Re: [CMLHope] Gleevec

[Richard H]

Thanks for the update.  I hope all keeps going well.

No preaching today, you are under control and I hope you continue to get 
better.

Richard H.

On Tuesday, August 8, 2017 at 12:33:13 PM UTC-5, Beth wrote:
>
> Dear Susan, Jeanie, Marty, Richard, Greenie et all,  
>
> So sorry I have not been communicative for a long while. I am coming up 
> after a really hard year physically and with many losses...sifting through 
> 6000 emails...I realize how much I have missed just our groups banter, and 
> love
>
> Hope each one of you is enjoying moments of sunshine...and holding on to 
> the love that is in our group. I rely so often on the stories of others to 
> inspire me, give me perspective...to hold hope for a better tomorrow and to 
> stand tall in the belief that "This too shall pass" as my dad used to 
> say...when things were really bad..  I had a rough year starting last 
> September with heart issues, then got worse in December...and stayed 
> struggling through the spring...starting to feel a bit strongerstill 
> vulnerable, but fighting spirit is back...and I am here...to see the 
> hummingbirds out my window...flox is in full bloom75 degrees  and sunny 
> today.so life is good for now...later today seeing the cardiologist to 
> swap medicines...then oncologist Friday. CPK stil supper high so muscle 
> continues to waste..I hardly recognize myself and its affected my 
> kidneys..all the protein going through them...Will get blood work done in a 
> couple of weeks at U of C...last test in June had cancer showing...at low 
> levels...had to go off for a drug holiday because of toxicity...so only 
> back on for three weeks. We shall see how I am doingI am seeing Dr. 
> Druker in October...he always makes me feel hopeful and calmhe has a 
> way about him that invites this...and for which I am always so grateful..
>
> I know each of you has had your strugglesphysically and 
> emotionally...I think of you often and pray for each of you every 
> nightGreenie, especially you and your wife,this first year of 
> grieving Derek...your anniversary.so hard to bare...I m holding 7 
> clients who have lost adult children in my practice. I brought them 
> together in a group to so they could meet one another and share their 
> stories, introduce their children and share their grief.
>  
> I thought of you and wondered if something like that might be helpful to 
> you..I know there are many supports in your area through local hospices and 
> I think Health Park...God willing I will be down by you in December as I 
> was supposed to be last year before everything erupted..
> Hope to one day give you a big hug. 
>
> and to the rest of you..love, hugs and 18'sit feels good to write 
> something...
>
>
> Beth
>
>

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[CMLHope] Re: Gleevec

[Richard H]

Welcome back!

On Tuesday, August 8, 2017 at 5:57:29 AM UTC-5, Ken wrote:
>
> Good morning everyone, 
> I just discovered that this site is still active. 
> I have been on Gleevec for 17 years with good results, but have had 
> additional medical challenges. 
> I was a member of the original participants for the STI571(Gleevec) at 
> Johns Hopkins Hospitals in Baltimore after trying everything else on the 
> market for CML with no success. 
> I am now 75 and thanks to God, family, and numerous medical staff I have 
> been around long enough to have become a grandfather. 
> Very best wishes to everyone in their battle with cancer. 
> Ken Roberson 
>
> Sent from my iPad

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Re: [CMLHope] Gleevec

[bkbarney via CMLHope]

Dear Susan, Jeanie, Marty, Richard, Greenie et all, 


So sorry I have not been communicative for a long while. I am coming up after a 
really hard year physically and with many losses...sifting through 6000 
emails...I realize how much I have missed just our groups banter, and love


Hope each one of you is enjoying moments of sunshine...and holding on to the 
love that is in our group. I rely so often on the stories of others to inspire 
me, give me perspective...to hold hope for a better tomorrow and to stand tall 
in the belief that "This too shall pass" as my dad used to say...when things 
were really bad..  I had a rough year starting last September with heart 
issues, then got worse in December...and stayed struggling through the 
spring...starting to feel a bit strongerstill vulnerable, but fighting 
spirit is back...and I am here...to see the hummingbirds out my window...flox 
is in full bloom75 degrees  and sunny today.so life is good for 
now...later today seeing the cardiologist to swap medicines...then oncologist 
Friday. CPK stil supper high so muscle continues to waste..I hardly recognize 
myself and its affected my kidneys..all the protein going through them...Will 
get blood work done in a couple of weeks at U of C...last test in June had 
cancer showing...at low levels...had to go off for a drug holiday because of 
toxicity...so only back on for three weeks. We shall see how I am doingI am 
seeing Dr. Druker in October...he always makes me feel hopeful and calmhe 
has a way about him that invites this...and for which I am always so grateful..


I know each of you has had your strugglesphysically and emotionally...I 
think of you often and pray for each of you every nightGreenie, especially 
you and your wife,this first year of grieving Derek...your 
anniversary.so hard to bare...I m holding 7 clients who have lost adult 
children in my practice. I brought them together in a group to so they could 
meet one another and share their stories, introduce their children and share 
their grief.
 
I thought of you and wondered if something like that might be helpful to you..I 
know there are many supports in your area through local hospices and I think 
Health Park...God willing I will be down by you in December as I was supposed 
to be last year before everything erupted..
Hope to one day give you a big hug. 


and to the rest of you..love, hugs and 18'sit feels good to write 
something...




Beth



-Original Message-
From: 'Susan Rosenthal' via CMLHope 
To: cmlhope 
Sent: Tue, Aug 8, 2017 6:49 am
Subject: Re: [CMLHope] Gleevec

Contact Dr. Druker in Portland, Oregon.

Hugs,
Susan Rosenthal

> On Aug 8, 2017, at 6:57 AM, Ken Roberson  wrote:
> 
> Good morning everyone,
> I just discovered that this site is still active.
> I have been on Gleevec for 17 years with good results, but have had 
> additional medical challenges.
> I was a member of the original participants for the STI571(Gleevec) at Johns 
> Hopkins Hospitals in Baltimore after trying everything else on the market for 
> CML with no success.
> I am now 75 and thanks to God, family, and numerous medical staff I have been 
> around long enough to have become a grandfather.
> Very best wishes to everyone in their battle with cancer.
> Ken Roberson
> 
> Sent from my iPad
> 
> -- 
> -- 
> [CMLHope]
> A support group of http://cmlhope.com
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Re: [CMLHope] Gleevec

[bkbarney via CMLHope]

Dear Ken,

Welcome back. 17 years and still going strong!  Thank you for sharing your 
story...what a  wonderful gift you shared with all of us here. People here are 
very kind and also, very resilient. Many of us have had additional medical 
challenges because of our treatments. We are simply  more vulnerable to other 
issues happening over time...I guess our genetics combined with the effects of 
the long term use of these TKI's...

I do not know what your other health issues are, but I agree with Susan. It's 
worth putting in a call to Dr. Brian Druker in Portland Oregon and just seeing 
his thoughts 17 years later...so much progress has been made and many people 
find one TKI over another is easier for them to tolerate.   Dr. Druker's number 
is: 503-494-5596  My best to you...




Beth


-Original Message-
From: 'Susan Rosenthal' via CMLHope 
To: cmlhope 
Sent: Tue, Aug 8, 2017 6:49 am
Subject: Re: [CMLHope] Gleevec

Contact Dr. Druker in Portland, Oregon.

Hugs,
Susan Rosenthal

> On Aug 8, 2017, at 6:57 AM, Ken Roberson  wrote:
> 
> Good morning everyone,
> I just discovered that this site is still active.
> I have been on Gleevec for 17 years with good results, but have had 
> additional medical challenges.
> I was a member of the original participants for the STI571(Gleevec) at Johns 
> Hopkins Hospitals in Baltimore after trying everything else on the market for 
> CML with no success.
> I am now 75 and thanks to God, family, and numerous medical staff I have been 
> around long enough to have become a grandfather.
> Very best wishes to everyone in their battle with cancer.
> Ken Roberson
> 
> Sent from my iPad
> 
> -- 
> -- 
> [CMLHope]
> A support group of http://cmlhope.com
> -
> 
> You received this message because you are subscribed to the Google Groups 
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Re: [CMLHope] Gleevec

['Jeanie' via CMLHope]

Good to hear from you.  Most of us are hanging in there. 
I now take Ponatinib.   This is the fourth tki I've been on.  
Doing great on it. 
Good luck to a brave warrior. 
Jeanie 

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 Aug 8, 2017, at 8:17 AM, Myvety2k via CMLHope  
> wrote:
> 
> Welcome Ken back to the club that no one wants to be in but glad that we have 
> it so that we can all help each other out.
>  
> greenie
>  
> In a message dated 8/8/2017 6:57:28 A.M. Eastern Daylight Time, 
> krobers...@mindspring.com writes:
> Good morning everyone,
> I just discovered that this site is still active.
> I have been on Gleevec for 17 years with good results, but have had 
> additional medical challenges.
> I was a member of the original participants for theSTI571(Gleevec) at 
> Johns Hopkins Hospitals in Baltimore after trying everything else on the 
> market for CML with no success.
> I am now 75 and thanks to God, family, and numerous medical staff I have been 
> around long enough to have become a grandfather.
> Very best wishes to everyone in their battle with cancer.
> Ken Roberson
> 
> Sent from my iPad
> 
> -- 
> -- 
> [CMLHope]
> A support group of http://cmlhope.com
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Re: [CMLHope] Gleevec

[Myvety2k via CMLHope]

Welcome Ken back to the club that no one wants to be in but  glad that we 
have it so that we can all help each other out.
 
greenie
 
 
In a message dated 8/8/2017 6:57:28 A.M. Eastern Daylight Time,  
krobers...@mindspring.com writes:

Good  morning everyone,
I just discovered that this site is still active.
I  have been on Gleevec for 17 years with good results, but have had 
additional  medical challenges.
I was a member of the original participants for the  STI571(Gleevec) at 
Johns Hopkins Hospitals in Baltimore after trying  everything else on the 
market for CML with no success.
I am now 75 and  thanks to God, family, and numerous medical staff I have 
been around long  enough to have become a grandfather.
Very best wishes to everyone in their  battle with cancer.
Ken Roberson

Sent from my iPad

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RE: [CMLHope] Gleevec

['Susan Zimmerman' via CMLHope]

Hello and welcome back Ken!  Congrats on becoming a grandfather. It's a great 
experience, eh? I have four, only two of which are still children.

Glad you are still in the battle. Whatever the outcome, we win the war!


Susan F. Zimmerman


On Tuesday, August 8, 2017 Ken Roberson  wrote:
Good morning everyone,
I just discovered that this site is still active.
I have been on Gleevec for 17 years with good results, but have had additional 
medical challenges.
I was a member of the original participants for the STI571(Gleevec) at Johns 
Hopkins Hospitals in Baltimore after trying everything else on the market for 
CML with no success.
I am now 75 and thanks to God, family, and numerous medical staff I have been 
around long enough to have become a grandfather.
Very best wishes to everyone in their battle with cancer.
Ken Roberson

Sent from my iPad

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Re: [CMLHope] Gleevec

['Susan Rosenthal' via CMLHope]

Contact Dr. Druker in Portland, Oregon.

Hugs,
Susan Rosenthal

> On Aug 8, 2017, at 6:57 AM, Ken Roberson  wrote:
> 
> Good morning everyone,
> I just discovered that this site is still active.
> I have been on Gleevec for 17 years with good results, but have had 
> additional medical challenges.
> I was a member of the original participants for the STI571(Gleevec) at Johns 
> Hopkins Hospitals in Baltimore after trying everything else on the market for 
> CML with no success.
> I am now 75 and thanks to God, family, and numerous medical staff I have been 
> around long enough to have become a grandfather.
> Very best wishes to everyone in their battle with cancer.
> Ken Roberson
> 
> Sent from my iPad
> 
> -- 
> -- 
> [CMLHope]
> A support group of http://cmlhope.com
> -
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[CMLHope] Gleevec

[Ken Roberson]

Good morning everyone,
I just discovered that this site is still active.
I have been on Gleevec for 17 years with good results, but have had additional 
medical challenges.
I was a member of the original participants for the STI571(Gleevec) at Johns 
Hopkins Hospitals in Baltimore after trying everything else on the market for 
CML with no success.
I am now 75 and thanks to God, family, and numerous medical staff I have been 
around long enough to have become a grandfather.
Very best wishes to everyone in their battle with cancer.
Ken Roberson

Sent from my iPad

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