Hi Marcie,
Sorry that you've had pneumonia, but glad that you're doing okay at present.
We are all experiences different things, and most aren't wonderful, but we're
still Alive, and that's what matters. Marty is not doing well. He's having
tests run as he needs to get back on the list for a kidney transplant and they
have to see if the rest of his body is doing well enough to consider one. I'm
not well either. My arms just don't want to work, and that is causing me a lot
of pain. I am experiencing so much muscle pain in my arms, but only from the
elbows up to the shoulders, across that shoulders and neck, and I try to get
past it all. I am living on pain medication, which I hate, but it is what it
is. Some how I'm going to come through it. Like I said, we all have our
issues, but try to go on like nothing is happening.
Were you affected by the floods/rain, etc. that they've had in the Baltimore
area. I think of you every time the news says how bad it was, or is.
Finally, it looks like Spring is arriving in PA. and I pray it will stay. We
all will feel a lot better when the cold days are over. I am heading to bed
now. I hope that you will feel better and can continue to write and do what is
making you happy. I always enjoy reading what you write, and am glad that
you're keeping up with the site.
Love, hugs, prayers, and lots of Marty's 18's..
Millie
----- Original Message -----
From: 'Marcie Goodman' via CMLHope
To: cmlhope@googlegroups.com
Sent: Thursday, May 15, 2014 11:47 PM
Subject: Re: [CMLHope] how much sprycel susan
So glad to hear that Marty is out of the hospital, Millie is doing her
knitting and cooking, Susan isn't experiencing side effects, Greenie's results
are excellent, Pat Elliott is taking charge of so many issues and Richard and
Jeanie seem to be upbeat. I remember that Beth was having a tough time and I
hope that she is feeling better.
I seem to have less time to stay up to date but I keep all of you in my
prayers. Just coming off a bout of pneumonia and back to work full time. My
boss is up for re-election and has a primary June 24th so it is stressful. Then
there is the general election November 4th. My husband and I both work by
political appointment and that ratchets up all kinds of anxiety, especially
because of the health care benefits which are excellent. My last BCR ABL was
undetected and I'm grateful that Gleevec continues to work for me.
Best wishes to all on this site for a happy and healthy spring. I hope others
who participate understand that I pray for each and every CMLer. Just know some
better than others but love to all.
Marcie
Sent from my iPad
On May 13, 2014, at 7:47 PM, "'Susan Zimmerman' via CMLHope"
<cmlhope@googlegroups.com> wrote:
Thanks Jeanie,
All your adventures finally paid off. I quit my onc locally because he had
never heard of bosutinib or posatinib, said I was mixed up on my medications.
That told me I was not getting the best care possible. Sure glad your nurse put
in a good word for you. We have to be pro-active! I wrote an e-mail to Dr.
Pinilla at Moffitt, my former onc. He told me to please go to a university,
whether it be Northwestern or Univ. of Michigan where he recommended docs at
both. So I went with the Chicago one, as it is a little closer. So far been
on 100 mg a day for a week now and no side effects yet. I do take it at
breakfast. Thanks for the well wishes from all about being able to tolerate
this last one!
Wishing you all the best of 18's and good health,
Susan
"Look among the nations and watch; be utterly astounded! For I will work a
work in your days which you would not believe, though it were told you." Hab.
1:5
-----Original Message-----
From: ICANDOALLTTC via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Tue, May 13, 2014 6:34 pm
Subject: [CMLHope] how much sprycel susan
Hi Susan and so good to hear from you. I remember I had to take my Gleevec
with a large meal so I planned large breakfast and it worked for me. When I
started on Sprycel I was in the hospital as my platelets and wbc had gone way
up. I was having my blood cleaned daily, but it would to right back up after
they cleansed it. My onc at the time had me on a high dose of Gleevec (which
had already quit working for me, and some other drugs. I kept asking him for
Sprycel, but he said he wasn't familiar with it. Finally a nurse came in
that had worked for Moffitt Cancer Center and asked me why I wasn't on Sprycel;
I told her and she must have talked to my onc because he came in and told me he
was putting me on Sprycel.
The hospital I was in acted like they couldn't get it so he gave my son a
prescription and he filled it at Walgreens. He started me on 150 mgs daily in
the beginning and sent me home.
After a few BMA I was put on 100 mgs daily and have been on that dose ever
since, and yes it put me in remission after only a few months.
I use to have the EKG quite often but never had a problem so we stopped
them. I do have them yearly.
I go to my onc now every 6 months, and so far so good.
Keep us informed on your journey with the new meds.
Blessings
Jeanie<3
In a message dated 5/8/2014 6:49:45 P.M. Eastern Daylight Time,
cmlhope@googlegroups.com writes:
Thanks Jeanie for your concern. I must take the med with food, which
will change my eating habits, as I usually skip breakfast. So now, a
breakfast, (which is good for me) with it, and no problems so far at all. With
only taking 1/5 of the regular dose, I shouldn't have any problems! I forgot
to tell you guys that the ekg showed abnormality of my heart, (prolongation).
I'm just a little over the designated normal count, but over nonetheless. Now
they must do an ekg every time I go to make sure it doesn't change. (ugh) Did
the sprycel put you in remission on the 100 mg a day? What was your dosage and
what is it now? I hope my numbers will go down without increasing the dose.
18's,
Susan F. Zimmerman
-----Original Message-----
From: ICANDOALLTTC via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Thu, May 8, 2014 6:19 pm
Subject: Re: [CMLHope] No Updates?
Hi Susan, please let us know how you do on this new meds. I am on
Sprycel and I remember when I started on it they put me on 3 50mgs pills. It
wasn't long before they downed it to 2 pills daily. Do you have to take it
with water or food?
Sprycel put me in remission and was the first drug to do so; I was on
Gleevec and Tasi.
My prayers are with you on your journey.
Blessings,
Jeanie<3
In a message dated 5/7/2014 9:50:52 P.M. Eastern Daylight Time,
cmlhope@googlegroups.com writes:
Hey everyone,
I started on bosutinib yesterday at 100 mg. Please keep me in your
prayers that this medicine will work and I can stay on it without any stroke
symptoms, like has happened with all the rest of the drugs. I am going to
Chicago (Northwestern) at least once a month now, next again for a two-week
follow-up. It's a one hour and forty minute drive with no slow-downs. I make
it a fun day. Last Wednesday my husband made it a business trip and took me
along, dropped me off and met again later. It's easier on my nerves when
driving downtown! Dr. Altman wants to check my reaction to the lowest dose in
two weeks. I'm sure it will be fine......
They also did an EKG on me and it showed that I do have prolongation
between heartbeats, just a tad above normal. This could be why I'm so
devastatingly tired all the time! I do not want to develop anything worse from
the prolongation, so they will give me an EKG each time I go for awhile. Got
to do some homework on this. Sure have loved and enjoyed being off all
medication for 7 whole years. Dr. Altman says I'm really "special" to have
lasted this long. Don't know by that if she means "crazy" or idiotic, or
what....it is what it is!
Marty, I am standing with everyone to pray you will receive a new
kidney soon...and Millie, keep pressing the docs about why all these pains are
gripping you and what can they do about it. We have to be pro-active, although
I know just getting through the day sometimes is all the "pro-active" we can
be!!! Beth, praying for you, too!
18's and hang in there,
Susan Zimmerman
-----Original Message-----
From: C.M. Houtz <ho...@ptd.net>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Tue, May 6, 2014 11:54 pm
Subject: Re: [CMLHope] No Updates?
Hi Richard,
I've been thinking the same thing. I hope that it means all if okay.
I have been having a lot of Arthritis problems and can hardly move my arms. It
hurts to type a lot. from the elbow down I'm fine, but from the elbow up it's
so painful to lift my arms or do anything that requires reaching, lifting, etc.
What a mess I am.. I try to cope with it, and do some exercises that help, but
if it hurts to do them, they tell me not to force it.. Say prayers for Marty,
and Beth as I know they're having their own set of problems. If you have any
left over, pray that my arms will start working well enough for me to
accomplish something. Marty has a weeks worth of tests, doctors, etc. to deal
with, and Debbie has her back issues. I know that this is a CML site, but it
seems like other things get in the way that we deal with. I do hope all is
well with you. I'll keep watching for e-mails from the group, and hope that
they will all be good news. Jeanie got kicked off of the Goggle site, and I
can't remember why. She was trying to change things and it took her down. I
don't think she knows how to get back on. I still e-mail her and we talk that
way, but she was a huge asset to our group. I forward her messages to you
guys, but she needs to get hooked up directly. I sure don't want to loose
touch with anyone.
Talk to you soon.
Love, Hope, and Prayers,
Millie
----- Original Message -----
From: Richard H
To: cmlhope@googlegroups.com
Sent: Tuesday, May 06, 2014 11:40 PM
Subject: [CMLHope] No Updates?
I haven't seen any new or responses for almost a week. I hope
everyone is okay and just busy with life.
Richard H.
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