Rob
On 12/29/05, andrea silveira <[EMAIL PROTECTED]
> wrote:
Hello Kat
I'm sorry for everything that you are going threw.
I hope that you get better soon. I sort of know how
you feel. I am 24 years old and I was DX a little
over 2 years ago. About a year ago I dont a lump in
my breast that I have done ultra sounds, MRI's and a
pets scan done on, they still say its nothing. Off of
my MRI the found a lump in my chest where I can to get
test done for lymphoma, where now they found something
in my brain where they want me to get testing on that
too. I'm sorry that you are overwhelmed with
everything that is going on, but be strong, And I hope
nothing but the best for you,
Andrea
--- katsietoo_99 <[EMAIL PROTECTED]> wrote:
> Hob: I wish I could blame the oncologist for my
> stopping the gleevac
> a year ago, but I cannot. It was my idea. I did
> not ask him, nor did
> I discuss it with him. It was making me really fat,
> and my stomach
> seemed to be developing some problems from it, so I
> stopped. After
> about a year, I confessed to him that I had not been
> taking it, and he
> freaked out, and then told me that if I go back on
> gleevac, it may not
> work. I know he never told me that before,
> otherwise, I doubt I would
> have quit. I know that sounds stupid, and I now
> realize I was stupid
> to stop without consulting him first, but in my
> defense, he kept
> downplaying the seriousness of the disease with me.
> He said that only
> old people get it, and that it wouldn't kill me.
> Now, he does an
> about face!
>
> I live in the Pittsburgh, PA area. There is a
> cancer center here...at
> UPMC. You know Rob, when you have so many things
> going wrong with
> your health, you sometimes become overwhelmed, which
> is what happened
> to me. It was all just too much, at one time, and
> no cure for
> anything. I survived breast cancer, eleven years
> ago, and was told
> that I was cured. Now, another doctor tells me that
> I may have
> developed the CML, as a result of the high dose
> radiation for the
> breast cancer that I had, eleven years ago. The
> worst part is that my
> oncologist then is the same one I have now, and he
> consulted with his
> partner, at the time of the breast cancer. He
> wanted me to undergo
> radiation, lumpectomy, and five years of tamoxifin,
> however, his
> partner said that he felt a lumpectomy and the
> tamoxifin would be more
> than enough considering that I had a very slow
> growing cancer called
> medullary, and that they caught it quickly.
>
> How many times I have trusted doctors, and have been
> hurt, but there
> is no alternative. I could tell you stories about
> the fibromyalgia,
> Sjogren's, connective tissue, chronic fatigue,
> etc....and my doctor,
> that would completely surprise you, and, yes, I wish
> I had sued him.
> But, at the time, I was so ill, I couldn't even get
> out of bed. I
> have to believe that this all happened the way that
> it did, for a
> reason, one I don't know, yet, but I pray that I
> will soon.
>
> Thanks, Rob. Kat :)
>
> --- In CML@yahoogroups.com, Rob <[EMAIL PROTECTED]> wrote:
> >
> > If your physician took you off Gleevec I would
> strongly suggest that you
> > need to get to a doctor with experience in
> treating CML as soon as
> possible.
> > Even when the Philly marker is gone patients still
> have to keep taking
> > Gleevec. It is somewhat similar to a diabetes
> patient taking
> insulin, they
> > have to keep taking the insulin to keep the
> diabetes under control.
> >
> > Where are you located? There are major cancer
> centers in most areas
> of the
> > country that have CML specialists.
> >
> > Rob
> >
> > On 12/20/05, katsietoo_99 <[EMAIL PROTECTED]>
> wrote:
> > >
> > > Rob: I stopped the gleevac, and was on
> nothing. The Philly marker
> > > was gone, and the oncologist never told me about
> the risk of stopping
> > > gleevac, until a year later (after I stopped
> taking it). I have been
> > > off of the gleevac for a total of one year. I
> restarted it a little
> > > over two months ago, my numbers returned to
> "really good" as the nurse
> > > said, and now I am having side-effects that I
> never had the first time
> > > that I was on the drug. Thanks for asking, I
> hope you can offer some
> > > insight. Katsie.
> > >
> > > --- In CML@yahoogroups.com, "katsietoo_99"
> <[EMAIL PROTECTED]> wrote:
> > > >
> > > > I am sick again. I started the gleevac seven
> weeks ago, and my
> count
> > > > went from 7.5, to the low 3's,...I know I was
> still under the 10
> > > > number, where the oncologist considers you
> safe, but he tested
> me, and
> > > > found the Philadelphia marker has returned,
> from a year ago. A year
> > > > ago, I stopped using gleevac, and then after
> the oncologist told me
> > > > that it may not work, if I try to use it
> again, I was
> frightened, and
> > > > restarted the medication. So far, it appears
> to be working,
> since the
> > > > numbers have dropped, as indicated above.
> > > >
> > > > About a month ago, I thought I had the flu,
> and went to the
> hospital.
> > > > I have other conditions, fibromyalgia,
> Sjogren's, chronic asthma,
> > > > connective tissue disorder, and chornic
> fatigue. I was feeling
> > > > terrible. Really tired, and my inhaler, used
> for asthma, didn't
> seem
> > > > to relieve my trouble breating. My nose was
> stuffed up, even after
> > > > taking my pill for allergies.
> > > >
> > > > The hosptial told me I was still under 10,
> seven weeks ago, and
> that I
> > > > probably had developed a bronchial infection,
> however, the hospital
> > > > could not truly tell whether or not that was
> the problem. I took an
> > > > antibiotic, for five days, which works for two
> weeks, and I began to
> > > > feel better. The strange part, is that I have
> had bronchial
> > > > infections all of my life, and this did not
> feel like a bronchial
> > > > infection.
> > > >
> > > > Now, the same symptoms are back. I forgot to
> mention that my back
> > > > (middle), hurts really bad, and that rib on
> the right that I was
> told
> > > > by the hospital doctors that I fractured, is
> hurting again. I
> haven't
> > > > lifed, or done anything to cause this pain to
> return. Plus, I am
> > > > afraid of the flu, and since they weren't sure
> it was a bronchial
> > > > infection the first trip to the hospital, I am
> wondering, could I be
> > > > suffering from a side-effect of the gleevac?
> > > >
> > > > Unfortunately, I have not been able to get a
> flu shot. I have been
> > > > trying, but everytime a clinic is set, it gets
> canceled, and my
> > > > doctor's offices do not have it. They keep
> saying it's production,
> > > > delivery, etc. I just don't believe them
> anymore. I just don't
> think
> > > > there is any left.
> > > >
> > > > Also, I cannot eat meat,..I cannot stand the
> smell, or sight of it.
> > > > This has been going on for about a week. I
> got this sick feeling
> > > > today. When I saw my oncologist, last week, he
> gave me a script for
> > > > nausea, but I do not feel nauseated, until I
> smell food.
> > > >
> > > > I am so tired of calling the doctor, though I
> know that I
> must,..but I
>
=== message truncated ===
__________________________________
Yahoo! for Good - Make a difference this year.
http://brand.yahoo.com/cybergivingweek2005/
New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com
Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. Apply anytime at http://realestatezoo.com
CML (Chronic Myelogenous Leukemia Support List)
---------------------------------
Part Of CMLHope.Com
An International Community Of CML Patients
For more information: http://cmlhope.com
Post Message: cml@yahoogroups.com
Subscribe: [EMAIL PROTECTED]
Unsubscribe: [EMAIL PROTECTED]
Change To No Mail/Web: [EMAIL PROTECTED]
Change To Digest: [EMAIL PROTECTED]
Change To Email: [EMAIL PROTECTED]
List Help: [EMAIL PROTECTED]
CML Group Web Site http://groups.yahoo.com/group/CML
SPONSORED LINKS
Chronic myelogenous leukemia Leukemia treatment Cml
YAHOO! GROUPS LINKS
- Visit your group "CML" on the web.
- To unsubscribe from this group, send an email to:
[EMAIL PROTECTED]
- Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service .
New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com
Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. Apply anytime at http://realestatezoo.com
CML (Chronic Myelogenous Leukemia Support List)
---------------------------------
Part Of CMLHope.Com
An International Community Of CML Patients
For more information: http://cmlhope.com
Post Message: cml@yahoogroups.com
Subscribe: [EMAIL PROTECTED]
Unsubscribe: [EMAIL PROTECTED]
Change To No Mail/Web: [EMAIL PROTECTED]
Change To Digest: [EMAIL PROTECTED]
Change To Email: [EMAIL PROTECTED]
List Help: [EMAIL PROTECTED]
CML Group Web Site http://groups.yahoo.com/group/CML
SPONSORED LINKS
| Chronic myelogenous leukemia | Leukemia treatment | Cml |
YAHOO! GROUPS LINKS
- Visit your group "CML" on the web.
- To unsubscribe from this group, send an email to:
[EMAIL PROTECTED]
- Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
