I was diagnosed in 2003, too!
Susan Rosenthal
Miami, Florida
> On Sep 26, 2019, at 7:43 PM, sherri swanson
> wrote:
>
> Hi Ken,
>
> Glad to hear your doing well. I too take Gleevec but take 600mg. Like you I
> was DX in 2003 and have been on 600mg since then. My blood is almost
>
CML HOPE group:
I was just thinkingthat’s dangerous.
I think that those that posted the most kept this group going by posting. So,
I believe that if we all still wrote, others would respond.
It’s the silence of non-posting that makes people think we’re inactive.
But most of us are still
https://m.facebook.com/groups/1773182359626063/?ref=group_browse
This is another really good CML group on Facebook where Anjana is! She’s
awesome!
Hugs,
Susan Rosenthal
> On Sep 17, 2019, at 10:09 PM, Robert W Neill Jr wrote:
>
> This email group has not been very active for months after
I’m still here!
Hugs,
Susan Rosenthal
> On Sep 16, 2019, at 11:10 PM, bkbarney via CMLHope
> wrote:
>
>
>
> -Original Message-
> From: Joyce Mesnarich
> To: cmlhope
> Sent: Mon, Sep 16, 2019 2:08 pm
> Subject: Re: [CMLHope] Not getting any mail
>
> Hi Jeanie.
> I think we all
Jeanie:
Could it be a tic bite?
Please see a doctor, though!
Hugs,
Susan Rosenthal
> On Mar 31, 2019, at 12:30 AM, bkbarney via CMLHope
> wrote:
>
> Jeannie,please go to a doctor and have it looked at. Whatever it is, bug
> bite, spider bite, or whatever..it does not sound good. could be
Shaun;
I am so very sorry to hear about your Dad. Marty was an inspiration to
everyone and a real fighter, not just for himself, but for everyone.
I wish you and Marty’s rest of the family, many 18’s, as Marty would wish that
to everyone else. Even though he has passed on, his help and love
Beth, Susan Z. and Jeanie:
Thank you for your good wishes. I do follow you all but I have just not
posted.
Hugs,
Susan
On Thursday, August 4, 2016 at 3:22:00 PM UTC-4, Beth wrote:
>
> Susan,
>
> I am so deeply happy for you! thanks for sharing such good news. Love, Beth
>
>
> -Original
Mr. Noles:
I am so sorry to hear about Nadia. Because I still see her gardening, I
picture her still gardening up in heaven. May those happy memories linger in
your mind and sustain your spirit while you go through this difficult journey
ahead. I am sure that there are many more happy
Richard and Greenie:
I have been on 250mg of Gleevec now since 2008 or so. I'd have to look up the
correct date. But in order to be on this dosage I am being closely monitored
by Dr. Druker with PK and PCR tests every three months. I still have side
effects with this dosage. I just had one
http://www.onclive.com/peer-exchange/chronic-myeloid-leukemia/When-Should-Patients-Receive-Follow-up-Mutational-Tests
Long time no write...
Might be useful to some of you...clink on link above.
Hugs,
Susan Rosenthal
--
--
[CMLHope]
A support group of http://cmlhope.com
You are most welcome…just wish I knew who you were!!!
Hugs,
Susan Rosenthal (from Miami)
On Sep 25, 12:18 pm, lad...@aol.com wrote:
Thank you, Susan! You are an inspiration to all! :-)
In a message dated 9/25/2011 6:43:16 A.M. Eastern Daylight Time,
--
[CMLHope]
A support group of
TO everyone who has a teenie concern about food and Gleevec:
I have been on Gleevec since April 2003. I am alive and kicking
because of it. So, I look the other way to side effects.
I am the throw up queen while on 600 mg of Gleevec from 2003-2005.
Once reduced to 400 mg, I remained almost
Good evening, everyone:
This is the letter that was sent out from Tracey to let everyone know
about Zavie. I did not hear anything about a stroke. I do know
that while Zavie was down here in Miami, he was complaining about his
leg and the extreme about of discomfort he was in. He was in good
I just came back from seeing Dr. Druker in Portland, Oregon. After
discussing that it only took 5 years to finally find the right mix for
my system and seeing how great I look (barring the 30 pounds I
gained), I asked him why he thought that Tasigna and Sprycel might be
considered above Gleevec.
I REMEMBERED what I wanted to post! YEAH for Gleevec brain!!!
Has anyone on Gleevec experienced tinnitis? I have had it since about
two months after beginning Gleevec. If you do have it, is there
something that works for you? I love my low sound crickets but
would love for them to go away.
Greenie and SuzieQ:
I also had my gall bladder removed! I was told at the time to avoid
French sauces, foods HIGH in fats and at the baseball games---DO NOT
EAT A WHOLE BAG OF PEANUTS at one sitting. I actually did eat one
whole bag of peanuts in one sitting and I paid for it dearly during
the
Dear Everyone:
I need a little help here. I responded to Sheila privately to spare
her anything embarrassing. However, she was VERY aggressive and I
HAVE NEVER been treated like this before. I conferred with Zavie as
well and he semi-agreed with me...let me know what you think and how I
could
To Everyone Out there:
Very early on just before beginning Gleevec, Dr. Druker explained to
my husband and I that Gleevec does rob the system of Calcium and
wanted to know if I was taking any. I said I was. He asked me which
one I was taking. I told him Citrical PLUS---he told me that was
I was put a long time ago on a potassium water depleting drug. Dr.
Druker, Ccarolyn (his nurse) and my local oncologist all finally
agreed after about 3 months that it was not strong enough. I was then
put on the minimum dosage of Lasix and event that dosage needed to be
upped. So, water
druk...@ohsu.edu
Hugs,
Susan
On Mar 20, 5:01�am, pat2202...@yahoo.com pat2202...@yahoo.com
wrote:
Can anyone give me Dr. Druker's email address? I had it, have
consulted with him before but lost the address...have it here in a
journal but can't seem to find it. It would be greatly
Pat:
First of all, I have been away from this site...people call me a
lurker! Dr. Druker has called me the Queen of All Gleevec Side
Effects This is my upcoming 7th year being on Gleevec---April 10th
is the anniversary! My quality of life was tremendously
impacted...after 11 transfusions, Dr.
AH! Those fine days of nausea...what wonderful memories. There are
still times out of nowhere, I will have a bout and then it just
disappears for about 6 months. I have tried to pinpoint it but it
does not always work. I do know one trigger-bananas.
Now for the good point here...ginger
Susie Q: perhaps Moffit in Tampa would be a good option for you...how
far away is that for you?
Jeannie: The muscle spasms is just a reminder that we have CML. I am
on 2250 Citrical PLUS continuously prescribed by Dr. Druker. Even on
this dosage, I still have horrific muscle spasms. I do
I found this on the internet about the new Dr. Druker drug...
http://ash.confex.com/ash/2008/webprogram/Paper5261.html
Hugs,
Susan
--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
-
You
Suzzie:
There are different feelings with the eye bleeds. Some of them you
have no warning and they just appear and you have no symptoms at all!
Others, you might feel a sharp discomfort just prior to the eye
bleed. Since you have not had any since 2000, I would not be too sure
that this one
Okay, I have lurked long enough. I want to respond to everyone and
just kept quiet. My husband and I ventured out for my bi-annual sixth
month check up from Miami, Florida to Portland, Oregon to see Dr.
Druker. Of course, my status remains super. I listen to your stories
of woe and wonder
Jeanie:
I see Dr. Druker every six months. My local oncologist I see every
month...just got promoted since I had to see him every week, then
every 2 weeks and now we are doing it month...like a breath of fresh
air
Hugs,
Susan
PS how often do you see Dr Druker and is the only Onc you
Dear Group:
I know that you are all trying to figure out what causes CML. I know
that I did at the beginning as well since it is a shock to the system
to find out and then question why...
Because I go to Dr. Druker, I have some insight into this matter at a
personal level. First of all,
Good day to all of my supporters:
You have all asked me to share with you my new webpage for this 2008
Light the Night on September 27, 2008. This is solely being shared
because you are my friends, You are under NO OBLIGATION to submit any
monies! Your support is totally enough for me!
Dear Barb and Giora:
Good Morning, ladies! Dr. Druker stopped using Dr. Egorin temporarily
since this past October 2007. I do not know why other than Novartis
set up a center in Delaware. My unerstanding is that this center was
developed specifically to watch patients who were not complying
I do know that the LLS has another reimbursement program BUT you need
to be in the upper 5% of proverty. It is worth checking this out.
$5000.00 one way and then another $5000.00 for helping with the
donut hole! $10,000.00 is nothing to sneeze at if you qualify!
Novartis does have a patient
I believe in my gut that the pain is real. Since I am one of the
lucky ones to have had most of the side effects of Gleevec, I think
that I am pretty good at diagnosing. The problem is is that none of
us are willing to go off Gleevec to tell you definitely that Gleevec
is the culprit or not.
For what it is worth, I take Citrical PLUS (it has magnesium and
Vitamin D). I am on 2250 a day for cramps and I am only on a 200/300
mg alternating Gleevec dosage. Two tabs=one dose. When I was on 600
mg of Gleevec, I was on 3000 mg of Calcium. Gleevec really robs the
body chemistry of
Guys, when you are having issues with Gleevec and REALLY want to know
the answers, hop on a plane (LLS might even pay for it within their
scholarships) and talk with Dr. Druker. He is the inventor and the
master with Gleevec. Why pussy foot around with your lives at stake?
I do not get it
Dear Everyone and Anjana:
First of all congratulations to Suzieq for her 4th anniversary. I was
shocked when I realized that this was my 5th. So, I am right between Suzieq
and
Anjana's husband, Roy!
I rarely post but I had to! Sorry!
The nested PCR, which Dr. Druker uses BUT only
Deb:
If you go through and get the transplant, you need to look at the
Centers of Excellence and ask you r insurance company which are
their centers that they pay for. United Health Care worked with me on
this in 2003-2004 because I was having so many reactions to Gleevec,
that Dr. Druker
I found the recommendation from Oregon!
Hugs,
Susan
Carolyn Blasdel 3/20/2007 7:46:49 AM
Susan,
Percocet is OK. It contains oxycodone and acetaminophen and comes in
several different strengths. It is recommended that you keep your total
acetaminophen dose at 2000 mg or less a
Dear Richard and Barb:
I think you may remember me. If not, I HAD the same symptoms.
Gleevec holidays are NOT okay with Dr. Druker. IF I CAN GO THROUGH 11
transfusions, so can you!!
There are two ways that I know of to have your Gleevec levels
monitored. It is called a PK level. One place
Suzan:
Howdee! This lady might have had CLL. CML still has a death rate of
3 months to 6 years if not treated medically. CLL is a slow mover.
Unless there are symtoms, you do not treat it at all. Once there are
symptoms, it needs to be treated aggressively. The treatment plan of
CLL once on
Dear Suzieq and Lori:
Great going you two! I lost my 41 pounds with Weight Watchers from
January 3 to May 15, 2007 I am at 128 to 129 from 169!!!
Hugs,
Susan
dx. January 8rd, 2003
Began Gleevec: 4/10/2003
Ceased Gleevec: 4/21/2003
Rebegan Gleevec: 4/25/2003
Tranfusion dependent: May
Lori, Rebeccah, and Barb and all the future WW particpants out there:
Look what I started? I think it was Barb who began this whole
conversation about diet and WW and etc.! Anyway, I am glad to be an
inspiration to anyone! Weight Watchers happens to be a very sound
program. I agree
Barb:
Hello. I also do not have a gall bladder!!! Maybe this is why we are
on such a low dose of Gleevec
The only foods I cannot have a lot of (because of the gall bladder
removal are like French sauces, fresh onions that are not cooked and a
ton of peanuts---guess too much fat in
Dear Group:
Good Day to all of you.
I began Weight Watchers on January 3rd, 2007. I am also a lifetime member
since I had children. I never weighed like I did since on Gleevec (Procrit
did not seem to help either)
I weighed in at a hefty 169 pounds. I now weigh 130 pounds I
Skip:
I apologize for not writing you earlier.
I had transfusions from May 2004 to November 2005---that makes for one
year and one half...constantly visiting the hospital every four to six
weeks...depending on if the Procrit was working for me. My dosage on
the Procrit went from 40,000 units
Barbara:
I am not a 200 mgI am on 200 one day and 300 the next alternating
making it averaging 250 per day! WE ARE VERY LUCKY...I am so glad
that I see Dr. Druker! I love my hematolgist here in Miami as well.
They both look out for me immensely! When my quality of life was
suffering, they
Susan:
I was diagnosed (1/08/2003) at 31.2 (which is not very high). I
needed to tritrate off another medication not related to CML so I
could begin Gleevec. Dr. Druker said that he did not want me to go
past April 15th. He must have known what he was talking about because
on April 10th
John:
I have been seeing Dr. Druker since February 2003. With Dr. Druker,
he believed in doing BMB's once every year. Once I became
undetectable in BOTH the nested test and the preliminary test, he then
told me once every two years!
I was diagnosed on January 8, 2003. Began Gleevec on April
Good Afternoon, Everyone:
First of all for Pat:
If you have a PCR or negative with a nested test of negative, Dr.
Druker recommneds a BMB/BMA every 2 years. Prior to this phase with
Gleevec, Dr. Druker recommends a yearly test. He likes the new
peripheral blood test BUT he is still looking
Good Afternoon, Everyone:
First of all for Pat:
If you have a PCR or negative with a nested test of negative, Dr.
Druker recommneds a BMB/BMA every 2 years. Prior to this phase with
Gleevec, Dr. Druker recommends a yearly test. He likes the new
peripheral blood test BUT he is still looking
Well, I have successfully made it to almost 4 years (began Gleevec on
April 10th but was Diagnosed on January 8, 2003)
My PCR test came back negative AND when that happens the most
sensitive test called the nested test must be performed. I am happy
to announce to the WORLD at large that my
Cindy:
You last sentence prompted me to have to respond.
I guess because I am seeing Dr. Druker, that means I need to go see
another doctor because of your statement. If I do not do the protocol
that you say, then I am being ill advised.
Because I am PCRU, I am only getting ONE BMA/BMB every
To the person who said that Gleevec is out of your system in 4 days:
I can only tell you out of experience that this statement is
so-o-o-o-o-o totally untrue! 4 days? NOT!
I was taken off Gleevec for four days JUST to see if the symptoms from
the initital dose would reduce in problematic
I also have my registration with Light the Night Walk. If you happen
to be in Miami, Florida on Saturday, September 16, 2006 walk with me
from 6:00pm to 9:00pm at Bayside, Bayfront Park. There will be dinner
as well.
You do not need to donate but I would love for you to look at my
website!
Ruth:
If you are a survivor or have cancer, Cure Magazine subscribes you
for free. I am getting it for free. You may write to them or call
them and ask for it!
Hugs,
Susan
Miami, FL
--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
According to BOTH of my doctors, these levels are just a curiosity.
They have noticed more raised levels when a patient has low hemoglobin
and/or edema. Dr. Druker has found this interesting. At one time, he
was curious about it but I am not sure if he ever did follow up more in
research on
Here we go folks. I knew that I was not crazy yet. Carolyn worte me
from Dr. Druker's office. I will leave her message in tack so that you
hear what the message says rather than what I heard.
Hugs,
Susan
Nested refers to the methodology of how the test is done; I do not
know exactly
this is from Carolyn (Dr. Druker's nurse):
PCR testing for bcr-abl is complex; there are controversies about
different things and the field continues to evolve.
There are a significant number of false positives with nested PCR--I
assume that is what the first part of the message below is
I have to disagree with the person who said that the PCR is the most
sensitive test out there. The most sensitive test out there in the
USA, according to Dr. Druker, is that if you reach PCRU, which I have,
then an additonal test is added called the nested test whihc
examines, I believe 1 in
How do I post? I know that I am a member but POSTING is not
available. Until we get this straightened out, please email Anjana for me
or forward this to her...Let me know when the mail issue is resolved and also
when you sent this email to Anjana!
Anjana:
I have been seeing Dr. Druker for
I figured it out. It says to start a new
topic.
Susan
--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
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