Thank you Richard. I appreciate your honesty. I am trying to be positive and
live by healthy habits...the exercise piece is hard with these meds, I am
trying to find a way to be physically active in spite of the fatigue because I
know it's better for me to be active than not, even with the elevated CPK
stuff. I have the same boomerang you do where if I do exercise, feel worse the
next day. I am hoping to try and build some stamina slowly over time and see if
I can bring my body into some kind of balance...for me, I waas an exerciser
before being injured and then getting CML.... . We all do the best we can.. I
admire you for the mountain you climbed- sounds like you changed your life for
the better in a huge way... take good care. Beth
-----Original Message-----
From: Richard H <richard1huff...@comcast.net>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Thu, Jul 18, 2013 9:46 pm
Subject: Re: [CMLHope]
My diet is supposed to be basically heart and also diebetic. I am not as
strict as I should be but that is the base of the family menu planning (my wife
as the same dietary restrictions. The over the counter supplements I take are
for a multitude of other family inheriated problems. Somehow over the last 21
years health issues I was able put all my stress down beside the bed and sleep
beside it. If it is beyond my control all my nashing of teeth, losing my
temper, or fussing and blaming others won't do anytthing but raise my blood
pressure and create enenies. I will admit that was a hugh mountain to climb
and still causes problems try to tell an issue. I do not excerise as all my
doctors want me too. I have had low energy for so many years that when I do
try I wear down too quickly and take too long to recover. This is a lifelong
problem and one reason I chose sitting at a desk to earn a living.
Richard H.
On Sunday, July 14, 2013 11:27:09 PM UTC-5, Beth wrote:
Great news Richard..it's o.k.! l am sorry too because, I was thinking you had
been off meds for a long time, I remember you sharing that with us and me
thinking it gives me hope for one day down the road .........anyway. great
news your numbers are back down...staying low and off meds......that's fabulous
....if we don't need to be totally undetectable, but it stays low without any
intervention....that's gold!!!! Do you eat certain things? supplements? manage
stress or exercise daily???just curious.....
if you ansered this before, then forgive me...brain no longer that steel
trap... Take good care, Beth
-----Original Message-----
From: Richard H <richard...@comcast.net>
To: cmlhope <cml...@googlegroups.com>
Sent: Sun, Jul 14, 2013 9:47 pm
Subject: Re: [CMLHope]
Sorry abouy my twisted mind. I have been off 400mg Gleevec for 5 years and
hoping my christmas present will be to continue to 6 years. I am detectable
but the low. I had my first scare in April when the reading spiked to 9.475%
(Gleevec starts when we see 10%) and the retest dropped back to 4.57% in June.
Dr. said your guess is as mine as to why, do you want to test in 3, 6, or 8
months.
Richard H.
On Saturday, July 13, 2013 11:28:58 PM UTC-5, Beth wrote:
Dear Richard,
I hope you can go down to 400 too! And as for the steel trap comment...it's
nice to know ther eare some kindred spirits out there...let us know what the
verdict is about lowering your dose! Have a good weekend, Beth
-----Original Message-----
From: Richard H <richard...@comcast.net>
To: cmlhope <cml...@googlegroups.com>
Sent: Sat, Jul 13, 2013 10:11 pm
Subject: Re: [CMLHope]
I love to use this statement "I had a mind like a steel trap" when I speak of
my memory loss. I now add "and now it make a good strainer". I hope tou get
a chance to go down to 400mg Gleevec.
Richard H.
On Saturday, July 13, 2013 8:10:09 AM UTC-5, caselmar wrote:
Hi Millie:
I've lost a lot of eyelashes and brows, too. Even have done false lashes when
I had a wedding to go to. Part of the problem I see with people is that almost
everyone knows someone who has had cancer. Most of those patients either had
infused chemo and/or radiation. So they were bad but a point came where they
recovered and life went on. For us, at least for me, there is no chance in the
near future that I'll be off of Gleevec. Our problems and side effects often
take time to occur, memory loss is one for me.
I had a mind like a steel trap. Now, I can remember long term things but short
term is going faster than a speeding bullet. People who don't get it tell me
it is normal at my age to start losing your memory. I know that as you age
your memory may worsen but at 61, I don't think so. Plus, I can tell it is a
rapid increase in what I am forgetting.
My bone pain and muscle cramps are very severe, and naturally the fatigue is
far worse. I wonder if one day sooner rather than later I'll be in a
wheelchair or on a walker. Sometimes I can't zip up a dress or coat, even if
it is front zip. If it is a back zip, forget it. My husband needs to be here
to help with that. I can't hook bracelets or necklaces. None of this is major
because I'm so grateful to be alive. But it is still a quality of life issue.
I tend to have bad Gleevec stomach. I try to stay away from foods that trigger
it. But being from Maryland, I love steamed crabs. I eat them but somewhere
within a 15 minute drive to my house so I can use my own bathroom when the
diarrhea hits. There is no spontaneous planning because I always have to look
at how far I'll be from home because of this.
That's the kind of stuff I'm talking about that people don't get. They see me
and think, well she works, she looks pretty good for someone with leukemia,
must not be too bad. And for the most part, they are correct. I have a
positive attitude and feel very blessed to have an illness that is manageable.
CML has made me appreciate every single day.
Hope your results from the biopsy come in quickly. I know my bone marrow
results came in yesterday but my onc didn't call. He and I have a wonderful
relationship so I'm assuming that he just didn't get a chance to look them
over. He is one of the team doctors for the Baltimore Orioles and he may have
been at the game yesterday. Normally I don't worry about the results but he
has agreed that if they are good, he's going to try and take me down from 600
mg of Gleevec to 400 for a trial period of 3 months. Hoping that will help
with the side effects. If not, I'll just deal with it.
Best of luck, have a great weekend, and I think you are a wonderful person and
terrific friend!
Marcie
-----Original Message-----
From: C.M. Houtz <ho...@ptd.net>
To: cmlhope <cml...@googlegroups.com>
Sent: Fri, Jul 12, 2013 10:08 pm
Subject: Re: [CMLHope]
Hi Marcie
I also wear a wig when I go out, and at times around the house, but
don't cook with one, and, usually, don't wear one around close friends. My
hair is a mass of fuzz and I do have a gal that comes to my house and trims it
every 6 weeks, but there isn't much to take off...Mostly in the back. My
eyelashes are gone, and my eyebrows thinning a lot. No, most people don't
understand how we feel, and on here, we can share these things. I have a
friend....who told me once that if I'd take long walks it would be good for me.
Well, I'm sure that it would, and I would love to be doing that, but my legs
won't , so I'm stuck in my jazzy (elec chair) most of the time. I still can
manage some with a walker, but it's getting to the point where I have to have a
transport chair...and someone to push it when I go out. That makes it
difficult for me to attend things with my friends, etc. My arms don't work
well either...about the same as my legs. I can't lift my arms, especially the
left one without a lot of pain. I do what I can do, but, unless you have these
health issues, you don't understand that it isn't something that we choose to
have. My friend meant well, but just doesn't get it. Most of my very dear
close friends have suffered from some type of Cancer. They understand much
better. I love turbans, but have trouble putting them on and keeping them on.
I think they look neat. I wouldn't wear them out, but around the house I
would. I've never tried to bake with my wig on, but will think about it now
that you've warned me. Mostly, I just laugh at how I look as I can't do much
about it. Tasigna has left my skin so dry and wearing makeup just doesn't
work. Oh well, it is what it is.....right? We just do the best that we can.
My oncologist is going to be upset as I didn't get the results of the biopsy
yet and I must see him on Monday. He's such a love, and would hate to ever
change doctors. You don't find doctors that call you when they need to talk to
you (they have their staff do that), but since all of this liver stuff has
come up, he calls me often. I also can call him and actually get to talk to
him. I am truly a lucky lady.
You take care of yourself, and I'm so glad that we can share things with one
another.
Many hugs,
Millie
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