Re: [CMLHope] 3 months off Gleevec

['Susan Rosenthal' via CMLHope]

Tony:

This Oct. 2, 2017, I will have been off Gleevec for two years.

So far, I've remained undetectable-had on blip February 2015, but Dr. Druker 
assured me that happens about 4 months out and that the next month would show 
undetectable again.  Been undetectable since just like he said

Had my last PCR test in June at his office.  I live in Miami and will be 
getting another PCR test this month!  Keeping fingers crossed!

Hugs,
Susan Rosenthal

> On Sep 2, 2017, at 11:45 PM, Tony Lanoue  wrote:
> 
> I just read last week on one of the Facebook groups that somebody has been 
> off Gleevec for two years now and their counter remain stable. I am your 
> other hand tried going off last year and my counts started coming back up. So 
> this year I switched to Sprycel, going to stay on the Sprycel for one year 
> then try to discontinue use. The studies show that people are having more 
> success staying in remission after being on Sprycel. But like I said before 
> some people are having success after being treated with Gleevec also! 
> 
> Sent from my iPhone
> 
> On Sep 2, 2017, at 8:30 PM, Marty Gartenberg  wrote:
> 
>> Do you see just what the meaning of 18's is...
>> 
>> Well all that counts is that your finally off of Gleevec. GOOD FOR 
>> YOU
>> 
>> 18's,
>> 
>> Marty
>> 
>>> On Sat, Sep 2, 2017 at 3:58 PM, nycotb176  wrote:
>>> Going on 16 yrs on 400 gm of  Gleevec, when I was diagnosed with sclerosis 
>>> of the Liver. My Oncologist at Moffitt Cancer Center lowered my dosage to 
>>> 200. After a year, I was still in remission.No Philadelphia Bug found in 
>>> the last 15 yrs. Six months ago I was told I may be a candidate for a 
>>> clinical trial for individuals like me. I had to go thru a list of 
>>> questions and when I was done I was told the trial had closed. I decided to 
>>> take my self of the Gleevec and spoke to my oncologist and he told me that 
>>> he felt I may be CURED (Which I don't like that word) Well its been 3 
>>> months so far and no changes. Looking forward to the future. I was also 
>>> told I would have to be off Gleevec for two years before they would be able 
>>> to tell me the good news. Has anyone else tried to go off Gleevec
>>> -- 
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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
> 
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Re: [CMLHope] New Facebook Group - ZAVIE - CML ZERO CLUB MEMBERS - WHERE ARE YOU

['Susan Rosenthal' via CMLHope]

Marty:

My hat was personally given to me by Zavie and Ida as well/  My number was 584

Hugs,
Susan


> On Jul 19, 2017, at 10:45 AM, Marty Gartenberg  wrote:
> 
> Hi Tony, I do have a list of the numbers and names but I am not here in my 
> home in Florida because I am currently in my other house in Pennsylvania, but 
> you may want to get in touch with Bobby her number is 840. I think she may 
> have them. By the way my Zavie's zero number is 1 and my hat was personally 
> handed to me by both Zavie and his wife Ida when that came t Florida to visit.
> 
> 18's,
> 
> Marty
> 
> On Wed, Jul 19, 2017 at 9:56 AM, Tony Lanoue  > wrote:
> Hello, if anybody has a copy of Zavie's zero club list, could they tell me 
> what my zero number is please? Hope everyone is well! 
> Tony
> 
> 
> Sent from my iPhone
> 
> On Jun 5, 2017, at 11:43 AM, Robert W Neill Jr  > wrote:
> 
>> A new Facebook reunion group has been started for Zavie's Zero Club members
>> 
>> https://www.facebook.com/groups/1673390782910601/ 
>> 
>> 
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Re: [CMLHope] Digest for cml...@googlegroups.com - 1 update in 1 topic

['Susan Rosenthal' via CMLHope]

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

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

Hugs,
Susan Rosenthal

Have a wonderful day

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

['Susan Rosenthal' via CMLHope]

Be careful with tonic water if your hemoglobin is low.  It is possible to have 
it go lower.

Hugs,
Susan Rosenthal

Have a wonderful day

> On Oct 18, 2016, at 9:17 AM, bvision  wrote:
> 
> Please add me to the Z's list too.  Gleevec from 2003-2008, Tasigna 
> 2008-present.
> 
> Also, try tonic water for those cramps.  I always keep bottles of Schweps or 
> Canada Dry in the fridge.  Just down an 8 ounce glass and be amazed.  Works 
> for me, has trace amounts of quinine, I'm told.
> 
> Blessings to all
> 
> >...rb
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[CMLHope] How Am I Doing?

['Susan Rosenthal' via CMLHope]

Jeanie and others:

I am doing great...I hope  I just sent in my 10 month (since October 2, 
2015) TKI-free 6 week PCR test.  My fingers are crossed.

When we don’t hear from Marty, we know that something is going on.

Hugs,
Susan Rosenthal

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[CMLHope] To Susan Zimmerman

['Susan Rosenthal' via CMLHope]

Susan:

Are you able to have an appointment with Dr. Druker in Portland, Oregon?

At least email him

Hugs,
Susan Rosenthal

Have a wonderful day

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

['Susan Rosenthal' via CMLHope]

Victoria:

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

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

Hugs,
Susan Rosenthal

On Jul 12, 2015, at 6:19 AM, cmlhope@googlegroups.com wrote:

 cmlhope@googlegroups.com  Google Groups  
 Topic digest 
 View all topics
 Digest for cmlhope@googlegroups.com - 2 updates in 1 topic - 1 Update
 Digest for cmlhope@googlegroups.com - 2 updates in 1 topic   
 Victoria Reiter vkrei...@gmail.com: Jul 11 08:47AM -0400 
 
 My onc told me that I could not take the shingles vaccine nor any
 live-virus vaccine. I've been on Gleevec since 2000.
  
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[CMLHope] Jeanie

['Susan Rosenthal' via CMLHope]

THIS IS ABSOLUTELY WONDERFUL news to hear!

Hugs,
Susan Rosenthal
Miami, FL

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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 7 updates in 2 topics

['Susan Rosenthal' via CMLHope]

Richard:

Awesome news!  Please make sure that you're monitored every three months.  I've 
been on 250 mg since 2008...monitored PCR and PK testing every three months by 
Dr. Druker.  I'm visiting with him in July.  I think he will further reduce me 
to 200mg since I'm still have eye bleeds, eye swelling, cramping has been okay 
but not great, some edema in my ankles, among the many side effects.  But, hey, 
I'm alive and have 4 grandchildren now!!!

Marty, I'm so glad you are aiming to continue to have better health everyday!

Sherri, that's VERY exciting news about your PCR.  Dancing in the rain is a 
great spirit...means nothing is going to phase you when you're flying high!

I just got a reminder today that Zavie's birthday is on June 4th.  A flood of 
great memories and sad ones flew in my face.  I miss him terribly.  Zavie 
ALWAYS gave us hope when we thought here was not any hope.  In 2003, I emailed 
him once I began Gleevec.  I explained that I had a low grade temperature.  He 
said that I was not supposed to have a temperature.  But I did and it was 100.5 
annoyingly. I guess I should have known from that day forward my journey would 
be much different than anyone else's but we did not know this until 6 months 
later.  Zavie learned many new things from me and I learned a lot from Zavie.

It's an amazing journey because Dr. Druker also learned a lot of things about 
me and my Gleevec journey.  I am still on Gleevec and still very much alive and 
just take each day as a new day learning to solve problems as they appear, 
when they appear and if they appear.

The irony is that there are new TKIs out there and doctors nowadays will switch 
a patient immediately.  It is Dr, Druker's and my thoughts that if the switches 
happen so frequently now that there will not be options out there for others if 
they've gone through them all.  Like Dr. Druker told me two years ago, he was 
glad we stuck with the Gleevec because I still have MANY options out there in 
case Gleevec stops working for me.  This gives me a very soft cloud to rest on 
everyday.

Hugs,
Susan Rosenthal
Miami, Florida
Ex on January ..rvb 
Sent from my iPad

 On May 28, 2015, at 6:22 AM, cmlhope@googlegroups.com wrote:
 
 
 cmlhope@googlegroups.com  Google Groups  
 Topic digest
 View all topics
 A bit of good news today - 4 Updates
 Today's Doctor visit - 3 Updates
 A bit of good news today   
 sherri swanson swanson.sherri...@gmail.com: May 27 02:04PM -0500 
 
 Hi Everyone!
  
 In the mist of all the bad news I've been getting lately, I got some good
 news this afternoon. My Onc called me to tell me that my BCR/ABL was
 undetectable. So with that that good news still ringing in my ears, I went
 for walk. AS I was walking it started to rain. I just didn't care. I
 continued my walk like it was a sunny day and 85 degrees. I really needed
 that good news.
  
 L'chaim
  
 Sherri
 Icandoallttc icandoall...@aol.com: May 27 04:13PM -0400 
 
 Great news Richard and Sherri. You are truly cml warriors!! Keep the faith. 
  
 Prayers  Blessings Jeanie 18,s
 Dx 1/2004
 Started Gleevec 2/2004
 Started Tasigna 9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015
  
 Marty Gartenberg wa2...@gmail.com: May 27 06:57PM -0400 
 
 Sherri
  
 PCRU! EXCELENT
  
 18's for sure.
  
 Marty[?] You need a great big hug!
  
 On Wed, May 27, 2015 at 3:04 PM, sherri swanson swanson.sherri...@gmail.com
 Richard H rbhuffm...@gmail.com: May 27 08:51PM -0700 
 
 Great News. Toy deserve it. Someplace in my gospel collection is a song 
 called Steppin Out on the Clouds .. Keep thinking how great it is to be 
 able go Dancing in the Rain and watch your energy grow.
  
 18's
  
 Richard H..
  
 On Wednesday, May 27, 2015 at 2:04:48 PM UTC-5, Mosey wrote:
  
 Back to top
 Today's Doctor visit   
 Marty Gartenberg wa2...@gmail.com: May 27 09:37AM -0400 
 
 Richard, I'm not going to be polite so here it is. YOU ARE KICKING *ASS*.
 Yea!!!
  
 So you now deserve this poem.
  
 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...
  
 18's,
  
 Marty
  
 margoo...@aol.com: May 27 12:42PM -0400 
 
 Congratulations, Richard. Great news!
  
  
  
 -Original Message-
 From: Richard H rbhuffm...@gmail.com
 To: 

[CMLHope] Dr. Druker and Marty

['Susan Rosenthal' via CMLHope]

Susan:

I do not remember meeting you or Sharon.  However, I was chosen by the LLS to 
introduce him…I thought that was a real honor. 

He is as awesome as you saw him as he is a doctor.

Every having CML does indeed have their own story to tell, that is for sure.

Hugs,
Susan
-

Marty:

Thinking of you…only 18's for you!!!

Hugs,
Susan

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