I didn’t think anyone could mess with your meds unless you okayed it.
Good health to all.
Thanks again and bless you.
Jeanie
On Sep 18, 2019, at 7:37 PM, rszim0702 via CMLHope <cmlhope@googlegroups.com> wrote:
I am here! Not been on as much lately.
Last test I was in MMR, so elated abo
I am here! Not been on as much lately.Last test I was in MMR, so elated about that. Great to see you on here, Greenie. And of course Jeanie, thank you for posting!Hope you and all are doing well as we all get a wee bit older. Stay strong, blood buddies!!!Hugs,Susan ZimmermanOn Sep 16, 2019 6:27 PM,
both you..
Stay positive and now that lots of us out here are thinking of you.
Happy holidays!!
18's Beth
-Original Message-
From: rszim0702 via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Sat, Dec 15, 2018 10:00
Sorry for the new diagnosis, Jeannie! I got news I now have fibromyalgia myself. Along with IBS, I have to make myself go out of the house. All of you keep warm and have a wonderful Merry Christmas!!! It is what you make it. 18's and hugs,Susan ZOn Dec 15, 2018 9:10 AM, esd...@rogers.com wrote:
Dear Shaun and family,Would like to comfort you as your dad so often comforted each one of us. No words except what a marvelous, godly and extravagant legacy he left for you. He left it for the cml group as well! The time spent with each of us was his ministry of joy over us all. He will surely be
Marty,That ole mean slewfoot keeps attacking you with broken leg, etc. Try to do what you encourage all of uskeep smilin' and countin' your blessings! So sorry that endurance comes into play again.All youze guys out therekeep smilin' and doin' what you can do!18's and big hugs,SzOn Sep 25,
Hooray Jeanie! I also learned this week that I have reached MMR again! Been about 4 yrs. since this has happened. Sooo happy!Dear Beth,Will intensify my prayers for you to get through this very serious state of affairs. Your positive attitude always does my heart good when I read your posts. I know
Prayers & Blessings Jeanie \uD83D\uDC1F\uD83D\uDC1F18,s
Dx 1/2004
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
On Jun 5, 2015, at 10:21 AM, rszim0702 via CMLHope < cmlhope@googlegroups.com>
wrote:
Doing fine here. Today hubby has a heart cath, so trusting the Lord to bring
him through. They think there is a blockage.
Hope you are continuing to improve.
18's,
Susan Z
-Original Message-
From: Marty Gartenberg
To: CMLHope
Sent: Fri, Jun 5, 2015 7:35 am
Subject: [CMLHope
ing that for all of you, too!
18's and blessings on your birthday,
Susan F. Zimmerman
On Thu, May 21, 2015 at 12:54 PM, rszim0702 via CMLHope
wrote:
Hey Marty, hi!!!
I know everyone is de
Remember what I once told you, Leukemia is a disease of not
only the body but the mind as we..
8's,
Marty
On Wed, May 20, 2015 at 4:28 PM, rszim0702 via CMLHope
wrote:
Guess you and I are kind of on the same track.both were off ever
Guess you and I are kind of on the same track.both were off everything for
quite some time, now my number is .01%, near 0and you are, too! Every day
is a gift. We will be on vacay next week in Virginia, but I will catch up to
your results sometime after Tuesday!
Going to the Shenandoah
Yay, Richard!!! I'm also expecting your BCR/ABL to show you are much lower
than the last time! Let us know!
18's,
Susan
-Original Message-
From: Richard H
To: cmlhope
Sent: Fri, May 15, 2015 6:46 pm
Subject: [CMLHope] Today's CBC
today's HEM was 10.4 up from 8.7 l
g
To: cmlhope
Sent: Tue, May 5, 2015 2:56 pm
Subject: Re: [CMLHope] My article re: CML
Well, well well Susan Zimmerman .01 Hugs,
I also notice that you use 18's as well. Good!
18's right back at you
Marty
On Tue, May
w down to twice a
year. As I grow older, other things are beginning to be bothersome but I
suppose that's so completely normal, I shouldn't be surprised. And how are YOU
doing?
On Fri, May 1, 2015 at 4:49 PM, rszim0702 via CMLHope
wrote:
I enjoyed the st
so very true, Marty. An excellent presentation, thank you as usual! Keep
fighting the good fight of faith for your victory! We are all praying for you
and with you.
You make our lives so much richer because YOU are sometimes our HOT CHOCOLATE!!!
Love and 18's,
Susan F. Zimmerman
"Ask of
I enjoyed the story, Vivi! So much of the gleevec story paralleled mine with
the side effects. Very interesting to read about your dancing classes, etc.
May all your dreams come true as you continue your journey to live a life well.
Blessings,
Susan F. Zimmerman
-Original Messag
Hi Jeanie,
I was wondering why they didn't try bosulif on you before the ponatinib? My
doc told me last week she reserves ponatinib as the last resort and actually
has no one on it now. She's a specialist at Northwestern if you remember.
Hate hearing you are having such troubles, praying fo
Hi Carol,
I have been off gleevec for over 6 years now. (Was on it for 2 yrs, 3 mos.)
My numbers are slowly climbing. I have tried sprycel and tasigna and had
problems with both. Now the only remaining one left to try is bosutinib. I
have a tendency to have brain bleeds, which can certainly
Thanks for being persistent, Marty. I have seen this before and loved it the
second time, too!
Blessings,
Susan F. Zimmerman
"Look among the nations and watch; be utterly astounded! For I will work a
work in your days which you would not believe, though it were told you." Hab.
1:5
--
Dear Michelle,
Many condolences, thoughts and prayers going your way. It is never easy to
lose a parent. Both of mine are gone now so I totally understand your
feelings. You hate to see them suffer, but you hate to see them leave you!
May your strength and faith in God propel you through t
To Marty and Millie,
You are both so sweet and ready to help in times of trouble. Thank you both
for being sensitive to the needs of others and being part of this group. You
add sooo much!
18's,
Susan F. Zimmerman
"Look among the nations and watch; be utterly astounded! For I will work a
It doesn't have to be Sunlight soap.any bar of soap has worked for me each
time. Crazy but true!!!
Susan Zimmerman
-Original Message-
From: john barrons
To: cmlhope
Sent: Wed, Sep 22, 2010 6:58 am
Subject: Re: [Bulk] [CMLHope] mussel cramps comming more frequently (need
advice
Best wishes to you. Know that these side effects will calm down when your
body adjusts to the drug.
I also just became diabetic but am determined to beat it with proper diet.
I am on a pill at present for the diabetes. Hope to come off it soon.
Blessings,
Susan
In a message dated 7/12
Thanks for the great synopsis, it was helpful to many I'm sure. However, I
wish the first sentence below was true.
It is very possible by other's testimonies on here that the CML will return
after achieving PCRU if the drug becomes non-effective at some point. Also if
you go off the medicati
Someone asked about going off gleevec after remission. I have been on gleevec
since Valentine's Day 2005 until May of 2007...
when I had a brain bleed with no lasting effects, thank goodness. At that time
I went against the doctor's orders to go onto a different medication after
trying tasig
Thanks so much Kelly for sharing. I've been on the lowest dose of zoloft
for about a year, but when I start sprycel I will remember what you said
about Pristiq. Thanks a bunch!
Susan
--
[CMLHope]
A support group of http://cmlhope.com
-
You
Hello Maggy and Kelly,
I had to get off gleevec 400 mg also because of eye bleeds and a brain bleed.
This was 2 1/2 yrs ago and I refused anything all this time,
doing fine. But...since my husband lost his job and my fish tests showed 40%
leukemic cells in my body while still in cytogenetic
For Tony, yes my counts are slowly rising, have about 40% leukemic cells in my
blood now but still in cytogenetic
remission. I try to go as natural as possible with eating and supplements and
also have a biofeedback machine
called a SCIO machine which treats me weekly for leukemia. I think that
Thanks for the post, Maggie May regarding eye bleeds. I had 2 1/2 yrs on
gleevec after diagnosis on Feb 14, 2005. Then a brain bleed with many eye
bleeds beforehand caused me to stop. I have been on nothing for 2 1/2 more
years, still in cytogenetic remission, but soon will have to go back to
Dear Gay,
Thank you for the tip on bilberry extractI will get on it right away!
Susan
--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
-
You received this message because you are subscribed
Hi Jeanie,
Yes, I went to MD Anderson in Orlando because Dr. Pinilla sent me there
after my brain bleed to
become involved in a clinical trial for Tasigna. All these hoops to jump
through to be accepted in the clinical trial and then one dose and I had to
go off of it immediately because o
In response to Jeannie, I have been under the care of a doc at Moffitt for
quite some time. He sees 200 CML patients a week, and he admitted my
problem was beyond him with the platelets and was the one who told me he knew
of
no hematologist except at MD Anderson in Houston who was capable.
I remember them fondly..even though I'm off gleevec now due to a brain
bleed, when I did
have the spasms the remedy is quinine, either pills or water, but it works!!?
Also keep up with
the calcium intake, it helps when you can't find quinine.
Anyone else ever have any eye bleeds or brain ble
Hi Jeanie,
I do go see Dr. Pinilla and hope there will be no problem in getting back in
to him. He's been ordering my blood tests ever since going off meds. I bet
you were upset over what happened in going to see him. I really like him.
Since I was unique in what happened, he wants to s
Hello Greenie,
Thanks for writing. I also moved from northern Indiana, (South
Bend/Mishawaka) about 13 years ago down to Florida. I used to be involved in
a women's
group that took me all over Northern Indiana. Were you part of Women's Aglow
Fellowship?
Anyway, I am not taking anyth
-Original Message-
From: rszim0...@aol.com
To: CMLHope@googlegroups.com
Sent: Tue, 24 Mar 2009 11:11 am
Subject: [CMLHope] Re: Novartis Advisory Board- Tasigna/Gleevec
My arm went numb and one side of my face.? They tested me and that was
itthought I was havign a s
My arm went numb and one side of my face.? They tested me and that was
itthought I was havign a stroke at first, and it was a minor one with no
lasting effects, thank God.? Have you had any problems with gleevec?
Susan/rejoicer
-Original Message-
From: myvet...@aol.com
To: CMLHope@
Hi Barb,
I was on gleevec 400 mg for two and a half years and then suffered a brain
bleed that stopped me from taking it anymore.? I would like to know if the 1%
that was reported to have brain bleeds has now increased?? Also do they have
any suggestions on what to do from here?? I am taking not
Hi Jeanie,
Thanks for writing. I love your e-mail address, I am a Christian also. The
onc did not try a lower dosage as since having brain bleeds is so serious,
he didn't want to risk it, and at the time I chose not to risk it. He wanted
me to go on sprycel but I refused. Now after I test
This is quite different in that I cannot take it at all because of causing a
brain bleed which could be severe enoughtokill me.
I think all of them are related enough that I am going to have to rely on
natural medicine and God only to keep me alive.?
Do you know of anyone else on this site who
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