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Reposting news re Zavie Miller: RIP. You were #1 for so many with CML!

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#1 ChrisC


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Posted 09 January 2012 - 08:52 PM

From Sandy's post on CML Support UK


I am sorry to inform you that Zavie Miller died yesterday from complications after a stroke some  8 months ago.
Zavie was an indomitable personality and will be missed by many in the wider global CML community.
We send our deepest sympathy and condolances to his wife Ida and his two daughters Mara and Sandy from all at the CML Support Group.
It is with profound sorrow and deep regret that we must inform you all that Zavie peacefully drew his final breath and closed his eyes for the last time on January 9th, 2012 at 15:21 with his wife and daughters at his side.

Ida, Mara and Sandy are deeply distraught and will be unreachable while arrangements are being made over the next few days.

With love,
Zavie's girls, Ida, Mara and Sandy

MILLER, Zavie. On Monday, January 9 2012, in his seventy-fourth year, Zavie closed his eyes for the last time with his girls by his side, after a courageous and determined 8 month battle.  Beloved husband and life partner of Ida for forty-five years, treasured father to Mara and Sandra Miller, cherished brother of Joyce Miller and lifelong friend to many.  Predeceased by his father Samuel Miller, mother Dora Miller (née Fefergrad) and brother Lionel Miller.  Zavie was an unfailingly devoted husband, father, brother, uncle, cousin and friend.  He touched the lives of countless people through his kindness, his photography, his calligraphy, his involvement with the PCG and the NGC, the SOGH and his work with Zavie's Zero Club which supports and advocates for members of the CML community worldwide.  His zany sense of humour, fierce love and respect for life are a legacy that will remain in our hearts forever.  Zavie's girls would like to thank all the friends and family who have
been by our side throughout every step of this journey.

Be alert, but not overly concerned.


• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!



#2 reedgirl



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Posted 09 January 2012 - 08:57 PM

So sad to read about this.  I had hoped that my husband Greg would get a number in Zavies Zero Club, after 18 months he has still not reached that goal.  Thoughts and prayers are with his family!


#3 Marnie


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Posted 09 January 2012 - 09:19 PM

I am so sorry to hear this.  It was clear from Zavie's following that he was well-loved by many people.  All my best to his family. 


#4 hannibellemo


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Posted 09 January 2012 - 10:29 PM

RIP, Zavie. So many of us looked forward to meeting you in Las Vegas at your Zero Club Convention!

Pat, #1307



"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#5 soundoff


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Posted 10 January 2012 - 12:08 AM

RIP Zavie!

Thanks for the number

#6 Pin


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Posted 10 January 2012 - 12:24 AM

How sad One of the things I remember about being diagnosed and reading about other people's journeys was really hoping that one day I would get a Zavie's Zero Club number.

You can post a public (or private) message to Zavie's family here: http://www.paperman.com/en/funerals/2012-1-12-Zavie--Miller

Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.


2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14

#7 PhilB


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Posted 10 January 2012 - 07:01 AM

A lovely man who did so much to bring hope to so many people.  His 'Yahoo Yippee!' whenever another person made it to CCR always made my day.  If anyone has the necessary IT skills, and if his family approved, it would be wonderful if someone could set up a memorial website that continued to issue his numbers.

Phil #1277

#8 everonward


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Posted 11 January 2012 - 01:10 PM

This is very sad news. Can I second Phil's idea for a memorial website. Zavie will be greatly missed.

Marian #1145

#9 Susan61


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Posted 11 January 2012 - 03:02 PM

I have not been on the computer for a few days, and I just got the sad news about our Zavie.  I was #293 in Zavie's Zero Club.  My prayers go out for Ida and his family, as its always harder on the ones who are left behind.

They are asking that everyone have a moment of silence at 1:00 on Jan. 12th.  I am assuming that is the day of his funeral.  I have no details, and just going by what I have found out by others.  I think that would be a great memorial to him for a lot of us who have never met him, and only knew him through the discussion boards.

RIP Zavie

#10 BethG


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Posted 11 January 2012 - 03:39 PM

I am so tremendously sad to read this news! Zavie was a true inspiration and an amazing ambassador in the CML world. I well remember his warm welcome when I joined this crazy world and his support when the rug pulled out from under me., and then his joy when I finally became a member of his zero club. What an incredible human being. I will light a candle and say prayers for him.


#11 Trey


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Posted 11 January 2012 - 06:15 PM

Email March 2006:



Number 963 in the Zero Club


"You were #1 for so many with CML!"

[Info corrected by Phil below -- thanks]

Message was edited by: Trey Fox

#12 PhilB


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Posted 12 January 2012 - 04:40 AM

Zavie was most definitely #1 in so many ways, but many people don't know that he was actually #102 in his own club.  What that means is that he was celebrating and encouraging the success of others well BEFORE he managed to achieve CCR himself, which is truly awesome.  I will be thinking of him at 5pm UK time today (1pm EST) along with so many others around the world.

#13 helenet


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Posted 12 January 2012 - 05:58 PM

Although I did not know Zavie personally-- I felt as though I did.  His update for "Our Chat"-- and the wonderful pictures he would send with his update allowed one to live vicariously through his life and camera lense.  He is sorely missed!  What a wonderful man.  ZAVIE- YOU ROCK!  Thank you for all that you have done to encourage all those stricken with CML. 

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