Re: [CMLHope] Hello All!

['Jeanie' via CMLHope]

Check your thyroid.  My hair was falling out and all I wanted to do was sleep. 
Very nervous all the time. 
❤️

My Motto:
Faith and Pills
With Love
Jeanie
🐠free
18’s to Marty
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/ 2015 15 mg
New Doctor--Dr Martine Extermann
Moffitt Cancer  center sept 2017
Dr Balducci retired 
Dr Gedia PCD
0 CBL. ABL
Taking 0.05mg 50 mcg levothyroxine
July 2018 dx with thyroid disease tsh 13
T4-normal t3-normal

> On Oct 3, 2018, at 11:01 PM, bkbarney via CMLHope  
> wrote:
> 
> Dear Richard,
> 
> So sorry to hear about your struggles and hospitalizations. Sounds scary. So 
> glad to hear that you are on the mend and starting to feel better...I shall 
> keep you in my thoughts and prayers along will all of our community out 
> therestruggling together and those who are feeling well, arre beacons of 
> light for the rest of us, reminders that we can get through even the rough 
> times together because we have each other.
> 
> HI Marty!
> 
> 18's to all,
> 
> Beth
> 
> 
> -Original Message-
> From: Tony Lanoue 
> To: cmlhope 
> Sent: Wed, Oct 3, 2018 4:49 am
> Subject: Re: [CMLHope] Hello All!
> 
> Hi Richard, glad to hear you’re on the mend. Try to walk a little bit, need 
> to keep that blood pumping! 
> Tony 
> 
> Sent from my iPhone
> 
> On Sep 29, 2018, at 11:29 PM, Richard H  wrote:
> 
> I am sorry I have not posted in a while.  I have been rather busy  taking  
> care of this older model body I have.  I been in and out of the hospital 
> about 4 times with low blood counts and fluid buildup in my lungs and legs.  
> I am recovering, and have started to increase my energy level.  We (doctors 
> and me) are not sure what the causes are for sure.  Heart, CML,  or I just 
> was  too tired .  Recovery is underway so all is well.  
> I wish the best for those having problems.
> 
> 18's
> 
> Richard H.
> Still going after 17 1/2 years on Gleevec.
> -- 
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Re: [CMLHope] Hello All!

[bkbarney via CMLHope]

Dear Richard,


So sorry to hear about your struggles and hospitalizations. Sounds scary. So 
glad to hear that you are on the mend and starting to feel better...I shall 
keep you in my thoughts and prayers along will all of our community out 
therestruggling together and those who are feeling well, arre beacons of 
light for the rest of us, reminders that we can get through even the rough 
times together because we have each other.


HI Marty!


18's to all,


Beth



-Original Message-
From: Tony Lanoue 
To: cmlhope 
Sent: Wed, Oct 3, 2018 4:49 am
Subject: Re: [CMLHope] Hello All!


Hi Richard, glad to hear you’re on the mend. Try to walk a little bit, need to 
keep that blood pumping! 
Tony 


Sent from my iPhone

On Sep 29, 2018, at 11:29 PM, Richard H  wrote:



I am sorry I have not posted in a while.  I have been rather busy  taking  care 
of this older model body I have.  I been in and out of the hospital about 4 
times with low blood counts and fluid buildup in my lungs and legs.  I am 
recovering, and have started to increase my energy level.  We (doctors and me) 
are not sure what the causes are for sure.  Heart, CML,  or I just was  too 
tired .  Recovery is underway so all is well.  
I wish the best for those having problems.


18's


Richard H.
Still going after 17 1/2 years on Gleevec.

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Re: [CMLHope] Hello All!

[Tony Lanoue]

Hi Richard, glad to hear you’re on the mend. Try to walk a little bit, need to 
keep that blood pumping!
Tony

Sent from my iPhone

On Sep 29, 2018, at 11:29 PM, Richard H 
mailto:rbhuffm...@gmail.com>> wrote:

I am sorry I have not posted in a while.  I have been rather busy  taking  care 
of this older model body I have.  I been in and out of the hospital about 4 
times with low blood counts and fluid buildup in my lungs and legs.  I am 
recovering, and have started to increase my energy level.  We (doctors and me) 
are not sure what the causes are for sure.  Heart, CML,  or I just was  too 
tired .  Recovery is underway so all is well.
I wish the best for those having problems.

18's

Richard H.
Still going after 17 1/2 years on Gleevec.

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[CMLHope] Hello All!

[Richard H]

I am sorry I have not posted in a while.  I have been rather busy  taking  
care of this older model body I have.  I been in and out of the hospital 
about 4 times with low blood counts and fluid buildup in my lungs and 
legs.  I am recovering, and have started to increase my energy level.  We 
(doctors and me) are not sure what the causes are for sure.  Heart, 
CML,  or I just was  too tired .  Recovery is underway so all is well.  
I wish the best for those having problems.

18's

Richard H.
Still going after 17 1/2 years on Gleevec.

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Re: [CMLHope] Hello all

[Marty Gartenberg]

Hey Skip,

I want you to think back to a long time ago about this, "I think someone
once called me an urban legend, which I am not just old and wasting the
takpayers money".  Can you remember this and who said this to you besides
yourself?

It was about the time that we were communicating by way of the Morse Code.
O yea, we are two "old" men but were still alive today, and we don't
complain about any of the things that we went through.

For everyone else: the reason that we used to communicate by way of Morse
Code is the fact that we are both ham radio operators and by the way so are
my wife, our son as well as our daughter.

But that was the way it was for us, and we still continue on by way of
Skype.

One last thing Skip, and I have already mentioned this to you before, you
get that thing going with The world book of Guinness records because you
are going to win and just look at all of the attention people may get from
your experiences. Maybe this will bring along some things about CML and the
things that are happening to day.

18's  Dear friend

Marty   ..

On Thu, Apr 14, 2016 at 12:13 PM, skipd  wrote:

> I did not know about google cmlhope.  I lost yahoo a year or so ago and
> never could get back on.  I am now back on google and thanks to Marty all
> seems right with the world.  I have had CML for a long time and will go off
> and on the internet depends on where my blood and platelets are.  all that
> means is how tired I am.  I do read all the posts when I can.  I want to
> say hi to all the long timers and the newbies to CML.  I think someone once
> called me an urban legend, which I am not just old and wasting the
> takpayers money.  If anyone is interested
> I would give me stats, but I am sure most of you are tired of it..
> health to all.
> Skipd
>
> --
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Re: [CMLHope] Hello all

['Icandoallttc' via CMLHope]

Hi Skip and we love to hear how you are doing and everyone!  
So glad you are back with us. 
We are a group with loving ears and hopes for a great tomorrow.  
So keep posting.  
❤️❤️

My Motto: Faith and Pills❤️
With 💗Jeanie 🐟🐟18,s Chi
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 Apr 14, 2016, at 12:13 PM, skipd  wrote:
> 
> I did not know about google cmlhope.  I lost yahoo a year or so ago and never 
> could get back on.  I am now back on google and thanks to Marty all seems 
> right with the world.  I have had CML for a long time and will go off and on 
> the internet depends on where my blood and platelets are.  all that means is 
> how tired I am.  I do read all the posts when I can.  I want to say hi to all 
> the long timers and the newbies to CML.  I think someone once called me an 
> urban legend, which I am not just old and wasting the takpayers money.  If 
> anyone is interested
> I would give me stats, but I am sure most of you are tired of it..
> health to all.
> Skipd
> -- 
> -- 
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Re: [CMLHope] Hello all

[Marty Gartenberg]

Hey Skip,

You think that everyone may be tired of your stats? Well then why not let
everyone know that your stats go back for almost 40 years with out taking
any TKI's or even having a bone marrow transplant? Yea, you are a miracle
man for sure. I am sure people that don't know you would be very interested
about your almost 40 year story, because you are the longest surviving
human being having CML.

Wondering if you might be able to get in touch with The World Book of
Geneses records.👍

I have survived for 27 years, a mere walk in the park for you.

18s, Skip!

Marty

On Thu, Apr 14, 2016 at 12:13 PM, skipd  wrote:

> I did not know about google cmlhope.  I lost yahoo a year or so ago and
> never could get back on.  I am now back on google and thanks to Marty all
> seems right with the world.  I have had CML for a long time and will go off
> and on the internet depends on where my blood and platelets are.  all that
> means is how tired I am.  I do read all the posts when I can.  I want to
> say hi to all the long timers and the newbies to CML.  I think someone once
> called me an urban legend, which I am not just old and wasting the
> takpayers money.  If anyone is interested
> I would give me stats, but I am sure most of you are tired of it..
> health to all.
> Skipd
>
> --
> --
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[CMLHope] Hello all

[skipd]

I did not know about google cmlhope.  I lost yahoo a year or so ago and 
never could get back on.  I am now back on google and thanks to Marty all 
seems right with the world.  I have had CML for a long time and will go off 
and on the internet depends on where my blood and platelets are.  all that 
means is how tired I am.  I do read all the posts when I can.  I want to 
say hi to all the long timers and the newbies to CML.  I think someone once 
called me an urban legend, which I am not just old and wasting the 
takpayers money.  If anyone is interested
I would give me stats, but I am sure most of you are tired of it..
health to all.
Skipd

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[CMLHope] Hello All - Yahoo Debacle

[Barbara Heathcote]

Hi all.  Just checking in.   I can't believe the mess that Yahoo has
created.   So much history and precious memories were in those archives
. . .  Melinda Kerner,  Paul Barsevski, Warrior Jaymack and too many
other CML comrades who've lost their valiant fights.And just as
important, the information that many of us rely on to look back at.

Rob - is there ANY recourse in having Yahoo re-establish the purged
files? They must have a back up system of sorts.

Anyway, just wanted to say hello.  I am still awaiting my MDACC results
- which should be available within the next two weeks.I'll keep you
all posted!  Stay tuned!

Hugs to all.

Barbara