Re: [CMLHope] Re: About Marty

[sherri swanson]

Thank you so much for the update on Marty. I'm glad to know he is home and
will reconnect when he is able. Let us know if there is an address that we
can send cards and good wishes.

Sherri

On Thu, Sep 8, 2016 at 11:16 AM, Myvety2k via CMLHope <
cmlhope@googlegroups.com> wrote:

> Thank you so much for your comment on Derek, and to the rest of the
> group.  Still hard to believe he's gone.
>
> greenie
>
> In a message dated 9/8/2016 12:11:21 P.M. Eastern Daylight Time,
> cmlhope@googlegroups.com writes:
>
> Ditto  from me. Thank you so much for checking on Marty. Glad to know his
> story..and that his amazing spirit is still intact to inspire all of us.
> HOPe everyoneis doing OK. Greenie , thinking of you and your wife as you
> live through the loss of your son. While there are no words adequate to
> express my sadness for you, I want you to know I and all of us here,
> continue to think of you each day. Take good care.
>
> Love, Beth
>
>
> -Original Message-
> From: Myvety2k via CMLHope 
> To: cmlhope 
> Sent: Thu, Sep 8, 2016 9:38 am
> Subject: Re: [CMLHope] Re: About Marty
>
> Thank you so much for checking out how Marty is doing for all of us.
>
> greenie
>
> In a message dated 9/8/2016 6:35:42 A.M. Eastern Daylight Time,
> cmlhope@googlegroups.com writes:
>
>
>
> > On Sep 7, 2016, at 6:04 PM, LadyRx  wrote:
> >
> > Because everyone has been worried about our suddenly absent friend,
> Marty, I decided to look him up and call. Our dear friend is recovering
> from a fall in which he broke his neck in three places and broke some bones
> in his shoulder. Due to complications from surgery, he developed pneumonia
> and was in the hospital. After recuperating from that and being in a rehab
> facility, he is at home now. He seems to have a very positive attitude.
> What an amazingly kind, warm, intelligent man he is! He sends warmest
> regards to all and looks forward to reconnecting with everyone when he's
> able to do so.
> > 18's for our friend, Marty!
>
> --
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Re: [CMLHope] Haven't gotten any e-mail notifications

[bkbarney via CMLHope]

Dear Jeanie,


I too was stunned that you have been in so much pain for so long and that the 
pancreatitis was not found sooner. Eating fats definitely triggers it and makes 
it worse. The good news is with proper meds, and a diet to calm it down, you 
very well may have that pain go away forever.. That would be wonderful!!  I 
don't know a thing about a pancreatitis that has gone on for so long without 
diagnosis or treatment..but I hope and pray that you feel much better very very 
soon.


Joyce, and ERCP is a test where they put you under twilight meds, like a 
colonoscopy, and take a small tube with a camera on the end of it and go down 
your throat into your tummy etc  to have a lookthey sometimes will take a  
small biopsy to assess the cells in the area...look for inflammation or 
infection, etc...it doesn't hurt.. may have a tiny sore throat for a day 
afterwards...but that's about it...painless. worth a look Jeannie- it also can 
help to rule in or out other possible causes of pain.


Beth



-Original Message-
From: Joyce Mesnarich 
To: cmlhope 
Sent: Wed, Sep 7, 2016 6:09 pm
Subject: Re: [CMLHope] Haven't gotten any e-mail notifications

Jeanie,
Any restricted diet is a challenge; but if you are motivated it is very 
possible.  And I know you will be motivated.  I think this may, in fact, be the 
cause of your pain in the side.  Seems almost unthinkable that it took doctors 
this long to find your pancreas problem.  My husband, Wayne, is still on 
Bosulif since Sept 2015.  Was on Sprycel before that but had problems with 
pleural effusion.  Was on vacation about 3 months.  But in spite of the fact 
that he had been in a deep MMR his PRC counts went up.  Dr Talpaz was hoping 
maybe he would be one of the lucky ones who could quit treatment.  Not so.  He 
has again achieved MMR.  What concerns me is that each test his counts go up a 
bit.  He is a 0.0321.  Dr says not to worry.  He is still in MMR.  So I will 
try to put it out of mind.
We learn so much from each other.  Maybe you can enlighten me as to what a ERCP 
is.
God bless and keep you.
 Joyce in IL


> On Sep 6, 2016, at 1:48 PM, 'Jeanie' via CMLHope  
> wrote:
> 
> Thanks Joyce,
> Yes a low fat diet is recommended for pancreatic problems.  About 7 months 
> into Ponatinib treatment the pain in my side became bad.  One of the side 
> effects is pancreatitis.  They say it is caused by drinking and smoking and I 
> don't do either so it has to be the tki.  
> They say you can heal it with diet so I'll take that step but don't know what 
> the doctor will say. See him the end of the month.  
> He might want a ERCP.  Don't know if I want that. 
> Blessings to all.  
> 
> 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 Sep 6, 2016, at 2:24 PM, Joyce Mesnarich  wrote:
>> 
>> Jeanie,
>> So sorry to hear of your pancreas problem.  I guess we learn something new 
>> every day.  I never knew the pancreas had anything to do with fat.  I 
>> thought it handled sugar.  Whatever, we have to do what the doctors tell us. 
>>  As time goes on, I fear that they will find out that most of the TKIs have 
>> bad side effects when used for a longer amount of time.  But we are all 
>> thankful for the extra length of time they give CML warriors “on the right 
>> side of the grass”, as they say.  I will keep you in my prayers.
>>   Joyce in IL
>> 
>> 
>>> On Sep 6, 2016, at 6:45 AM, 'Jeanie' via CMLHope  
>>> wrote:
>>> 
>>> Me either.  Think everyone is on vacation.  
>>> I had my cat scan. Some bad news.  My pancreas has atrophied.  Got to cut 
>>> down on fat.  I wonder if that is what is causing my pain.  I know 
>>> Ponatinib causes pancreatitis.  Dr never says anything about it.  
>>> Everything else was the same except for a little fatty liver. 
>>> Hope everyone is good.  
>>> Still no Marty 
>>> 
>>> 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 Sep 5, 2016, at 7:06 PM, 'LadyRx' via CMLHope 
  wrote:
 
 I haven't received any notifications in my e-mail for the past 3 weeks or 
 so. Just checking to see if the group is still active. If so, please leave 
 a comment.
 
 Thank you!
 
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Re: [CMLHope] Re: About Marty

[Myvety2k via CMLHope]

Thank you so much for your comment on Derek, and to the rest  of the group. 
 Still hard to believe he's gone.
 
greenie
 
 
In a message dated 9/8/2016 12:11:21 P.M. Eastern Daylight Time,  
cmlhope@googlegroups.com writes:

Ditto  from me. Thank you so much for  checking on Marty. Glad to know his 
story..and that his amazing spirit is  still intact to inspire all of us. 
HOPe everyoneis doing OK. Greenie ,  thinking of you and your wife as you live 
through the loss of your son. While  there are no words adequate to express 
my sadness for you, I want you to know  I and all of us here, continue to 
think of you each day. Take good care.  


Love, Beth


-Original  Message-
From: Myvety2k via CMLHope  
To: cmlhope  
Sent: Thu, Sep 8, 2016 9:38 am
Subject:  Re: [CMLHope] Re: About Marty


 
Thank you so much for checking out how Marty is doing for  all of us.
 
greenie
 
 
In a message dated 9/8/2016 6:35:42 A.M. Eastern Daylight Time, 
_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com)   writes:



> On Sep 7, 2016, at 6:04 PM, LadyRx <_LadyRx@aol.com_ 
(mailto:lad...@aol.com) > wrote:
> 
>  Because everyone has been worried about our suddenly absent friend, 
Marty, I  decided to look him up and call. Our dear friend is recovering from a 
fall  in which he broke his neck in three places and broke some bones in his 
 shoulder. Due to complications from surgery, he developed pneumonia and 
was  in the hospital. After recuperating from that and being in a rehab 
facility,  he is at home now. He seems to have a very positive attitude.  What 
an  
amazingly kind, warm, intelligent man he is! He sends warmest regards to 
all  and looks forward to reconnecting with everyone when he's able to do so.  
> 18's for our friend, Marty!

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Re: [CMLHope] Re: About Marty

[bkbarney via CMLHope]

Ditto  from me. Thank you so much for checking on Marty. Glad to know his 
story..and that his amazing spirit is still intact to inspire all of us. HOPe 
everyoneis doing OK. Greenie , thinking of you and your wife as you live 
through the loss of your son. While there are no words adequate to express my 
sadness for you, I want you to know I and all of us here, continue to think of 
you each day. Take good care.


Love, Beth



-Original Message-
From: Myvety2k via CMLHope 
To: cmlhope 
Sent: Thu, Sep 8, 2016 9:38 am
Subject: Re: [CMLHope] Re: About Marty



Thank you so much for checking out how Marty is doing for all of us.
 
greenie
 

In a message dated 9/8/2016 6:35:42 A.M. Eastern Daylight Time, 
cmlhope@googlegroups.com writes:


> On Sep 7, 2016, at 6:04 PM, LadyRx    wrote:
> 
> Because everyone has been   worried about our suddenly absent friend, Marty, 
> I decided to look him up and   call. Our dear friend is recovering from a 
> fall in which he broke his neck in   three places and broke some bones in his 
> shoulder. Due to complications from   surgery, he developed pneumonia and was 
> in the hospital. After recuperating   from that and being in a rehab 
> facility, he is at home now. He seems to have a   very positive attitude.  
> What an amazingly kind, warm, intelligent man he   is! He sends warmest 
> regards to all and looks forward to reconnecting with   everyone when he's 
> able to do so. 
> 18's for our friend,   Marty!

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Re: [CMLHope] Re: About Marty

[Myvety2k via CMLHope]

Thank you so much for checking out how Marty is doing for all  of us.
 
greenie
 
 
In a message dated 9/8/2016 6:35:42 A.M. Eastern Daylight Time,  
cmlhope@googlegroups.com writes:



> On Sep 7, 2016, at 6:04 PM, LadyRx   wrote:
> 
> Because everyone has been  worried about our suddenly absent friend, 
Marty, I decided to look him up and  call. Our dear friend is recovering from a 
fall in which he broke his neck in  three places and broke some bones in his 
shoulder. Due to complications from  surgery, he developed pneumonia and 
was in the hospital. After recuperating  from that and being in a rehab 
facility, he is at home now. He seems to have a  very positive attitude.  What 
an 
amazingly kind, warm, intelligent man he  is! He sends warmest regards to 
all and looks forward to reconnecting with  everyone when he's able to do so. 
> 18's for our friend,  Marty!

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Re: [CMLHope] Re: About Marty

['Jeanie' via CMLHope]

I knew something had happened.  Thanks so much for the news.  

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 Sep 8, 2016, at 6:58 AM, ANGELYN ESDERS  wrote:
> 
> Thanks for finding out about Marty. I'm really sorry to hear about all that 
> he has had to endure. 
> God bless him for keeping a positive attitude!
> Is there an address where he could receive greeting cards?
> 
> From: 'LadyRx' via CMLHope 
> To: cmlhope@googlegroups.com 
> Sent: Thursday, September 8, 2016 6:35 AM
> Subject: [CMLHope] Re: About Marty
> 
> 
> 
> > On Sep 7, 2016, at 6:04 PM, LadyRx  wrote:
> > 
> > Because everyone has been worried about our suddenly absent friend, Marty, 
> > I decided to look him up and call. Our dear friend is recovering from a 
> > fall in which he broke his neck in three places and broke some bones in his 
> > shoulder. Due to complications from surgery, he developed pneumonia and was 
> > in the hospital. After recuperating from that and being in a rehab 
> > facility, he is at home now. He seems to have a very positive attitude.  
> > What an amazingly kind, warm, intelligent man he is! He sends warmest 
> > regards to all and looks forward to reconnecting with everyone when he's 
> > able to do so. 
> > 18's for our friend, Marty!
> 
> -- 
> -- 
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Re: [CMLHope] Haven't gotten any e-mail notifications

['Jeanie' via CMLHope]

Hi Joyce and so good to hear from you. Glad your hubby is good. I can't quit 
treatment either because my platelets and wbc go sky high. I am in Ponatinib.   
Been in MMR for a while now.  As you know from my experience you never know 
when the leukies show their vicious selves. 
PRCP is much like an endoscopy where they run a tube down your throat and it 
shows your tummy area and etc but the PRCP goes further and looks at your bile 
ducts and pancreas ducts.  At the same time they can take biopsies and clean 
out ducts if needed.  It is a serious procedure and you need a very experience 
surgeon to do it. 
I will only do that as a last resort.  
On a better note the new chemo is working.  
Bad side effects at first. Hair falling out, skin so dry, eyes affected and 
side pain got worse. 
Yes I will miss my fats. I'm always looking for foods with fat instead of low 
fat.  Hehe
I'm taking digestive enzymes also. 
Going to Moffitt in the 29th. Let you know what happens. 
Blessings.  

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 Sep 7, 2016, at 7:09 PM, Joyce Mesnarich  wrote:
> 
> Jeanie,
> Any restricted diet is a challenge; but if you are motivated it is very 
> possible.  And I know you will be motivated.  I think this may, in fact, be 
> the cause of your pain in the side.  Seems almost unthinkable that it took 
> doctors this long to find your pancreas problem.  My husband, Wayne, is still 
> on Bosulif since Sept 2015.  Was on Sprycel before that but had problems with 
> pleural effusion.  Was on vacation about 3 months.  But in spite of the fact 
> that he had been in a deep MMR his PRC counts went up.  Dr Talpaz was hoping 
> maybe he would be one of the lucky ones who could quit treatment.  Not so.  
> He has again achieved MMR.  What concerns me is that each test his counts go 
> up a bit.  He is a 0.0321.  Dr says not to worry.  He is still in MMR.  So I 
> will try to put it out of mind.
> We learn so much from each other.  Maybe you can enlighten me as to what a 
> ERCP is.
> God bless and keep you.
> Joyce in IL
> 
> 
>> On Sep 6, 2016, at 1:48 PM, 'Jeanie' via CMLHope  
>> wrote:
>> 
>> Thanks Joyce,
>> Yes a low fat diet is recommended for pancreatic problems.   About 7 months 
>> into Ponatinib treatment the pain in my side became bad.  One of the side 
>> effects is pancreatitis.  They say it is caused by drinking and smoking and 
>> I don't do either so it has to be the tki.  
>> They say you can heal it with diet so I'll take that step but don't know 
>> what the doctor will say. See him the end of the month.  
>> He might want a ERCP.  Don't know if I want that.  
>> Blessings to all.  
>> 
>> 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 Sep 6, 2016, at 2:24 PM, Joyce Mesnarich  wrote:
>>> 
>>> Jeanie,
>>> So sorry to hear of your pancreas problem.  I guess we learn something new 
>>> every day.  I never knew the pancreas had anything to do with fat.  I 
>>> thought it handled sugar.  Whatever, we have to do what the doctors tell 
>>> us.  As time goes on, I fear that they will find out that most of the TKIs 
>>> have bad side effects when used for a longer amount of time.  But we are 
>>> all thankful for the extra length of time they give CML warriors “on the 
>>> right side of the grass”, as they say.  I will keep you in my prayers.
>>>  Joyce in IL
>>> 
>>> 
 On Sep 6, 2016, at 6:45 AM, 'Jeanie' via CMLHope 
  wrote:
 
 Me either.  Think everyone is on vacation.  
 I had my cat scan. Some bad news.  My pancreas has atrophied.  Got to cut 
 down on fat.  I wonder if that is what is causing my pain.  I know 
 Ponatinib causes pancreatitis.  Dr never says anything about it.  
 Everything else was the same except for a little fatty liver. 
 Hope everyone is good.  
 Still no Marty 
 
 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 Sep 5, 2016, at 7:06 PM, 'LadyRx' via CMLHope 
>  wrote:
> 
> I haven't received any notifications in my e-mail for the past 3 weeks or 
> so. Just checking to see if the group is still active. If so, please 
> leave a comment.
> 
> Thank you!
> 
> -- 
> -- 
> [CMLHope]
> A support group of http://cmlhope.com
> -
> 
> You 

Re: [CMLHope] Re: About Marty

[ANGELYN ESDERS]

Thanks for finding out about Marty. I'm really sorry to hear about all that he 
has had to endure. God bless him for keeping a positive attitude!Is there an 
address where he could receive greeting cards?

  From: 'LadyRx' via CMLHope 
 To: cmlhope@googlegroups.com 
 Sent: Thursday, September 8, 2016 6:35 AM
 Subject: [CMLHope] Re: About Marty
   


> On Sep 7, 2016, at 6:04 PM, LadyRx  wrote:
> 
> Because everyone has been worried about our suddenly absent friend, Marty, I 
> decided to look him up and call. Our dear friend is recovering from a fall in 
> which he broke his neck in three places and broke some bones in his shoulder. 
> Due to complications from surgery, he developed pneumonia and was in the 
> hospital. After recuperating from that and being in a rehab facility, he is 
> at home now. He seems to have a very positive attitude.  What an amazingly 
> kind, warm, intelligent man he is! He sends warmest regards to all and looks 
> forward to reconnecting with everyone when he's able to do so. 
> 18's for our friend, Marty!

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[CMLHope] Re: About Marty

['LadyRx' via CMLHope]

> On Sep 7, 2016, at 6:04 PM, LadyRx  wrote:
> 
> Because everyone has been worried about our suddenly absent friend, Marty, I 
> decided to look him up and call. Our dear friend is recovering from a fall in 
> which he broke his neck in three places and broke some bones in his shoulder. 
> Due to complications from surgery, he developed pneumonia and was in the 
> hospital. After recuperating from that and being in a rehab facility, he is 
> at home now. He seems to have a very positive attitude.  What an amazingly 
> kind, warm, intelligent man he is! He sends warmest regards to all and looks 
> forward to reconnecting with everyone when he's able to do so. 
> 18's for our friend, Marty!

-- 
-- 
[CMLHope]
A support group of http://cmlhope.com
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