That is great! Finding the right doctor is the best medicine.
I was with my first Onc for 5 years and I really liked him, and then I had
so many problems he just didn't know what to do.
I decided then to go to Moffitt; so glad I did.
Good luck!
Jeanie3
--
--
[CMLHope]
A support group of
and wonderful Sunday! Let's celebrate our
lives together!
18's,
Susan
-Original Message-
From: ICANDOALLTTC icandoall...@aol.com
To: cmlhope cmlhope@googlegroups.com
Sent: Sun, Jul 21, 2013 9:47 am
Subject: Re: [CMLHope] Re: Hi..Susan's Life who did the doc recommend?
Hi Susan, Great
@googlegroups.com_ (mailto:cmlhope@googlegroups.com)
Sent: Sun, Jul 21, 2013 9:47 am
Subject: Re: [CMLHope] Re: Hi..Susan's Life who did the doc recommend?
Hi Susan, Great uplifting story.
A question? Who did Dr Pinilla recommend to you?
Hang in there.
Blessing,
Jeanie3
In a message dated 7/20/2013 8:34
us and what lies before us are tiny matters compared to
what lies within us
Angie
From: Susan Zimmerman rszim0...@aol.com
To: cmlhope@googlegroups.com
Sent: Saturday, July 20, 2013 6:14:10 PM
Subject: Re: [CMLHope] Re: Hi
Thanks and hats off to Marty and Millie. I realize I am
: ICANDOALLTTC icandoall...@aol.com
To: cmlhope cmlhope@googlegroups.com
Sent: Sun, Jul 21, 2013 9:47 am
Subject: Re: [CMLHope] Re: Hi..Susan's Life who did the doc recommend?
Hi Susan, Great uplifting story.
A question? Who did Dr Pinilla recommend to you?
Hang in there.
Blessing,
Jeanie3
,
Susan
-Original Message-
From: Richard H richard1huff...@comcast.net
To: cmlhope cmlhope@googlegroups.com
Sent: Sat, Jul 20, 2013 1:25 am
Subject: Re: [CMLHope] Re: Hi
You are spot on about having the right specialist. I am very fortunate to have
an ONC that is a specialist in CML
-
From: Richard H richard1huff...@comcast.net
To: cmlhope cmlhope@googlegroups.com
Sent: Sat, Jul 20, 2013 1:25 am
Subject: Re: [CMLHope] Re: Hi
You are spot on about having the right specialist. I am very fortunate to
have an ONC that is a specialist in CML and he has at least one other CML
, 2013 9:17 am
Subject: Re: [CMLHope] Re: Hi
Thanks all so very much for the encouragement. I think I've made my decision
about where to go, will contact Northwestern univ. on Monday to see a
specialist who was recommended by Dr. Pinilla from Moffitt Cancer Center in
Tampa (my former specialist
Hi Susan,
I'm glad that you are going to get some help with your issues. I know that
once you deal with them, it will make your life so much easier. I know that I
feel that dealing with my liver problem is so much better then not knowing and
worrying all of the time. We all face a lot of
Hi Beth, I'm trying to catch up on my e-mails now, and that's always a nice
thing to do as I get to read what everyone has written again. Sometimes, I
miss things in the first reading and when I go back, find out something new.
I know that you deal with more then most of usor different.
Hi MartyHope that you're having a wonderful day in Pennsylvania. I wish I
could get out, but today hasn't been wonderful. I'm dealing with a lot of
pain, and now have it under control, so will enjoy the rest of my day the best
way I can. I just wanted to touch base with you and tell you
Hi Susan,
Sure you may have your problems but the important thing is that you have
decided to try and do something about them. You are no different then
anyone else. Sometimes we just go through so much that we are terribly
frightened to do anything about them because anything that is of the
Message-
From: Marty Gartenberg wa2...@gmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Sat, Jul 20, 2013 4:38 pm
Subject: Re: [CMLHope] Re: Hi
Hi Susan,
Sure you may have your problems but the important thing is that you have
decided to try and do something about them. You
, 2013 6:14:10 PM
Subject: Re: [CMLHope] Re: Hi
Thanks and hats off to Marty and Millie. I realize I am no different, believe
me. You guys haven't heard much about my life, and maybe I won't bore you with
details today. But I do stay busy now doing the things I love. I just was
slightly
Hi Millie,
You want to know something? No matter what you are and have been going
through your still here and kicking. You Millie are just like that pink
ever-ready bunny. You just keep going and going. You ended your last
statement with *That's what we all do, so nothing new..!*
*
*
: [CMLHope] Re: Hi
Hi Millie,
You want to know something? No matter what you are and have been going through
your still here and kicking. You Millie are just like that pink ever-ready
bunny. You just keep going and going. You ended your last statement with That's
what we all do, so nothing new
~
Beth
-Original Message-
From: Susan Zimmerman rszim0...@aol.com
To: cmlhope cmlhope@googlegroups.com
Sent: Fri, Jul 19, 2013 6:48 am
Subject: Re: [CMLHope] Re: Hi
Hello all,
Thanks so much for the inspiration, Millie, Marty, Richard and Beth! You guys
are fantastic and I am
To: cmlhope cmlhope@googlegroups.com
Sent: Fri, Jul 19, 2013 11:18 am
Subject: Re: [CMLHope] Re: Hi
Dear Susan,
So sorry you are struggling. But I am so glad you are listening to the warning
sides of your body and paying attention. So often people override their own
knowing or their doctors
love ...Beth
-Original Message-
From: Susan Zimmerman rszi...@aol.com javascript:
To: cmlhope cml...@googlegroups.com javascript:
Sent: Fri, Jul 19, 2013 9:52 am
Subject: Re: [CMLHope] Re: Hi
Thanks so much, Beth!!! I'm getting on the phone this afternoon come hell
or high water
Sorry to hear about your new health challenge. I am adding you to my
special list for prayers. I wll be praying for this to be a bump in the
road and not a mountain to climb.
Richard H.
On Tuesday, July 16, 2013 9:59:14 AM UTC-5, millie wrote:
*Hello to everyone. I didn't get on here
Yaho, Yes, he is Italian and I love him also. He will love
you too. Tell him you know me.
Good luck,
Jeanie,3
In a message dated 7/20/2010 4:33:17 P.M. Pacific Daylight Time,
nadia...@earthlink.net writes:
Jeanie…..Thank you so much. I went to Moffit this morning and I see
make me feel good and proud to be part
of the CML Warriors. Merci. Nadia
From: cmlhope@googlegroups.com [mailto:cmlh...@googlegroups.com] On Behalf
Of C.M. Houtz
Sent: Monday, July 05, 2010 7:46 PM
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] Re: Hi Greenie
Hello Nadiia
Oh also, My cholesterol went way down on Gleevec.
In a message dated 6/25/2010 9:43:30 A.M. Pacific Daylight Time,
sheila.a.wat...@gmail.com writes:
I've not been getting anything either, Greenie. Like Martin says, you
probably just need to give it a good cleaning to get rid of some
Hi SusieQ,
If it works don't fix it; That is what my doctor told me hehe.
All the pills have some side effects, and I have been on all three so I
know.
I am at Moffitt Cancer Center now and I really like it although they were
doing BMA every three months. They put me to sleep so it wasn't so
Greenie:
If you want to live a little further up the coast line, my mom still
has her house in
Port Richey, Fl. It's north of Tampa off Hwy. 19. It's not far from
Hudson Beach, so that's
a plus. She still wants to sell it, if you're interested.
It's not on the market right now.
Sorry Greenie to hear this.but, you are right about some of these
doctors that act like they do not care.
Even after being on Gleevec since Feb. 2004, I still have a few
showing up each time. My doctor told me
that that was just the way it seems to be with me each time. Only
twice have my
Hi Greenie, We talked through e-mail a few years back I am from
DeMotte, IN and was diagnosed coming up in August 5 years ago. I used
to drive all the way to Mayo Clinic until a couple years ago Zavie
had mentioned Dr. Talpz at the University of Michigan, he is now my
doctor and is absolutely
Thanks for your reply Suziq
In a message dated 6/29/2010 9:11:07 A.M. Central Daylight Time,
sheila.a.wat...@gmail.com writes:
Sorry Greenie to hear this.but, you are right about some of these
doctors that act like they do not care.
Even after being on Gleevec since Feb. 2004, I
Hi Sheila, I remember the name. How could I forget, my X-wife's name is
Sheila. I have to stay with Northwestern because they are supplying me with
the drug for free. BUT, if things change I would like to have their phone
number. Thanks, Greenie
In a message dated 6/29/2010 10:19:32
Suzieq, it's always nice to hear from you. Thanks for the reply. Greenie
In a message dated 6/25/2010 11:43:32 A.M. Central Daylight Time,
sheila.a.wat...@gmail.com writes:
I've not been getting anything either, Greenie. Like Martin says, you
probably just need to give it a good
...@hotmail.com wrote:
how can I use facebook to read these emails?
--
From: Suzieq sheila.a.wat...@gmail.com
Sent: Friday, June 25, 2010 6:43 PM
To: CMLHope cmlhope@googlegroups.com
Subject: [CMLHope] Re: Hi group
I've not been getting anything
I've not been getting anything either, Greenie. Like Martin says, you
probably just need to give it a good cleaning to get rid of some
unwanted malware or trogan that you picked up somewhere. It's
easy to do that without realizing. I use to use Noadware which
cleaned off all the spyware cookies
@googlegroups.com
Sent: Tuesday, September 23, 2008 4:21 PM
Subject: [CMLHope] Re: Hi Millie, my onc just put me on Tasigna; need your
input
Hi Millie and thanks for the quick input.
I'm so happy you are doing good on Tasigna.
I am looking forward to feeling better also.
I am trying now
Hi Millie and thanks for the quick input.
I'm so happy you are doing good on Tasigna.
I am looking forward to feeling better also.
I am trying now to get the drug through my insurance; has to have
preapproval.
The onc gave me a 7 day starter kit.
Thanks again.
I am taking it at 5 AM and 5 PM.
Hi Jeanie.I was scared to death and didn't want to take it, mostly because
I do have a heart condition. At any rate, I had 3 EKG's in the first few weeks
and just had another one recently and they've been fine. My cardiologist knew
nothing about this Tasigna, but learned and is 100% for
Hi Suzzie, the same thing happened to me.
I took the med for the high potassium and was sick all weekend but all the
doctors were gone until Tues.
I hope your platelets will be good.
Blessings,
Jeanie3
In a message dated 8/31/2008 9:54:13 A.M. Pacific Daylight Time,
[EMAIL PROTECTED] writes:
] wrote:
From: [EMAIL PROTECTED] [EMAIL PROTECTED]
Subject: [CMLHope] Re: hi potassium in blood? to suzzie
To: CMLHope@googlegroups.com
Date: Friday, August 29, 2008, 10:16 AM
Hi Suzzie and so sorry to hear about your platelets.
Mine are just the opposite; too high.
The only time I had low platelets
PROTECTED] [EMAIL PROTECTED] wrote:
From: [EMAIL PROTECTED] [EMAIL PROTECTED]
Subject: [CMLHope] Re: hi potassium in blood? to suzzie
To: CMLHope@googlegroups.com
Date: Sunday, August 31, 2008, 2:34 PM
Hi Suzzie,
I live in central New Jersey my onc. is Dr. Stephen Young whom I have a
lot
Hi Suzzie and so sorry to hear about your platelets.
Mine are just the opposite; too high.
The only time I had low platelets was in the beginning and they took me off
all meds until they came back up. How are your WBC?
Are you going to Moffit?
I have been having a big problem with my
Hi Jeanie: We need to pray for each other. I am having a bad day too. My
Platelet count is dropping steadily month bymonth. My Oncologist never
picked-up on this, and I had to send him a Fax to show him the pattern. Now he
wants me to get more testing. I need someone who has had this
No, unfortunately I have consistently low blood potassium and
calcium.
On Aug 26, 11:14 am, [EMAIL PROTECTED] wrote:
Hi all,
I just found out I have high potassium counts in my blood.
My dr was concerned and called in a prescription.
Has anyone else had this?
Thanks and Blessings.
Also my
In a message dated 8/26/2008 6:42:54 P.M. Pacific Daylight Time,
[EMAIL PROTECTED] writes:
Hi I was wondering about that.
My PP is talking about putting me in the hospital for it.
I'm going to see my onc tomorrow and see what he says.
Thanks a lot,
Blessings
Jeanie3
You can read about excess
In a message dated 8/26/2008 8:28:31 A.M. Pacific Daylight Time,
[EMAIL PROTECTED] writes:
I only had a high potassium level when I followed an athlete's
recommendation and took a
potassium supplement to ease the muscle cramping caused by Gleevec. I only
took ONE pill a day, yet it really
You can read about excess potassium issues (also called Hyperkalemia)
at this link:
http://en.wikipedia.org/wiki/Hyperkalemia
Hyperkalemia can be associated with kidney issues, so you should ask
your doc to check for any kidney issues.
It can also occur when a person has high platelets, as you
I swear we have some amazing people in our group. The information that we
receive from this web-site is unreal. I myself have no idea what I would do
if Rob would have not started it. I get more information here then I could
ever get from any Doctor. Thank you Rob. You hate to call the
HAPPY BIRTHDAY ALL YOU MAY BABIES.
Good luck with your new meds Skip.
Blessings,
Jeanie3
In a message dated 5/9/2008 1:26:13 P.M. Eastern Daylight Time,
[EMAIL PROTECTED] writes:
Gosh my Birthday is in May as well the 30th..Happy
B'day to us May babies
now that I have a note going Zavie
In a message dated 5/9/2008 9:24:40 A.M. Eastern Daylight Time, I CAN DO ALL
TTC writes:
Hi Zavie and yes my birthday is in May.
I'll be 70; it has been a wonderful 70 years.
We are going to celebrate with a big dinner with all the family.
I was doing so good and then all of a sudden my blood
Gosh my Birthday is in May as well the 30th..Happy
B'day to us May babies
now that I have a note going Zavie suggested I tell
you all what is going on with me... As of today I
started Dasatinib.. at 100mg a day. My doctor said
(holding his Hand at approx the 6ft level) when I
first met you your
Sorry to hear about Vanessa. I was diagnosed in April of 04 and put on 400mg of gleevec and have been in remission for almost two years now. My blood counts go up and down but now stay within safe guidelines. As has been mentioned Gleevec can cause some side effects, but some people have them
Looks like you have gotten losts of responses already. I started out
on 400mg/daily or Gleevec. After 6 months, the dosage was up'd to
600mg/daily. My oncologist said that 600mg was the optimal dosage.
I wish you and your wife great success with Gleevec. It does have a
lot of side effects,
Steve,
I don't have much more to add than what everyone else has said. I was
diagnosed in June/06. I was put on Allopurinol for two weeks, and
started 400 mg of Gleevec a few days after the Allopurinol.
In the beginning I was a little more tired than usual, and experienced
some heartburn
Many of us who have CML do not have a normal blood count. Gleevec is
an outside regulator that cannot duplicate the internal regulators
perfectly, but it often gets close enough. You might call our blood
count status CML normal, because it is normal enough for a healthy
life, but would look odd
Thanks for the response Rob, we don t know that. Vanessa has another
Bone Marrow Biopsy in just over a week to check that
cheers
steve
--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
-
You
All
thank you so much for the responses so far, it is great to have an
opportunity to share with with people that truely understand.
thanks
Steve
--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
It is common for some blood counts (especially WBC and Platelets) to
oscillate a bit during the first few months on Gleevec. I assume your
wife is being tested every month at this stage, so you will be able to
track the blood counts. The initial dose of Gleevec, whether 400,
600, or 800, is
Welcome to the group.The higher doses of Gleevec have had good results. What percentage Philidelphia did she have?RobOn 7/8/06, Priesty
[EMAIL PROTECTED] wrote:
HiI'm Steve and my wife Vanessa was diagnosed with CML 4 weeks ago. Ifound CML Hope on the net last night and it looks like a
Hi Steve,I'm sorry to hear about Vaessa. I was diagnosed in Feb., 2003. To give you some simple answers. Yes, it is common to begin with 600 or 800 mg of Gleevec. The theory is that the quicker a patient achieves remission, the better the long term outcome. Most people take, on average, 18 months
Gayle,
Welcome. You will get lots of good information from this group. You did
not mention your Mother's age. Many people here have had good results on
Gleevec, including me. I have been on a trial since 1999 and have
continually decreasing counts of Ph+ cells. It is not a cure, but for
Thank you so much for your wishes for my mom. She is 73.
Gayle
--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
-
You received this message because you are subscribed to the Google Groups
Thank you for that information. This is going to be a big learning experience for our family.
Today they took the catheter out of her neck as her platelets seem to have stablilized at about 650,000 for the past two days, still too high but the medication seems to be kicking in.
Has anyone here
Thanks so much for your best wishes.
Gayle
--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
-
You received this message because you are subscribed to the Google Groups CMLHope group.
To
When my mom had her lung embolisms they never mentioned anything about high platelets.
Gayle
--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
-
You received this message because you are
Hi Rosie,
Like it has been said, welcome to the group that no one wants to join.
As my doctor said when I was diagnosed 2-13-02, you have won the
lottery. Problem is this is not the lottery you wanted to win.
I have that somewhat of a strange twist, I too work for a company that
makes
Renee,
Welcome to the zero club. I believe I am number 973. You did what
took me 3 plus years to achieve. Great job!!!
I would say the rerason your siblings have not been tested is that
Gleevec is doing such a great job. If you feel better know this
information then ask your doctor
Welcome, Rosie. to the club no one wants to join!A lot of good people here and a lot of good information, both scientific and anecdotal, to help you through. Do be shy about asking
anything, we've been through it all, when you look at us collectively. Richard Troxeldx 2/2003On 6/6/06, Rosie
Welcome to the group.RobOn 6/6/06, Rosie [EMAIL PROTECTED] wrote:
I not very good at this.I am 47 yrs and was just offically diagnosedlast Thursday. I started on Gleevec on Friday.I just went to the Drfor a yearly phyiscal and surprise my WBCs were out of the ballpark.
98% of my cell were positive
There are several new drugs BMS-354825 and AMN-107 are the two that are currently the best known.
BMS-354825 is dasatinib which has been shown in clinical trials to be more effective than Gleevec and has much fewer side effects. It is expected to be approved by FDA in the next 4 to 6 weeks and
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