Re: [CMLHope] Update on Marty G

[Tanya Metaksa]

Hi Shaun,
Although I knew your father through the CML Hope group only, let me express my 
sincere condolences on his passing. He was a very upbeat and kind person who 
had a good work and lots of encouragement to all that frequented this group. 
Thank you for letting us know.
Tanya Metaksa
> On Nov 11, 2018, at 6:45 AM, myvety2k via CMLHope  
> wrote:
> 
> Shaun, My name is David Greenberg and am so sorry to hear the news of your 
> Father passing.  He meant so much to our group and was ALWAY'S there when we 
> ALL needed him. He WILL be MISSED.
> 
> David (greenie) Greenberg
> 
> 
> -Original Message-
> From: Marty Gartenberg 
> To: CMLHope 
> Sent: Sun, Nov 11, 2018 1:54 am
> Subject: [CMLHope] Update on Marty G
> 
> Hello everyone - 
> 
> This is Marty Gartenberg's son, Shaun.  It is with great sadness for me to 
> say that my father passed away this past week, on Wednesday, November 7th, 
> after having entered hospice care the previous Friday, November 2nd.  I know 
> many of you were good friends with him and that he helped a lot of people 
> through this support group.
> 
> This all started with a bad fall over 7 weeks ago on September 15 in his 
> garage where he fractured his left femur.  He subsequently underwent surgery 
> to get a rod implanted in the bone to help it heal.  After a few weeks of 
> physical therapy, a checkup showed that one of the screws needed to be 
> adjusted, so he had a second surgery for that to adjust the rod, and add a 
> plate.  After having more therapy, a MRSA infection was discovered in the 
> incision wound.  He also contracted pneumonia.  In order to combat the 
> infection, he had a third surgery on the incision to perform a debridement of 
> the wound and was put on course of several antibiotics.  He was admitted to 
> the ICU to be treated for the complications of the infection.
> 
> Unfortunately, all of this became just too much for him to take.  While he 
> did show improvement medically, and eventually went from the ICU into a 
> regular hospital room, he was in a lot of pain, which got progressively worse 
> each day all over his body, and discomfort from the effects of the 
> antibiotics.   Eventually, he began denying his food and medication and 
> reached a point where he did not want to continue to fight.  
> 
> Moving to hospice was a painful decision to make, especially knowing how much 
> of a fighter my Dad was through all of the struggles he's been through in his 
> life.  But, those were his wishes and we didn't want him to continue to 
> suffer.  The hospice care did make him comfortable and he finally passed 
> Wednesday afternoon.  After not having had his heart medicines (and others) 
> for so many days, his heart rate was in the 160's, and I guess it finally 
> gave out, but we don't know the exact cause.  I believe he passed peacefully, 
> though.  He was 74 years old.
> 
> I am so grateful and blessed to have had my Dad in my life, and I know he 
> touched countless others lives all over the world.  His altruism inspired me 
> throughout my life.  Please keep him in your prayers and thoughts.  
> 
> His funeral will be this Monday, November 12th at 11:00 AM, at the Beth 
> Israel Memorial Chapel in Boynton Beach, Florida, followed by burial at the 
> Eternal Light Memorial Gardens cemetery at 12:15 PM, also in Boynton Beach.  
> My family and I will be sitting Shiva (a Jewish mourning ritual at home) 
> Monday evening and Tuesday and Wednesday afternoon and evening.
> 
> Regards,
> Shaun
> 
> -- 
> -- 
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Re: [CMLHope] ZAVIE ZERO NUMBERS

[Tanya Metaksa]

Hi there,
My husband, George Metaksa, was a Zavie Miller Zero Number Participant.  
However, I have lost the computer in which his number was sent and do not have 
it.
It probably was prior to 2010 because he became undetectable in approximately 
2006-2008.  If you could figure this out, I would be very grateful.
Tanya Metaksa
On May 1, 2016, at 10:37 AM, Sue <hol...@iinet.net.au> wrote:

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/ 
<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: cmlhope@googlegroups.com <mailto:cmlhope@googlegroups.com> 
[mailto:cmlhope@googlegroups.com <mailto:cmlhope@googlegroups.com>] 
Sent: Sunday, 1 May 2016 6:21 PM
To: Digest recipients <cmlhope@googlegroups.com 
<mailto:cmlhope@googlegroups.com>>
Subject: [CMLHope] Digest for cmlhope@googlegroups.com 
<mailto:cmlhope@googlegroups.com> - 7 updates in 3 topics
 
cmlhope@googlegroups.com 


Google Groups 
<https://groups.google.com/forum/?utm_source=digest_medium=email/#!overview>
  
 
<https://groups.google.com/forum/?utm_source=digest_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
 <>Zavie's Zero Club.xls  
<http://groups.google.com/group/cmlhope/t/cb7384fbaba8c8a7?utm_source=digest_medium=email>
Marty Gartenberg <wa2...@gmail.com <mailto:wa2...@gmail.com>>: 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 <margoo...@aol.com <mailto:margoo...@aol.com>>: 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
 
Back to top 
 <>Our son Alan Sago  
<http://groups.google.c

Re: [CMLHope] How beautiful is this!!!

[Tanya Metaksa]

Lovely!
On Apr 11, 2016, at 12:18 PM, Marty Gartenberg  wrote:

"The opposite of love is not hate, it's indifference. The opposite of art is 
not ugliness, it's indifference. The opposite of faith is not heresy, it's 
indifference. And the opposite of life is not death, it's indifference." - Elie 
Wiesel 


How beautiful is this!!!
Take a few moments to calmly look through these pages - they turn for 
you
 
DON'T MISS A WORD OF THIS.
How beautiful is this!!!  Have the sound on.
  The pages will turn themselves, if not, click the left button.  
 
Every once in a while a truly special email comes through that really begs to 
be passed on to dear friends.  Click on below:
 
https://www.youtube.com/embed/SN5c-m45fxs 

 

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Re: [CMLHope] Re: Anyone gone off medication after remission?

[Tanya Metaksa Gmail]

As I said we started with 100 mg and that brought his counts to PCRU, then the 
onc decided to try 70 with the same results, now it is 50.  No other blood 
tests than what he gets at UCLA when he goes.
We now go only 3 times per year for blood tests and a chat with the Onc.

Tanya
On Feb 20, 2010, at 6:39 AM, ted...@aol.com wrote:

 Tanyahow did they determine that 50 mg of Sprycel would work?  Did they 
 do blood tests to check for concentrations in the blood, etc?  I am on 100 mg 
 which they said is the standard dose.  I too had problems with Gleevec and 
 Tasigna...and Sprycel seems to be working for me.  Tom in KY
  
 In a message dated 2/19/2010 8:34:20 P.M. Eastern Standard Time, 
 tanya.meta...@gmail.com writes:
 My husband, George, who was diagnosed in Aug 2004 was on Gleevec until Dec 
 2006.
 He had extreme reactions to the Gleevec, so his Onc took him off for 6 
 months.  It took almost 
 all that time for his counts to start climbing.  Then in July 2007 he started 
 Sprycel 70 mg for almost
 two years without many of the reactions that he had on Gleevec.  Now he is on 
 Sprycel 50 mg
 and doing very well.  Give it a try.
 
 Tanya
 On Feb 18, 2010, at 2:35 PM, T wrote:
 
  My doctor has just suggested that I come of or take a holiday from
  Gleevec, watch what happens then perhaps try an alternative drug if I
  come out of remission. I was diagnosed around three years ago and have
  been in complete remission about two years. The reason for the break
  is she feels the toxicity of the drug has risen,,ie,,,lots of water
  retention/inner ear pressure/bloating/etc. I am dubious but also want
  to see what life would be like without it...Still wondering which way
  to go. Have a cardiogram scheduled to see if any fluid around heart
  that may be the clincher. Good luck and will keep you all posted
  should I go off the Gleevec ( if interested)
  
  On Feb 12, 7:03 am, Realpro ansaris...@gmail.com wrote:
  Hi All,
   I have been on Gleevec since 2001 and now in complete remission.
  My doctor mentioned during my last visit that some patients have gone
  off medication completely after being in remission for more than 2
  years. I am doing fne with Gleevec  and am wondering if it is risky to
  stop it now? Any one on this list stopped medication after remission?
  Best Regards,
  Syed
  
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Re: [CMLHope] More Questions About Gleevec

[Tanya Metaksa Gmail]

Pat,
I don't know if you read my post that was an answer to getting off Gleevec.  My 
husband had horrendous side effects with Gleevec.
My husband, George, who was diagnosed in Aug 2004 was on Gleevec until Dec 2006.
He had extreme reactions to the Gleevec, so his Onc took him off for 6 months.  
It took almost 
all that time for his counts to start climbing.  Then in July 2007 he started 
Sprycel 70 mg for almost
two years without many of the reactions that he had on Gleevec.  Now he is on 
Sprycel 50 mg
and doing very well.  Give it a try.
Now there is Sprycel and Tasignia to try.  If your onc doesn't want to try, I 
would suggest you find another.
I don't know where you live, but find a cancer center, preferably a teaching 
hospital, near you and talk
to them.
We live outside Las Vegas, NV.  When my husband was diagnosed we were referred 
to a cancer Dr in
Las Vegas.  He admitted that George was only his 5th patient with CML.  He put 
George on Gleevec at
the time, but didn't have many answers to his questions.  We got on this list 
and others, researched
where they were doing trials and found out that UCLA was doing trials.  So we 
made an appointment to
see the  Dr in charge of the trials and went there.  They do not use bone 
marrow tests, so there is no pain
involved in our visits--they do all their diagnosis with blood test that they 
have developed at UCLA just for
CML.  We have been going there ever since.  Sometimes you have to look beyond 
your local area.

I have read on these lists of people traveling across the USA to go to CML 
cancer specialists and from
those posts I gather that they have been pleased with their choices.

Tanya
On Feb 20, 2010, at 1:37 AM, pat2202...@yahoo.com wrote:

 First of all can anyone tell me if they know anything about K a.k.a.
 I Ain't Finished Yet. She has been such a support and comfort to me
 for the 5 years I've had cmlmy Gleevec fog, I just didn't realize
 I had not heard from her since the last day of Oct 2009. I sent her an
 email but it was returned. Please let me know if anyone has heard from
 her.
 In a previous post, I explained how I have never shaken the Gleevec
 side effects. I got one response from Kellyis there anyone else in
 the group...please share your story with me. I can't go on like this
 much longer, my quality of life is not worth what I'm going through.
 Love,Peace,Hope  Prayers, Pat
 
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Re: [CMLHope] Sprycel

[Tanya Metaksa]

My husband switched to Sprycel several years ago because Gleevec had  
too many side effects.  It has worked well with fewer side effects.
As for going back to Gleevec, I doubt it, but there is Tasigna (sp?)  
as well.

Tanya
On Nov 22, 2009, at 6:58 AM, Lee wrote:

 A friend of ours is starting Sprycel on Monday and asked me to inquire
 about some helpful tips about the medication. According to his
 doctor,Gleevec is no longer working for him. Once a patient is
 switched from Gleevec to another, is it possible to go back to Gleevec
 if those results are not favorable? Would appreciate any personal
 experiences with Sprycel.
 Thanks.
 Blessings to all,
 Lee

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[CMLHope] Re: Sprycel

[Tanya Metaksa]

Hi there,
could you post the site that you found concerning side effects with  
Sprycel.  My husband has been on Sprycel for approx
two years and has had terrific stomach aches.  He has had all the  
stomach tests and nothing has been found, so the onc decided to
stop Sprycel for a month. Now he is back on it and I have had him on a  
vegetarian diet and the stomach aches have subsided.
Still worried about the Sprycel and stomach problems.

Tanya
On Mar 14, 2009, at 10:00 AM, Suzan Collins wrote:

 Hi everyone. After 4 1/2 years on Gleevec my doctor switched me to  
 Sprycel. I had continued to have multiple side effects on the  
 Gleevec so in late Nov he put me on the Sprycel. I really seemed to  
 do better on it but I did notice my hair was coming out pretty fast.  
 It never did that with the Gleevec. However, I did develop some  
 pretty severe skin ulcers about 3 weeks after starting the Sprycel.  
 I didn't think much about it but I found a site about Sprycel the  
 begining of March and it showed that skin ulcers were a serious side  
 effect. I showed it to my doctor and he stopped it right then. It  
 states that less than 1% of people are affected with the skin  
 ulcers. I had been being treated for them since Dec by my regular  
 doctor and not until I found that article did we put two and two  
 together. My onc was glad that I found the information because he  
 was unaware of this serious side effect to Sprycel. I am the only  
 CML patient at this cancer center. Now he is going to put me on  
 Tasgnia. Wish me luck with it.
 Suzan


 



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[CMLHope] Re: Blood in Urine

[Tanya Metaksa]

My husband who has had CML since July 2004, found blood in his urine  
in August 2006.
It wasn't a side effect of the Gleevec.  Good luck on your visit to  
the urologist.  If you
did not have an appointment, I would reccomend one ASAP.
Tanya

On Jan 24, 2009, at 4:54 AM, Lee wrote:


 Good morning, all!
  Have any of you experienced blood in the urine while taking Gleevec?
 I found out yesterday (better late than never) that my husband has had
 this for about 5 days.  Needless to say, he now has an appointment
 with the urologist first thing Monday morning.  I read that this is
 one of the side effects when taking Gleevec. He has been on Gleevec
 for a year and a half now. Any information would be very much
 appreciated.

 Blessings to all,

 Lee
 


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[CMLHope] Re: antidepressants

[Tanya Metaksa]

My husband has been taking Cymbalta and Gleevec for 2 years and then  
Cymbalta and Sprycell for another 2+ years.  No problems

Tanya
On Jan 23, 2009, at 11:22 AM, daniel wrote:


 hi all,
 anyone with experience taking gleevec and antidepressants? if so, did
 your dr mention any contraindications, etc? i'm considering taking one
 and am curious if there is anything i should be concerned/aware of.
 thanks in advance.



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[CMLHope] Re: stomachache

[Tanya Metaksa]

Hello Ana,
My husband was on gleevec for over 2 years with constant stomach  
aches, nausea with vomiting
and the general achiness.  When Sprycel was given the green light by  
the FDA he was switched.
Many of his symptoms disappeared and he is doing much better on  
sprycel.  Talk to your Mom's
Dr and be sure to check if her insurance covers both meds.

Tanya

 --- On Fri, 1/2/09, Ana anab...@hotmail.com wrote:

 From: Ana anab...@hotmail.com
 Subject: [CMLHope] stomachache
 To: CMLHope@googlegroups.com
 Date: Friday, January 2, 2009, 11:52 AM


 After 5 years in gleevec my mother is having alot of problems with  
 her stomach, she is always nauseous and I was wondering if sprycel  
 would be better , what do you think?


 



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[CMLHope] Re: Taken off Gleevec

[Tanya Metaksa]

My husband spent two years on Gleevec and it worked great for the CML.
He didn't have as many symptons as you had, but it was awful.  When he
switched to Sprycel the difference was night and day.  Talk to your doc
about going on Sprycel--it is different.
Hope this helps.

Tanya
George dx 8/02
Gleevec 400 until 1/07
Sprycell 70mg since 4/07

On Oct 27, 2008, at 6:04 AM, kellyelise wrote:


 Hi Everyone:

 I recently had my 3-month checkup at Cleveland Clinic. I have been
 experiencing double vision - notice it most when outside (sun) and
 driving. People 10 feet away - their faces are just a blob. Road signs
 are 2 of them superimposed upon each other, just about impossible to
 read. I can see well enough to keep my vehicle between the lines, but,
 anything I try to focus on is really a complete blur. Once I return
 inside, out of the sun, the double vision/blurriness dissipates. I
 have been having chronic headaches, pretty much all over my head -
 sharp pains in the left side of my head. My memory loss has become
 almost frightening.
snip


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[CMLHope] Re: Gleevec or Dasatinib

[Tanya Metaksa]

My husband who became PCRU in 8 months after he was diagnosed with CML  
(2004) had terrible
side effects with Gleevec.  After sticking with Gleevec for 2 years   
his doctor at UCLA finally put
him on Sprycell (dasatinib) two years ago.  The side effects  
immediately became fewer and
he is much happier on dasatinib.  Our 2 cents worth.

Tanya





On Sep 21, 2008, at 7:26 PM, sheila wrote:


 Hello!  I don't post much, but I really need some help here. To make a
 long story short I was disagnosed 3 years ago in August 2005 with cml
 at Mayo Clinic at first I was diagnosed by a local oncologist  with
 myleofibrosis at this time I was a month past my 37th birthday.  That
 doc sent me on to Minnesota where they did another bmb and found that
 I had the philly chromosome.  I started gleevec 400 mg right away and
 was monitored by a doc from Indy and he kept in touch with Mayo. I
 responded great at first, at diagnosis I was 98% philly + with in 3
 months I was down to lower digits and Mayo was very happy and told me
 they would see me in 6 months, well by December my white count went
 too low so my Indy doc had me taking gleevec everyother day. This
 bounced my white count back up but it also started my phiily's to
 increase and my platelets to rise.  So when I went back to Mayo in
 March 2006 the philly's were on the rise so they increase the gleevec
 to 800 mgs and monitored me very close and I was getting every other
 week shots for the low white count until finally by Sept 2006 I was
 finally zero with my FISH test. So since I have stayed on 800mgs then
 they started doing a pcr test and I have yet to reach zero I am at
 0.05% I have the FISH and the pcr test done every 3 months, I have
 blood drawn and sent up to Mayo then I drive 8  hours from Indiana to
 get my results (crazy!) I have a tendency to go up a little then 3
 months later go down then 3 months I go up a little then back down,
 they gave me a graph so I could see this.  I have been zero on the
 FISH since 2006 and they tell me that this is the test that they
 really go by but now the Mayo doc tells me he wants me to switch from
 gleevec to dasatinib.  My Indy doc and me talked about it before and
 we both agreed that if it ain't broke don't fix it so Mayo is
 letting me decide what to do but they highly recommend the switch.  I
 have very few side affects with the gleevec and the Mayo doc told me
 all the side affects from the dasatinib which totally freaked me out.
 My husband thinks I should stay on the gleevec and so do I, but I just
 don't know if that really is the right decision and that's where I
 need some help here!  Anyone's opinion would be greatly appreciated.

 Thanks!

 Sheila

 


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