Hi Greenie. I had a flu shot about a month ago and had problem at all. I am
on Tasigna, but had them for years on Gleevec without a problem. Hope this
helps, but know that we're all different and react different to things. Hang
in there.
Millie
Thanks for your thoughts about our election. I for one am very happy with the
outcome and pray that things will start to fall in place and that life will
improve for all of us. Hope all is well with your son.
God bless you too,
Millie
--~--~-~--~~~---~--~~
Hi Vivi,
I have had several eye bleeds. Only found out that it was from the medication
a short while ago from reading the CML Hope messages. My family doctor didn't
even know, and I don't even know that I mentioned it to my Oncologist. Every
time it happened they sent me to the eye doctor,
I have had cramps in my legs and my hands for years and I just thought it was
low potassiumor my Arthritis. I still don't know what causes it. Since
I've been on Tasigna the leg cramps are gone, but still have times when my
hands actually look deformed and twisted. I usually put heat on
Glad that you're doing so well. I wish I'd go into remission, but I haven't
given up. I come close, but close doesn't count. :))) Have a wonderful
Christmas and a Happy New Year...Millie
--~--~-~--~~~---~--~~
[CMLHope]
A support group of
Hi Kelly,
I am not sure if I can help, but there are two things I can think of right
now. One is to contact the American Cancer Society and ask for help, and
the other is to contact your Oncologist (by phone) and ask if there's a way
to get your medication without paying for it. I know
Hi Greenie,
I was on capsules and then was switched to the pill form, and never noticed any
difference. I had side effects with both of them, and didn't notice any new
ones or different ones, and they were a lot. I'm now on Tasigna, and am doing
much better so far and I've been on it for 6
That's wonderful news. I will keep you in my prayers. God is taking good
care of you. Millie
--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
-
You received this message because you are
Hi Greenie...I will keep Grace in my prayers. I hope that you will get the
help for her that you need. I know what you're going through...in a way. I
had a call from my doctors office telling me that my blood sugar was way to
high and the Doctor needed to see me a.s.a.pThey made an appt.
Hi Greenie and GraceI hope that you only get good news. I will continue to
pray that all goes well for the two of you. Thanks for keeping us up on
things. God Bless you bothMillie
- Original Message -
From: myvet...@aol.com
To: CMLHope@googlegroups.com
Sent:
I get stuck about every six weeks and it isn't fun as they can only use one of
my arms, and that isn't doing so well. It's been stuck way to many times in
the past 15 years. I have a wonderful lab tech, Jake, and he usually finds
something. He says I'm wonderful as I don't complain. It
I'm laughing, Jeanie. By now you should know that I pay little attention, but
I'll ask Jake on Friday and will get back to you with the answer. I really
don't know, but think it's the PCR. I know that he wanted me on Tasi for 6
months before running it.
I'll get back to you.
God Bless us
Hi JodyIt is devastating to have a child with any disease, but there is
lots of hope with CML. There are many drugs out there and other options, so
I pray that one will work for him. I'm 69 and have been fighting this for
10 years. I am on one of the new drugs (Tasigna), and so far so
for 2 years and I had
forgot about that and the first thing she said was where's my jokes from the
readers digest. It makes it less painful to me when I am distracted.
Suzan
--- On Wed, 2/25/09, C.M. Houtz ho...@ptd.net wrote:
From: C.M. Houtz ho...@ptd.net
OV cancer. They will do surgery this coming
Thursday morning. I will do my best to keep you all informed. I'm using my
step sons lap top.
Greenie
-Original Message-
From: C.M. Houtz ho...@ptd.net
To: CMLHope@googlegroups.com
Sent: Wed, 25 Feb 2009 4:54 pm
Subject
Hi Greenie and Grace.What wonderful news. I am so happy for you both.
Yes, Doctors do make mistakes. I can remember 1 year when they kept me coming
back for mammograms because the doctor (radiologist) was reading them wrong. I
finally went to another hospital and I was fine. Since I've
Hi KellyI'm so glad that you've found help. I can only imagine the
panic I'd feel if I couldn't get my drugswhich are many :)You hang
in there and keep us up on what's happening with you. You're in my prayers
and will continue to be. Millie
- Original Message -
From:
Hi Barb. I do have a few questions. Maybe they're already on your list. I
am on Tasigna for over 6 mo. Before that on Gleevec and Hydroxeria before
that...and Interferion before that. I have had various side effects with
each. My questions are
(I)..I don't digest things as fast as
Hi Suzieq.I know how frustrating it can be to need medication and not
have itespecially when it's keeping you alive. I sure hope that doesn't
happen again. Can't you get it locally at the drug store in an emergency?
I know that I send for most of my meds, but can also use the local
Hi SuzieQ, I found that eating anything with tomatoes in it made me sick.
Hope that this helps. I think that we all have different reactions to these
drugs. I don't have this problem on Tasigna, so figure it was something to do
with the Gleevec. I had to figure this out for myself. Good
Hi...Just wanted to tell you how much I enjoy your photos. I love flowers
and these are spectacular. Thanks for your effort to brighten our
daysMillie
- Original Message -
From: Zavie Miller zmil...@sympatico.ca
To: c...@yahoogroups.com; CMLHope@googlegroups.com
Sent: Tuesday,
Hi Rick.I think that most people have some side effects from gleevec. I
was on it for a few years, but didn't experience most of the ones that
you've mentioned. I'm a 70 year old female who has had this CML for almost
10 years and have been on all of the drugs available. Gleevec has
Hi Sandra.I was on Gleevec for a long time and for the most part had muscle
cramps in my legs and feet, also in my hands. At times these were very bad. I
took pain medication and also would put moist heat on my hands to make them
work again. They would actually freeze in odd positions
Hi again, Sandy,
After reading the e-mail from Gay, I thought that I'd send you another. I have
been on Potassium for years and so that may be why I was not getting the cramps
in other areas.My Potassium has been low. I take 2 of the pills each day.
I am on a water pill, and assumed it
Hi Lori.I'm so happy for you and your husband. I am glad that all went
well and you now have a beautiful little girl. You take good care of
yourself and keep in touch with the group. I know that we've all been
waiting to hear about her and she's such a precious baby. The 10th of May
Dear Rob and LaquitaI am so sorry for your loss. You have done so much for
all of us and without your effort, some of us would not know how to handle a
lot of things. Just know that many people are thinking of you both.
Millie
- Original Message -
From: Rob
To:
Hi Julie.What a wonderful message of hopeI haven't been on here for
long and didn't know Rachel's story, but am so happy that things are working
out for her. She sounds like a wonderful young woman. I hope that her life
goes the way she's planned and that she gets to work with
Thank you for what you've said..I do agree with you completely. I think
what's happening is so misunderstood. Millie
- Original Message -
From: patrick patrickemailguard-g...@yahoo.com
To: CMLHope CMLHope@googlegroups.com
Sent: Monday, June 15, 2009 4:01 PM
Subject: [CMLHope] Re:
Hi Sandy,
The Tasigna stopped working for Jeanie and they put her on Hydroxeria (sp)
along with the Tasigna, and her blood test numbers were still rising. The
doctor put her back on Gleevec (800 mg) and that was the last I heard from her.
I'm so concerned about her and how she's doing.
Hi SandyI never did get over the side effects that I had on Gleevec. Most
Onc. don't believe the possible side effectsor so I've found. I had
diarrhea really bad on the Gleevec and found that different foods triggered
that, so with staying away from the foods and being on meds for it,
Hi Greenie.I'm sorry that you're feeling so bad. Wish there was something
I could say to make it better, but know that doesn't work. Just know that you
are being thought of and will keep you in my prayers. Let us know what the
doctors sayBlessings, Millie
Hi JeanieSo far they've paid for mine. This came up a while ago on this
site, and I believe that they still do pay for it. I'll find out
soon.Millie
--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
Hi Greenie.I'm so sorry that you're not feeling well and hope that you can
get into see someone soon. Jeanie gave some good advice. Try the ensure and
yogurt. It really does help. I will keep you on my personal prayer list. You
take care and let us know what's happening. We have
Hi Suzieq.I wish you good luck with your doctor visit. I'm now going
every 3 months and that's good for me. I just saw my Onc. and everything is
going well on Tasigna. I see him in another 3 moand I feel that's a
blessing.
Let us know how your visit goes. I'm sure it will be
Hi ThereGlad you found the group again. I have it in my address book, so
if you put it in there, we won't get lost again. I do hope that you're doing
well and will continue to get on line with this CML group. I'm Millie and I
haven't been on to longprobably close to a year. I was on
I'm not sure if I'll take the swine flu shot. It's a thought and something
to ask my doctors. It's a little frightening, but with everything else we
have to deal withnot so much I intend to check and see what they
think, and I'll get back to you. You reminded me to call and set up my
Hi Suzzie The pneumonia shot is given every 5 years. I have them. I also
take the regular flu shot every year. The swine flu shot is separate, and
I'm going to ask my doctor about taking it. I'll post her remarks once I do
this. Hope that I've answered your questions.Millie
Hi JudyI never had the itching on Gleevec that I'm having on Tasigna. I
don't have a rash either, but itch on my headback, arms, all of the time.
It isn't any funbut could be a lot worse. On Gleevec I had itching of my
legs and feet. Isn't it funny how these drugs affect us? I
I agree with you too.Millie
--~--~-~--~~~---~--~~
[CMLHope]
A support group of http://cmlhope.com
-
You received this message because you are subscribed to the Google Groups
CMLHope group.
To post to this group,
Absolutely beautiful photo's.Thanks for sharing.
- Original Message -
From: Zavie Miller zmil...@sympatico.ca
To: zavie.mil...@gmail.com
Sent: Tuesday, October 13, 2009 2:01 PM
Subject: [CMLHope] Chat Reminder - October 13, 2009 9:00 PM Eastern - Using
Skype
Chat Reminder -
Thanks for your input GreenieI agree with you completely and just want
it to stop...Millie
- Original Message -
From: myvet...@aol.com
To: cmlhope@googlegroups.com
Sent: Wednesday, October 21, 2009 7:50 PM
Subject: [CMLHope] Re: Ron
Please people let's not start a war here. This
Thanks RobI'm in full agreement with you and have started deleting any of
those that are still discussing it. I just wish it would all stop...Millie
- Original Message -
From: Rob
To: cmlhope@googlegroups.com
Sent: Wednesday, October 21, 2009 10:52 PM
Subject: [CMLHope]
I'm so happy for you. I saw my Oncologist yesterday and he says the newest
tests show I'm 1/16 of 1% away from being in remission. I can just pray that
this will continue and I will be soon. I'm on Tasigna as Gleevec stopped
working for me about 1 year ago. I have fewer side effects on
Hi MichaelI had similar effects while on Gleevec. I had a prescription
for something that helped at the time, but can't think of the name. I
called it industrial strength Imodium :)..I also avoided anything with
tomatoes in it as they seemed to trigger a bad reaction. I had it the
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A support group of http://cmlhope.com
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What great news. I'm so happy for you. Thanks for sharing the good news
with us...Millie
- Original Message -
From: Richard H richard1huff...@comcast.net
To: CMLHope cmlhope@googlegroups.com
Sent: Tuesday, May 11, 2010 10:37 PM
Subject: [CMLHope] Latest RT-PCR
Hi all! I had my
Hi...I've been on prednisone off and on for years. I'm taking Tasigna with few
side affects. The prednisone is being given for polymyalgia and I'm on 5 mg.
now, but it fluctuates from time to time depending on my SED rate when I have
my blood checked. It helps the pain somewhat, but my Onc.
Hi GreenieHope that this finds you wellor as well as any of us can be.
I haven't received any xxx rated mail from you. In fact my mail is working
just fine. I get most of the things sent out, if not all. I went on facebook,
but got off fast as I was getting unsolicited mail from
I've had the same onc. since 1993, and he is absolutely wonderful. I sometimes
feel as if I'm his only patient, although I know that I'm not. He never rushes
me and explains anything to me. He also is in contact with my other doctors
and sends them reports after every visit. I am so lucky
Just to voice my opinionI agree with you Ricardo. We are here to help and
support one another. Please remember this as we're all in the same boat and we
need each other. Millie
- Original Message -
From: Ricardo Gadelha
To: cmlhope@googlegroups.com
Sent: Friday, July
Hello back to you
I have had cancer since 1993 and survived breast cancer, and now am fighting
CML.So far Tasigna is working for me as Gleevec stopped a while ago. I
feel luck as I've had this for 12 years now, and when diagnosed was only given
5We are all fighting for the same
Hi Susieq.
My sister had her gall bladder out years ago and they told her...no coffee,
ham, or apples. I can't remember anything else, but know that they were on
the list. Regular pork shouldn't affect it, but ham will...perhaps bacon
too. Just thought I'd pass this information on to you.
Hi Beth...
The worst side effects I had on Gleevec were constant diarrhea and that wasn't
any fun. It seemed to help to avoid certain foods, but was always a problem.
On Tasigna, I have the opposite problem, but much easier to control. I have
arthritis and I believe that some of the bone
Hi Ted,
The photo's you sent are wonderful. I really enjoyed them. I'm so happy that
you're doing so well on Gleevec. Keep writing us and letting us know how
you're doing. I'm so glad you've joined usMillie
- Original Message -
From: Ted
To: cmlhope@googlegroups.com
Hi EveryoneMy son works for a large Pharmaceutical Company, and I also
asked why the drugs we use cost so much. This was his answer. It takes
Millions + to develop these drugs and they have to charge the amounts that they
do to recoup the costs of developing them. After talking to him,
I just came back from talking to my Oncologist and mentioned your concern
over prices. He said that it costs Billions to get these drugs out to us
and that we're in the minority as not as many have CML as other forms of
leukemiaor words to that effect. I'm just thankful that they're out
Hi Peg...I'm Millie from PA. I'm 71 years young and have been on Tasigna
for 2 years now. I also have heart problems. I have a pacemaker, and
irregular heart beats, etc. I have many health issues that could kill me
before the CML, but so far, so good on it. I've had very few problems. I
Hi PegLike I said, yesterday, my only initial side effects were the
headache and constipation. I haven't had rashes...only some itching, but
that's really it. I do wish you the very best. Let us know how you're
doing. What mg. is he starting you off with? Just wondering. I know that
Hi PegActually, my Onc. had me on Sprycel after Gleevec, but I had other
issues and he felt that changing me to Tasigna was the right move. I have
joint pain, and one of the side effects of Sprycel was that and he felt at
the time, due to the fact that I was in so much pain, that Tasigna
with the difference in side effects, particularly if the joint pain
continues on Tasigna, I would be grateful.
Thank you,
Karyn
- Original Message -
From: C.M. Houtz ho...@ptd.net
To: cmlhope@googlegroups.com
Sent: Saturday, August 21, 2010 9:03:20 AM
Subject: Re: [CMLHope] Re
I'm so happy for you...Hope it will continue...Millie
- Original Message -
From: Suzieq sheila.a.wat...@gmail.com
To: CMLHope cmlhope@googlegroups.com
Sent: Thursday, September 02, 2010 5:44 PM
Subject: [CMLHope] Genetics Blood Test Results
Would you believe the blood was drawn on
Hi, When I was on Gleevec I had lots of eye bleeds and now that I'm on Tasigna,
I don't have them. My doctors were concerned and I had my eye doctor check
them all of the time. I was on as much as 800 mg. of Gleevec, so I did have
lots, but not as many as you had, Virginia. I'm thankful I'm
Hi all,
Just came back from my Oncologist and the news is that I'm in complete
remission. I don't know who was happier, him or me. It's been a long journey,
but I finally made it. I still have to remain on the Tasigna, full dose,
because he's afraid to lower it at this point. I will still
Hi JeanieI'm making Chicken Picatta for supper tonight. I'm not sure what
else, but probably some rice or pasta to go along with it. You're welcome to
come for supperall of youJust will have to cook more. I'm going to go
fix a cup of tea now, so you can join me for that too.
Hi Vivi, I was on Gleevec longer then 10 years, closer to 12 and can't answer
that question as it didn't change my blood pressure at all. I am on so many
meds for my heart that my blood pressure remains on the low side. I wish I
could be more helpful, but haven't heard of it causing a rise
Hi Skipreally loved your poems and think you have so much talent.
Thanks for adding to our Christmas by sharing them with all of us. Millie
--
[CMLHope]
A support group of http://cmlhope.com
-
You received this message because you are
Good Luck Tina,
I know that you've been wanting to add to your family and glad the doctor
gave you the go-ahead to do that. I'll be keeping you in my prayers and
wish you only the best of everything. Keep us up on how things are going
from time to time. Best Wishes, Millie
--
[CMLHope]
Hi...Glad that your tests came back good. I just had another taken as I was
undetected for the first time 3 mo. ago. I hope that it will continue, but
we never know. I see my Onc. on the 14th of Feb., so I'll know more then.
I know how happy you must be. Hope that it will continue...Millie
I agree that this isn't the place to do that. We all have opinions and
they're usually different. This is a support site, not a disagreement site.
I do have an opinion, but have decided to keep it to myself. Millie
--
[CMLHope]
A support group of http://cmlhope.com
On Gleevec I had several eye bleeds and went to my eye doctor and he said that
nothing was wrong, and it did go away in a few days. I had one since I'm on
Tasigna, but it didn't last long. At first it worried me a lot, but then I
kind of got use to them. Hope that yours has improved,
Glad to hear that your eye isn't an issue. I had several, and each time saw
my eye doctor and was told not to worry. It takes a while, but it will clear
up...or at least mine did. Happy that it's not a larger problemMillie
--
[CMLHope]
A support group of http://cmlhope.com
Hi Sherri...I didn't have the hot flashes on Gleevec, and was on 800 mg.
before being switched to Tasigna. I was, however, cold all of the time. I
wore sweaters in the middle of summer. I was in my 60's and had a
hysterectomy and still hadn't gone through menopause. I really have never
All of my love and prayers are with Zavie and his family. I wish him the very
bestMillie
--
[CMLHope]
A support group of http://cmlhope.com
-
You received this message because you are subscribed to the Google Groups
CMLHope group.
To post
Hi Victoria...Yes, I've lost hairespecially in the front... I've also lost
eyebrows and eyelashes. Loosing the eyelashes has caused problems with my eyes
as I feel like there is sand in my eyes most of the time and am using
artificial tears 5 to 6 times a day now. I don't think that
Hi Susieq
I'm no longer on Gleevec, but I did have reactions to food, especially
tomatoes, from the beginning and it lasted until I stopped taking it. The
reason I stopped was that I was on 800 mg. and it was no longer working for
me. I'm now on Tasigna, and have fewer reactionsin fact
Hi Kelly,
I wish you a lot of luck and, hopefully, success on your trip to Houston.
Please let us know how things are going for you from time to time.Hugs,
Millie
--
[CMLHope]
A support group of http://cmlhope.com
-
You received this
You're not the only ones. My skin was dry on Gleevec, and now on Tasigna, I
believe that it's worse. Guess they all do it. Oh well, I try just about
everything, and not much works. My lips are so dry that they peel
constantlyMillie in PA
--
[CMLHope]
A support group of
What wonderful news. I pray you will continue to have good health without
going back on Gleevec..or anything else. Wonderful things do
happen...Millie
--
[CMLHope]
A support group of http://cmlhope.com
-
You received this message because
Hi Greenie,
While on Gleevec I had nausea from time to time. It would last for a while, go
away, and return. Never could figure it out. I don't have it on Tasigna, so
it must have been the Gleevec. The doctors only go by the side effects that
are listed.but there are moreeven on
Hi Kelly, Susan, and Marty,
I keep reading your messages and wish I had the answers for you all. First of
all, Marty, you are such an inspiration to us all. Your outlook on things is
wonderful and you are blessed with saying the right things. I know that they
come from your heart. I wish
Hi Kelly,
Don't feel you're alone as you aren't. We all experience depression at
times, so you're not alone. I think everyone feels for the people who have
experienced these disasters in our country/world. I was very upset by it
all, but you can't fix it, so just pray for them. That's
Hi MartyI have some idea of what you go through on dialysis and it's not
fun. My sister had to have it before she passes for over a year. Actually,
her heart gave out, so it wasn't the kidneys that killed her. I know that her
diet was so difficult, and I tried to help her all that I
Hi Susan,
You have a wonderful outlook on things. I was hoping to win the big lottery
the other week. I could have had a lot of fun with that, but didn't get lucky,
so I just do what you do and spend the money in my mind :. I did want to
tell you that my only side effect is severe
Hi Kelly,
I'm so glad that you're having a good day, and hope that you have many more.
Do you ever try taking walks as I hear they're wonderful for depression. I
wish I could walk, but can't. I do try to go outside when I'm able to and
just enjoy being there. It can change your disposition
Hi MartyI've always tried to be a good person. I sometimes think that God
put me here to help others. We've dealt with so much cancer, etc. in our
families and they all turn to me and I always have tried to help them. I'm not
bragging as I just do what I do. You are the same and I
Hi Kelly.I wanted to stop by and see how your day is going. I've been busy
knitting a fashion scarf. I ripped it out 3 times, but this time, it's right.
I am always up for a challenge. I found that my quilting, sewing, knitting,
cooking, etc. takes me to a different place and I don't
Hi Marty,
Hope that you're having a good day. As I told Kelly, I spent mine knitting
myself a beautiful scarf. Not quite done, but soon. I had to soak my foot, so
took a break. My foot doctor found a blood blister the other day. I wondered
why it was so painful to stand on it. At any
Hi Kelly,
It sounds like you are doing all that you can do to get past your
depression. I know that it can't be easy as I.Like Greeniehad
issues with the interferon and there were times I could have given up.
Basically, I'm a fighter and won't give in to anything, but did tell my
KellyI'm clear across the state in the Northeastern part of PA. My son
lives in Homeworth, Ohio...probably not to far from where you live. I can't
travel that distance any more, so haven't been there. He will come visit me
in June, and I will be so happy to see him. This is my oldest
Thanks everyone for my Birthday wish. It was on the 10th, but I do appreciate
all of your best wishes.
Beth, I do think of you often and wonder how you're doing. I keep you all in
my prayers. This is a difficult disease to deal with at times...even though I
feel blessed that I haven't had
Hi Kelly, I'm so glad that you are keeping in touch. I find that sitting
here typing out the wordshelps. I don't know if you understand what I'm
saying, but it is like I'm sending away all of the bad things and not
dwelling on them. It has always worked for me to put things down in
Hi Kelly,
You know.I had the same experience with the dizzy thing. I was in bed,
and the room was spinning, etc. It happened two or three times and haven't
had it happen since. Makes you wonder, doesn't it? I never told anyone
about it. I will tell you something else...One day while
Hi Susieq,
I also wish you the best of luck on your reduced amount of Gleevec. At one
point I was on 800 mg. of the stuff and wonder now if it caused a lot of my
joint and muscle pain. I'm now on Tasigna, and that also could be a side
effect of that. Either way, it is what it is. Let us
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