Jeannie,
Just letting you know I am thinking of you today. feel so badly you feel so
horrible. Praying it eases and you feel better soon. Fondly, Beth
-----Original Message-----
From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Sun, Jan 11, 2015 8:33 am
Subject: Re: [CMLHope] Jeanie's relapse
Hi Marty.
I feel so bad today!!!
Thinks it's from the hydrea.
I will print that out and keep it close.
I love psalms also.
Keep praying.
Jeanie 18's
Sent from my iPhone
On Jan 11, 2015, at 8:05 AM, Marty Gartenberg <wa2...@gmail.com> wrote:
Jeanie, I know that your feeling low right now but things will work out for
you. You must have this in your heart and I know that you do. FOCUS.
This was something that was given to me by one of my close friends when I had
to live in that plastic bubble for all of those many months. I would read it
all the time and I am now passing it on to you, and it is being sent to you
from my heart because I remember my doubts but then again I also remember my
strengths.
EXPECT THEBEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. TO
HAVESUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF YOU
EXPECTTHE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER MATTER) IF
YOUEXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.
WHAT WE HAVETO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF MIND.
LEARN TOEXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING INTO THE
REALM OFPOSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU THOUGHT TO BE
IMPOSSIBLETHEN MOVES INTO THE AREA OF POSSIBILITY.
EVERY GREATTHING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE
BEGINNING OF ADOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE SUCCESSFUL
OUTCOME...
FOCUS...
Yes Jeanie you just keep on focusing because you are much more powerful then
you think.
Now you know why I keep on sending 18's.
18's,
Marty
On Sat, Jan 10, 2015 at 10:38 AM, 'Icandoallttc' via CMLHope
<cmlhope@googlegroups.com> wrote:
Hi Marty
Thanks for you uplifting message.
I am back to square one with my counts--
700 thousand platelets
163.28 WBC
ANC high
Creatine high
Potassium high
Took me off sprycel.
Allipurinoll 2 pills
Hydrea 3 twice a day
Yes I will fight!!!
Just so tired.
I think dr will put me on new drug mon.
Got to see if there is a mutant.
Prays and love to all.
18's. <emoji_u1f41f.png>
Jeanie
Sent from my iPhone
On Jan 10, 2015, at 4:31 AM, sherri swanson <swanson.sherri...@gmail.com> wrote:
Hi Richard,
If it's one thing I got, It's Attitude! At least that's what my mom would tell
me when I was a teenager. LOL
Sorry to hear about the car. This cold weather can be brutal on a car's
battery. Glad you were able to get a new and now you’re good to go.
Uor wind chills have been bad too. And we have some open fields so there is
nothing to block that wind. The other morning it was so cold that the water
froze in our community and none of had any water for awhile. It's a good thing
I'm an early raiser and I took my shower while we had water.
Currently, it is -7 with a wind chill of -25 where I live and it isn't going to
be above zero until 9 am. That's cold.
Stay warm Richard and think spring!
L'chaim,
Sherri
On Fri, Jan 9, 2015 at 11:29 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
Hi Jeanie,
So many things effect your kidneys. The simple ageing factor is just one of
them. Some medicines will also contribute to kidney function probably some of
these TKI's. Mine finally gave out from all of the chemotherapy and radiation I
had more then 25 years ago.
I can make a suggestion: If you are not diabetic try drinking cranberry juice.
Not the ones that are mixed up with juices like grape juice. Ocean Spray has
pure cranberry juice so you might want to try it. Even if you are diabetic they
also make a light cranberry juice.
You know what? You have been through so much that this is only a bump in the
road for you, and so it is for me.
We have two choices. One, continue to fight and the other is not an option for
me or you.
That is why I always end any of my posts with 18's. You just hang in there
sweetie.
Marty
On Fri, Jan 9, 2015 at 7:55 AM, ICANDOALLTTC via CMLHope
<cmlhope@googlegroups.com> wrote:
Hi Sherri,
I think the tki's contribute to kidney disease. I think that I am in the
beginning of the disease and I have been on tki's for 11 years now.
Hang in in there; blessings
Jeanie<3
In a message dated 1/9/2015 3:21:09 A.M. Eastern Standard Time,
swanson.sherri...@gmail.com writes:
Hi Marty,
Thanks for the prayers and right back at ya.
I've been struggling with my kidney disease for many years and didn't know
it, and then one day voilà the doctors found that there was a problem and
that I'd been fighting it for years hence the diagnoses of Chronic Kidney
Disease. And the funny thing is, I'm the only one in my entire family that
has any of these diseases. My family had its share of health issues from
heart disease to diabetes. But never anything like what I have. All my
doctors just shake their heads. I tell them that I like to keep things
interesting. And what they like is that I have a sense of humor. And at this
point, it is much better to joke and laugh than to worry and cry. While I
still take what I have seriously, I'm just happy to be here.
I would be a lot happier if the weather here would warm up. For crying out
loud it was -5 here yesterday and I was out in it. Now that is one hearty
person or a very foolish one. The jury is still out on that one. Today it is
going to be a balmy 8. Woohoo! A heat wave. And, again I'll be out in it as
I have to go and get a Rx that I need.
L'chaim,
Sherri
On Thu, Jan 8, 2015 at 10:40 PM, Marty Gartenberg <wa2...@gmail.com> wrote:
Dear Sherri,
Yes, you are a fighter and it takes one to know one. I pray that everything
turns out well for you.
And you are correct that all of the radiation and chemotherapy did destroy
both of my kidneys. It has been over 25 years that I had my BMT. It took
many years for my kidneys to fail and that is probably why most transplant
centers will usually not use total body radiation any more unless it is
really needed.
18's,
Marty
On Thu, Jan 8, 2015 at 1:31 PM, sherri swanson <swanson.sherri...@gmail.com>
wrote:
Hi Marty,
The doctors are trying to treat the different illnesses that are included
in my condition. There are so many and they do so many different things,
that I am happy just to to be here. I agree that as we get older there
are some unusual things that that find us. But in the long run, we all
got something. I'm a survivor. It's what I do. So when I found out on
Monday that I have a large mass on my thyroid, I told my doctor I guess
we're going to be busy this winter. At least I'm not an alarmist.
<35C.png>
I too have trouble with my kidneys. Not to the extend that you do, I'm
working to keep myself at the current level of stage III Kidney Disease.
Some days, I'm good others, not so much. Lately I've not been doing so
good and I've had to go and buy new shoes as my feet have been so swollen
that my current size no longer fit. I wear compression socks all the time
as well.
My Nephrologist ran some blood work and found that my sodium was very low
and and so was a bunch of other levels. Now, he is an alarmist. If I even
look like I'm getting a cold he freaks out. I love him dearly, and I do
what he says, but I can't sneeze without him making me go see my GP or
the Oncologist or whatever doctor he thinks I need to see.
I've heard that when you have a BMT and have to have radiation and chemo,
sometimes kidney failure is possible. How long have you been on the list
for transplant?
Well, I'm glad that you are here and that you are strong. You're an
inspiration to all of us. Thanks for all you do Marty.
L'chaim
Sherri
On Thu, Jan 8, 2015 at 10:07 AM, Marty Gartenberg <wa2...@gmail.com>
wrote:
Hi again Sherri,
Hopefully you will be able to be treated for this condition. It seems
that as most of us get older we start suffering from some very unusual
things, but that is the price we must pay to remain alive. We just have
to do whatever we can to keep on going because we have no other choice.
My kidneys failed four years ago and I must be on dialysis because it
is keeping me alive until I can hopefully receive a kidney transplant.
This happened because when I received a bone marrow transplant more
then 25 years all of the radiation and chemotherapy started to destroy
my kidneys, but i'm still alive today because of it. We all have our own
battles in life and that is just the way it is.
I wish you much health and happiness in this New Year.
18's,
Marty
On Thu, Jan 8, 2015 at 5:19 AM, sherri swanson
<swanson.sherri...@gmail.com> wrote:
Hi Marty,
Happy New Year. I hope you are well. Thanks for the research I
enjoyed article. I could only wish it was as simple as being as side
effect of my TKI. In my case, nothing is ever simple LOL. What I
have is called Autonomic Neuropathy. Basically, my Autonomic Nervous
System has malfunctioned. Here is a link for you to read if you
would like to.
http://en.wikipedia.org/wiki/Dysautonomia
In a nutshell, Autonomic Neuropathy is a nerve disorder that affects
involuntary body functions, including heart rate, blood pressure,
perspiration and digestion.
It isn't a specific disease. Autonomic Neuropathy refers to damage to
the autonomic nerves. This damage disrupts signals between the brain
and portions of the autonomic nervous system, such as the heart,
blood vessels and sweat glands. This can cause decreased or abnormal
performance of one or more involuntary body functions.
Autonomic Neuropathy can be a complication of a number of diseases
and conditions. And some medications can cause autonomic neuropathy
as a side effect. Signs, symptoms and treatment of autonomic
neuropathy vary depending on the cause, and on which nerves are
affected.
L'Chaim,
Sherri
On Wed, Jan 7, 2015 at 7:02 PM, Marty Gartenberg <wa2...@gmail.com>
wrote:
Hi Sherri,
I did a little research on your no sweating problem, and it is
probably a side effect of your TKI treatment.
I also ran across an article which you can read here. It does
mention something about the lack of sweating. It probably has
nothing to do with your problem but maybe you should read it anyway.
http://en.wikipedia.org/wiki/Fabry_disease
18's,
Marty
On Wed, Jan 7, 2015 at 5:29 AM, sherri swanson
<swanson.sherri...@gmail.com> wrote:
Hello,
I've had CML for 12 years and I've taken Gleevec for those 12
years. I've also experienced night sweats for many years. At
first I was told that it was due to menopause because of my age
at the time. Go figure. When that was no longer an option, the
only thing left was the Gleevec. Since being dx'd with the CML in
2003, I've been dx'd with other chronic illnesses that are just
as serious.
With these new illnesses came a new problem. I no longer sweat at
all. So now I have the complete opposite problem. No matter how
hot it is, I never sweat. I a way, it's nice because I'm always
cold and I long for very hot days so I can go out side in the
heat. But my oncologist has warned me to not do it for very long
as I have no way to control my body temperature. Unfortunately,
it works the same way with the cold. My body temperature is a
constant 95 degrees.
So, in answer to your question, yes, the Gleevec does cause night
sweats. It is one of its side effects. Unfortunately, I was not
able to find a remedy for my night sweats other than going to the
extreme which I do not recommend. <332.png>
I hope everyone has a good New Year and is healthy. Keep my
posted as to what you find out. Even thought I no long have this
issue, I would still like to be kept in the loop.
L'chaim
Sherri
On Tue, Jan 6, 2015 at 4:19 PM, 'Marcie Goodman' via CMLHope
<cmlhope@googlegroups.com> wrote:
Hello, Susan. Gosh, we are just sweating through this it seems.
I will see what may be available naturally, as I don't want
hormones either. Sorry you are experiencing this same problem
which I hope to solve.
Best wishes to you, Roy and your beautiful family for a blessed
New Year.
Marcie
Sent from my iPad
On Jan 5, 2015, at 10:17 PM, "'Susan Zimmerman' via CMLHope"
<cmlhope@googlegroups.com> wrote:
Dear Marcie,
I have had night sweats for years, intensifying after my dx
in 2005. I have day sweats, too. When I stand up for more
than five minutes to do anything at all I start profusely
sweating from weakness. I think part of this is from the
bosulif, but most is from the stroke weakness and need for
hormones. I will not take artificial hormones and have not
gotten the good kind that are specially made for each person.
I totally sympathize with you Marcie. You might want to go
to a naturalist doctor about getting a test for hormones and
then they will make a compound for you of cream that usually
works. Regular md's only know to prescribe the synthetic or
horse hormones which do cause cancer. That's my take on it,
hope you find some relief!!!
Thanks for your always uplifting posts! Happy New Year to
you, too!
Susan F. Zimmerman
-----Original Message-----
From: 'Marcie Goodman' via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Mon, Jan 5, 2015 8:41 am
Subject: [CMLHope] Night Sweats
Happy New Year, dear friends. I'm wondering if any of you suffer with night
sweats as a side effect of your TKI. I do, and have, over the years of my
treatment. I don't know that it is happening more frequently but the sweats
seem
to be more intense. Is there anything that you know of that will help?
Many thanks for always being there to offer encouragement and assistance.
Marcie
Sent from my iPad
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