Ciao a tutti!
First of all: I am still very interested in this group! I am Dutch; but I live
and work in Italy and it is very helpful receiving all the information.
And Carolyn: I am a grandfather of 61, but I still feel young, could it be the
case that glivac helps to look young? I still have my black hairs; and my
daughters sometimes laugh; saying that I should paint them grey, because it is
not natural to have still black hair on my age!!
But more important is that I am still alive; thanks to glivec, and I am evry
optimistic; knowing that there are other and new possibilities, if glivec does
not work anymore. I have been on glivec from the very beginning; in March 2003;
am on 600 mg. The CML has been discovered during a regular check for my colon
cancer, that has gone, and I live with a colostoma since 10 years, but thanks
to technics as irrigating; I can have a normal life.
I sometimes read that fellow CML-ers had a cancer before. I wonder if the
radiotherapy could not be the cause of this disease for those who had such a
therapy before. I myself had a very heavy radio during one week; just before
thes surgery.
Of course I am not happy that I have the CML and I did not reach the
zero-status yet, although sometimes almost. But The side effects are quite
bearable for me and the consequences of the other cancer are a hundred times
more unpleasant.
Living far from your family is always problematic and that is the reason we
decided to buy a house in Holland; I will stop working in July 2008 or at last
in July 2009. We had problems with our daughter during the summer holdoay, shey
got a heart infarctus after having given birth; fortunately all went well and
now I have big concerns for my mother: she has a colon cancer and the
specialists suggested surgery in spite of her age: she is 92 years old! I feel
so sorry for her; she has got two children; my sister died beacuse o breast
cancer iwo years qgo, my mother got breast cancer as well and her breast have
been amputated two years ago, now she has this colon cancer, I am the only
child left; strange that she had to get the same cancers as her children...
The big problem for me is that she asks me advice for this surgery, I feel very
responsible, but I am not a doctor myself... I am so happy that I never told
her that I have this CML....
I wish the best to all of you and especially to those who make this site
possible!!
Tanti saluti;
Marino
John Kuptz <[EMAIL PROTECTED]> wrote:
Hello everyone,
I am fairly new to the google group. I am a 62 year old grandmother who was
diagnosed with CML in Nov of 05.
When I was first diagnosed my platlets were over 1 million. I was put on
Gleevec immediately with good results the first 3 months when my liver
function was affected. I jaundiced and had to be pulled off everything
until the liver could recover. That took about 8 weeks to come back. I was
then sent to the Medical College of Milwaukee. Sprycel was not FDA approved
yet but was due to be on the market it about 4 months. We bridge that gap
with hydrea.
When Sprycel was approved (thank God) I was put on 70mg twice a day. This
worked so well that It just about took out my Bone Marrow. Again I had to
be pulled off until recovery of the marrow could be again reached. Since
then I have been on only 20mg twice a day with wonderful results. I do have
to have a bone marrow test on Tues. They are looking so see if I have
achieved a log 3 reduction. I wasn't quite there at my last marrow test. I
do have some side effects-Joint pain, dizziness, weight gain and extreme
anxiety all of which I can live with but I can't live without the Sprycel.
The anxiety is due to family problems. A sick husband, a daughter with
diabetes and a son without a job. That is enough to cause a little stress.
But I continue to trust in my savior Jesus Chirst and He sustains us all
daily.
Carolyn
----- Original Message -----
From: "C.M. Houtz"
To:
Sent: Saturday, September 29, 2007 7:17 AM
Subject: [CMLHope] Re: Hello to All
>
> Hi Pat. I'm really new with this group so don't know if my writing will
> work for you or not. I have been looking for someone on the Sprycel.
> I've
> been on Gleevec for years (since it came on the market), and it has done
> well, but not put me into remission. I'm close, but not there yet. I'm
> lucky to have a wonderful Oncologist and have had him for many many years.
> Before my Leukemia, it was breast cancer. That has gone fine. It has
> been
> about 12 years since I had my right breast removed. When my doctor took
> me
> off the Gleevec I was on 800 mg a day. The Sprycel has had some side
> effects, but then we're not positive it's that causing it. I also have
> lots
> of other health issues and so it's hard to know which medication is
> causing
> problems. Right now I'm off of the Sprycel (taking a vacation), and all
> is
> well with me so far. I have heart problems, and severe arthritis, among
> other things. I now have developed a muscle problem, but my doctors think
> it's from the Arthritis. They pulled me off of a few medications and
> ended
> up putting me on Prednizone (sp), and some of the pain has gone, but not
> all. I will see my Oncologist in a couple of weeks, and we'll go from
> there. It's hard when you see many doctors. I have a Cardiologist, my
> primary doctor, (who is great), and also a doctor for pain management.
> They
> all try to work together and do an outstanding job.
>
> On Gleevec, I suffered from diarrhea from the onset of Gleevec with some
> of
> the same problems you're having. I need to take meds to stop that, and
> have
> managed to control it somewhat. It is terrible as you never really know
> you're safe when you want to go out. I just don't eat much and that
> helps.
> I never got sick to my stomach from the meds, but then I don't smoke. I
> have in the past, but many many years ago I stopped, and thank God for
> that.
> My husband had a heart problem at the time and so I figured it was the
> least
> I could do as he smoked also. In the end, he kept smoking ending up with
> a
> quadruple by-pass, but I never smoked again.
>
> I don't know that I've helped you at all, but hope that it helps to know
> that there are others that are going through the same things, or close.
> My
> Oncologist is the best in the world. He takes time with me and we've
> become
> friends. He says I make him work for his $, and I tell him that's what
> he's
> suppose to do.
>
> Good luck with the things going on in your life. I know it's difficult at
> times. There are times I have to kick my self to get out of a depression,
> but manage to do it, even though the Arthritis keeps me from raising my
> leg
> that much.
>
> Take care and write if you'd like. I will keep you in my prayers. As
> I've
> said, I'm so new at this and never have gotten into the weekly chats.
> Perhaps I should, but don't always know if it's right for me. Millie
> ----- Original Message -----
> From:
> To: "CMLHope"
> Sent: Saturday, September 29, 2007 4:50 AM
> Subject: [CMLHope] Hello to All
>
>
>>
>> Just wanted to check in with everyone. I am saddened that there is
>> such little communication amongst the group these past months, but I
>> guess I shouldn't be one to complain because I have not participated
>> near enough myself. What is going on? I know there was some conflict
>> sometime back and someone started another group. Has everyone deserted
>> this one and went to it or what? Something happened to our computer
>> and I've lost some things but my hubby has been working relentlessly
>> and has recovered some things.
>> Anyway, I still have not reached my zero mark.I am basically at a
>> standstill. I am having other health problems. I think I've told
>> everyone already I am now battling COPD. My appetite decreased so much
>> when I started taking Gleevec and now it is non-existent. I have to
>> force down what little I do eat. I basically live off of cereal and
>> soup and as soon as I take 2 or 3 bites and it hits my stomach, I
>> can't even make it to the bathroom. I have dirrhea constantly. If I
>> take my lotomil, then I'm constipated. I was having so much trouble
>> with my stomach, my primary doctor ordered a cat scan which found
>> nothing. I am a smoker and I am constantly quitting and restarting.
>> I've been on and off of the chantix(the quit smoking pill) and the
>> nausea from it was just horrific. None of my doctors can tell me if
>> maybe I shouldn't be taking it with the Gleevec. Not being able to
>> quit and stay quit is causing me severe depression. I know how
>> extremely important it is for me to quit. I'm also going through early
>> menopause which I am told is probably caused by the leukemia and this
>> too has been a terrible experience. I am under so much
>> stress...fininacial problems, a sick husband and a grown son who is
>> bipolar just to name a few. I broke down at my last visit with my cml
>> specialist and he wants me to try the sprycel, wrote me a script which
>> I haven't filled yet as my primary doctor was wanting to see what
>> issues I had with my stomach and I wanted to see what come of that
>> before I changed over. I really wanted to tough it out with the
>> Gleevec in spite of all it does to me so I would have the sprycel to
>> turn to should the Gleevec stop working. I'm just a basket case. I'm
>> now sleep deprived. Just cannot get in that 3rd stage of sleep...I
>> don't know if this is related to the COPD or what? My primary doctor
>> who 3 years ago was so wonderful has so many patients now, he might
>> spend 5 minutes with me, walks out while I am still talking, doesn't
>> get my scripts right...he's just in such a hurry all the time. I just
>> feel like giving up sometimes. I would love to hear from all of you
>> and know how you are. I really could use some comforting
>> encouragement, support right now....or just to hear how well your
>> situation is going would give me inspiration. I know I can expect some
>> criticism about the smoking...it won't hurt my feelings...I've heard
>> it all already. I've never asked this question before but are there
>> any smokers among the group, if so would you please email me
>> privately. I know if you are a smoker, you may fear ridicule, but it
>> will be kept private between the two of us...and I'm not fearful of
>> ridicule. I know only too well how I am killing myself. I've already
>> been told COPD will probably be my death sentence rather than CML.
>> I've never been a drug user, smoked a little weed back in the day, not
>> a drinker but I have a horrendous addiction to cigerettes. I'm
>> shameful but I'm honest.
>> Hope to hear from some of you soon. If you think of me,please pray for
>> me. I'm starting the patch tomorrow. It is not the first time, but I
>> pray this will be the last time I have to wear them.
>> Love, Peace, Hope & Prayers, Pat Reynolds
>>
>>
>> >
>>
>
>
> >
---------------------------------
Yahoo! oneSearch: Finally, mobile search that gives answers, not web links.
--~--~---------~--~----~------------~-------~--~----~
[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, send email to [email protected]
To unsubscribe from this group, send email to [EMAIL PROTECTED]
For more options, visit this group at http://groups.google.com/group/CMLHope
-~----------~----~----~----~------~----~------~--~---
