Hi All
Thank you for the support of finding Zavie Miller Zero Number Participants
What great success we have had
>From Number 1 [Marty G] to No 1381 Alison ? from the UK
Ms Fran Mauri Comment in 2010
1366 Entries (zero number presentations)
947 valid Email Addresses
260 Invalid Email Addresses [European Addresses?]
149 No email Addresses
________________________________________________________________
>From 2010 to 2011 there were 9 Zero numbers presented to # 1375
>From 2011 to 2012 there were 6 Zero number presented to # 1381
# 1381 is the last Number of the Zavie Zero Club Member List
"
Colour code : Member is deceased
Administrator
Same person/2 numbers
2 names for same number
Number checked on web
Entry in red
Info to be checked
Even though there are 1381 Zero Numbers
We have been able to find and verify and cross check 1000 presentations as
being correct
Some names such as Alison – we have not been able to find her surname – but
have info that this is the last number
We have the facebook page - https://www.facebook.com/groups/1673390782910601/
Named ZAVIE - CML ZERO CLUB MEMBERS - WHERE ARE YOU ?
We have four adminstrators from around the world (Two in Australia) (one in
France) (one from the UK)
We also have a Registrar and keeper of the Zavie Zero List – we are still
updating – with new surnames, people who have passed, where people are now
living
Also the facebook page is able to reconnect people with each other –
The Zavie Miller Zero List has been downloaded on a file from this page
We are vetting any new members to the page to ensure they have CML and a Zavie
number
I am also sending Marty a Zavie Zero List that we currently have so he can
share with you guys if you request from him
Other than that – please join facebook link attached
Sue Hurt
#1197
From: [email protected] [mailto:[email protected]]
Sent: Sunday, 1 May 2016 6:21 PM
To: Digest recipients <[email protected]>
Subject: [CMLHope] Digest for [email protected] - 7 updates in 3 topics
[email protected]
<https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview>
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<https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview>
Topic digest
View all topics
* Zavie's Zero Club.xls - 2 Updates
* Our son Alan Sago - 3 Updates
* Prayers are offered. - 2 Updates
<http://groups.google.com/group/cmlhope/t/cb7384fbaba8c8a7?utm_source=digest&utm_medium=email>
Zavie's Zero Club.xls
Marty Gartenberg <[email protected] <mailto:[email protected]> >: Apr 30 12:36PM
-0400
So Joyce, you say that "I just don’t have anything worth reporting" Well
you just did. A family all getting together especially a now member of your
family who you haven't seen as yet.
A lot to think about isn't it?💟
18's,
Marty
.
Marcie Goodman <[email protected] <mailto:[email protected]> >: Apr 30 06:26PM
-0400
Susan, the feelings are very mutual. You are an inspiration to me. I am indeed
blessed with a wonderful support system. Hoping that Monday or Tuesday my
husband will head to inpatient rehab. He's a good patient, never complains and
is so gracious and kind. The nurses love him and go out of their way to ensure
he is comfortable and taken care of. I expect there will be bumps in the road
ahead but nothing we can't get through together. Just like you and Roy and all
of our dear friends on this site!
Much love, Marcie
Sent from my iPhone
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Our son Alan Sago
Jim Sago <[email protected] <mailto:[email protected]> >: Apr 30 05:40AM -0700
Alan has CML since September of 2001 and is doing well with Glevleec (I'm
not sure of the spelling). I joined this group shortly after that and have
mostly just read the post. Alan is Zavie's number 524. He has been very
lucky to have little or no side effects from the drug and has been on 400
daily. It was started after he failed with about 7 miserable months with
chemo injections. Night sweats, fever, nausua, cramps, and on and on. He
became so depressed and his personality changed from a sweet boy to the
point that one might fear for the safety of a Grizzely bear left alone with
him. Then came the permission to try the new drug. I think it was called
STsome number and later named gleveec. He stopped all treatment for two
weeks and then started the oral pill. Wow, the symptoms stopped. In 6
months little or no phillys in the blood and in a year little or none in
the bone marrow. After two years none detectable in the marrow. Twice he
saved cells for marrow transplant; but, was doing so well with the oral
pill that he did not have the transplant. We think the CML is as good as
can be expected and the doctors in Cleveland tell him that his CML would
not even be found by a doctor if they were not told of it. No more bone
marrow samples and apparent smooth sailing future.
In late 2013 he reported a sore on his tongue to his dentist. It was
ignored. Later, because of pain he demanded a biopsy and it came back
cancer. He then saw a cancer specialist in oral cancer and it was
determined that he need a major surgery very soon. On Jan 2014 three
surgeons removed about a third of his tongue and about 3 by 4 inches of the
right inside of his throat. They used a large area of his left inner
forearm muscle, circulatory and nerves to rebuild the removed tumor. The
forearm wound (it looked like a shark bite) had to be covered by skin from
his thigh. He had a trach tube and feeding tube when he was released from
the hospital. Much to our surprise he could speak when the tube opening
was blocked with his hand. It was poor - but we could understand him. The
trach tube was removed a couple of months later and the feeding tube was
moved to directly enter the stomach. He could talk but not eat. About a
month after the surgery he was given 60 targeted radiation treatments to
the mouth and throat. Now he has been stated to be cancer free in the
mouth and throat. After about a year more the feeding tube was removed and
he now survives on Ensure and some soft mushy foods that it is very
difficult to get the tongue to process correctly. He was strong enough to
go back to work last June and is still working.
The radiation destroyed his saliva glands and his mouth needs extensive
repair to allow better speech and feeding. Even though the medical
treatment caused the mouth damage - INSURANCE WILL NOT COVER THE NEEDED
MOUTH REPAIR as it is consider a dental problem. The repair is estimated
to cost up to $20,000 out of pocket. The to date medical and care expenses
have been overwhelming.
My wife and I are retired and living with SSI and consuming what we were
able to save with our living and helping him as much as we can. Two days
ago I started a GoFundMe campaign to try to get money for his mouth
repair. Please consider prayers for him and his mouth repairs to heal. If
you are interested in viewing the funding page or chose to donate anything
the page is *gofundme.com/2w8gspvw*. There are pictures and more details
there. The fund seems to be a good beginning as it has already received
almost $2000.00 from our friends on Facebook and them sharing it on their
friends pages.
I hope that I am not breaking any rules of the group to report this
information.
Thanks for any consideration. Especially the prayers and the donations if
any will be sincerely appreciated.
Jim (78yrs) and Judy (73rs) Sago
Marty Gartenberg <[email protected] <mailto:[email protected]> >: Apr 30 12:26PM
-0400
Hi Jim,
I am truly sorry to hear of your son's problems and I know that they will
get better. I am sending a prayer for him. To explain, I had a bone marrow
transplant way back in 1989 as well as removing my spleen and many more
problems followed almost twenty years afterwards but I have dealt with all
of them including my kidneys failing and on dialysis for four years then
finally getting a kidney transplant following a stroke two years later
then a prostate operation then A severe MRSA infection then a CMV
infection, then A-fibs that would make me faint so I now have a pacemaker
and a whole lot of other drugs, as well as many other things.
The reason that I am telling you this is because no matter how much you
your wife and your son goes through, and some may be very difficult to go
through you are still alive and you must enjoy each and every day of your
lives because there is always a shining light in your paths.
Now I know Zavie and his wife Ida very well and he actually gave me the
first Zavie's zero hat marked number 1 and I still have it today.
Zavie always believed that he was able to help other people with CML as I
always did and still do today. By the way the drug that was discovered by
Dr. Brian Druker was first caller STI-571 then when the FDA approved it,
then was called Gleevec, but it is also called Gleevic in some of the
countries "beyond the pond"
Now this is the prayer I was talking about, It was pasted on the outside of
the plastic bubble that I had to live in for seven months in the hospital
by a friend of mine. So I am now passing it on to you so that you can read
it every day of your life. Just look at what it and continues to do for
me when ever I really need it.
18's, (meaning life)
Marty
On Sat, Apr 30, 2016 at 8:40 AM, 'Jim Sago' via CMLHope <
Marcie Goodman <[email protected] <mailto:[email protected]> >: Apr 30 06:19PM
-0400
Jim, God Bless to you and your family. Your son is lucky to have such loving
and devoted parents.
Marcie
Sent from my iPhone
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<http://groups.google.com/group/cmlhope/t/8e2290e2ac226652?utm_source=digest&utm_medium=email>
Prayers are offered.
Marty Gartenberg <[email protected] <mailto:[email protected]> >: Apr 30 12:29PM
-0400
Just one thing to say Richard H. Your like the rock of Gibraltar.
18's to you!
Marty
Icandoallttc <[email protected] <mailto:[email protected]> >: Apr 30
04:58PM -0400
I'm sorry too. With illness it's like taking one step forward and one step
back. The good thing is that we are all still stepping.
Our stories can be someone's uplift for the day.
Let's hear from everyone and keep our stepping stone well.
Each day is a treasure and God will see us through the rough ones. ❤️❤️
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
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