Hi Millie and Marcie,
I remember all those symptoms very clearly, and I was on 400 mg always for two
years. I do hope you can reduce to 400, Marcie. It will be so much better for
the side effects.
Right now my short-term memory is still shot. I was with my two sisters last
night and they have to finish so many sentences for me when i can't think of
the word I want. I also am 61, Marcie, and it is frustrating. Now I do NOT
know what to do about this tasigna thing going on. I wondered if anyone saw my
post since only one answered. I was on it 15 days and my eyes crossed again
and numbness in my right hand (the left is always numb anyway from the previous
stroke). So doc said go off for one week. What am I to do? After one week I
am supposed to go back on it and risk another stroke. It's really a dilemma,
and scary, because I want to be back on the medicine and getting back toward
remission. I feel this is the time to really attack the cml with a vengeance,
but ..... Any thoughts? I can't stay off it forever, and tasigna was supposed
to be my best bet about bleeding in the brain. Does anybody know much about
bosutinib or the ponatinib? I don't.... I will do research on them, but from
reading these posts, seems many have been unable to have bosutinib work for
them at all. Don't know if ponatinib is even approved yet.
It is really comforting to know we can air our problems on here and talk about
them. In the past six years, without being on meds I really haven't needed to
do that too much. Now I ask for some guidance, as I need this medicine but I
don't need a stroke along with it! If it would happen, I pray God just takes
me instead of leaving me drooling and cross-eyed. ugh!!!
Thanks again mighty warriors,
18's,
Susan
-----Original Message-----
From: margood18 <margoo...@aol.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Sat, Jul 13, 2013 9:10 am
Subject: Re: [CMLHope]
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 <cmlhope@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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