. I'm looking forward to getting more 
 energy back.
  
  
 How are things going for you nowadays? No posting about your own issues, come 
 on and share. I know you need a transplant and I and many others are praying 
 hard for that to happen soon!
  
  
 So sweet to give me a 36, I give you a 54 
  
 Susan F. Zimmerman
  
  
  
  
 -Original Message-
 From: Marty Gartenberg wa2...@gmail.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Sat, Aug 23, 2014 8:41 am
 Subject: Re: [CMLHope] Greenie and Susan
  
  
 Hi Susan,
  
 Praying for you. I know that GOD listens to my prayers. Things will
 get better for you, don't you worry about that.
  
 When I say 18's you know it means life and that is what your going to
 have. A good life!
  
 So, I double my 18's for you to 36. Two times Chai.
  
 Marty
  
 On Fri, Aug 22, 2014 at 10:37 PM, 'Susan Zimmerman' via CMLHope
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