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Date: Thu, 6 Sep 2012 09:59:26 -0600
Subject: Re: [CMLHope] Re: [cml 2] Fw: Neutropenia - How To Avoid Infections
From: ballroom...@gmail.com
To: cmlhope@googlegroups.com
Just curious; Does ANYONE see my messages? regardless of the content I never
see a reply.I know that a lot of you seem to "know" each other as I read YOUR
content, but either no ones sees myposts or I am just not "one" of the crowd.
Thanks,Michele
On Thu, Sep 6, 2012 at 9:34 AM, <ted...@aol.com> wrote:
Richard....thanks for sharing as well. Hope you continue to do
well! Best, Tom
In a message dated 9/6/2012 12:09:59 A.M. Eastern Daylight Time,
richard1huff...@comcast.net writes:
Thanks for sharing. I also use a simuluar version. I susually
put it in when I post my results.
Richard H.
dxd 2/2003
400mg Gleevec 3/2003
Undetectable 11/03
RT-PCR negative 11/04
QT-PCR .003 11/05
RBC 8.
Gleevec Vacation 11/06-6/07
Iron infusion
11/06
Transfusions
12/06-5/07
QT-PCR .7
1/08
Gleevec 1/08
-5/08
Procrit 8/08-11/08
Gleevec Vacation
7/08-Pressent
QT-PCR .3
4/09
QT-PCR .15 6/09
QT-PCR .21 9/09
QT-PCR .28 1/10
QT-PCR .1+ 4/10
QT-PCR .468 10/10
QT-PCR .468 2/22/11
QT-PCR .323 8/23/011
QT-PCR .261
2/14/2012
QT-PCR .241 8/12/12
Next QT-PCR 4/13
On Wednesday, September 5, 2012 10:22:07 AM
UTC-5, TEDBDD wrote:
Richard...nice work, I do the same thing with my blood work. I
also keep a shorthand version of my journey that I share with my Doc's
which
they say helps...particularly if you change Doc's or have to be treated in
a
new facility. I have shared it before...but here it is. I
believe Zavie Miller, one of the original CMLers who has recently passed
away, set up the format. It is always helpful to see how others
have made it to the present....so copy format and used it to share
your journey as well if it suits you. Here it is:
Tom Dunham, BD: 8/1941 Updated:6-13--12
DX CML
12-23-2008
MDA Protocol: Tasigna-400mg; 2xday-1/09
On Flecainide for
AF...still had frequent episodes
Q PCR bone@ 0.17 on 7/09
Acute
Pancreatitis-7/5/09
Stopped Tasigna-7/13/09
Q PCRU blood-7-29-09
!
Started Gleevec-400mg/day-7/31/09
Developed rash ~ 8/19/09
Rash
treated with Steroids..improvement
Rash worsens~9/22/09
Stopped
Gleevec-9/28/09
Restarted Gleevec @300mg/day-10/8/09
Stopped
Gleevec-10/13/09-toxic rash\
AF returned infrequently
Q PCR
bone-0.05
Started Sprycel @ 100mg/day-10/20/09
Some AF...increased
FLecainde..1, 2x/day
Q PCR bone..0.07
Stopped Alcohol…no AF, ½
Flecainide 2x/day
Q PCR Blood…Non Detectible-12-13-10
Q PCR
Bone..0.01--2-25-11
Q PCR Blood…Undetectible-5-19-11
Reduced
Flecainide to 1/2 per day
Pleural and pericardial Effusion: stopped
Sprycel-12-6-'11
Prednisone 50mg /day to combat PE; 12/14/'11 gradual
reduction
Pleural Effusion clear 12-21-11
Started Sprycel
70mg/day..12-23-11
QPR bone <0.01...2-16-12
Started Sprycel
50mg/day..3-10-12
Chest pains...slightly more PL Eff 4-19-12
Steroid
Dose pack to alleaviate..still on 50mgs
Change to 20 mgs/day
Sprycel..4-26-12
Chest clear, effusion gone-5-14-12
Q-PCR
Blood-Undetectible-6-13-12
Neuropathy moving up legs, weakness noted
~7-12
Q-PCR Blood
MDA-<0.01…8-21-12
In a message dated 9/5/2012 12:06:27 A.M. Eastern Daylight Time,
richard...@comcast.net
writes:
My ONC carefully went over my first CBC and instructed me on
which readings he considered the most important. When the PCR's
started he did the same thing. He told me to never leave his
office without a copy for my records. At about the 3 year
anniversary he made a comment about having to dig through my record to
make the comparisons so the next time I took him a copy of my
excel worksheet from the begtinning and ask him if he wanted a copy of my
workbook so he could modify it for other patients but he declined.
He was properly shocked and pleased that I tried to keep an easy
review of my records.
Richard H.
On Tuesday, September 4, 2012 4:19:29 PM
UTC-5, Jeanie wrote:
Thanks Skip, My onc doesn't ever talk about my blood counts with
me. I have to ask him for a printout. I just don't
understand him at all. I do keep track of all that as they sure
don't seem to. Hang in there.
Jeanie<3
In a message dated 9/1/2012 9:20:20 A.M. Eastern Daylight Time,
skipd...@yahoo.com writes:
Great Article Lottie,
and
the things it tells you to avoid are exactly what has been told
to me, at least once or twice
a
month. My blood reports tell me I have Leukopenia, Neutropenia,
and Thrombocytopenia.
If
anyone has any of these in their report they should look
out for your ANC (Absolute Neutrophil Fill count.)
Talk to your doctor if your below 1000, which is low be extra
carful if below 500, normal is around 2000 10 9/L (that should be an
upper case little nine)
skipd
:
[cml 2] Fw: Neutropenia - How To Avoid
Infections
Neutropenia: A Vulnerable Time for Infections
What
Is Neutropenia?
There are many types of white blood cells,
each with specific roles, but their main job is to fight infection.
Neutropenia is a condition in which a person has very low amounts
of
a type of white blood cell called a neutrophil in their body. Since
white blood cells attack harmful bacteria, viruses, and fungi,
neutropenia increases the risk of infections.
How to Protect
Yourself if You Are Neutropenic
Good personal hygiene and
avoiding things that promote the growth of bacteria lower the risk
of infection. The following suggestions are for people with
neutropenia who are outside the hospital:
a.. Avoid people
with signs of infection and avoid large crowds. Wear a face mask if
you cannot avoid crowds.
b.. Avoid people who are sick with
communicable (contagious) diseases, including a cold, the flu,
measles, or chicken pox.
c.. Stay away from children who have
recently been given "live virus" vaccines such as chicken pox and
oral polio, as they may be contagious to people with very low blood
cell counts.
d.. Bathe daily and wash your hands frequently,
especially after using the bathroom, after touching animals, and
before eating.
e.. Use lotion or oil if your skin becomes
dry.
f.. Clean your rectal area gently but thoroughly after
each bowel movement. Let your doctor know if the area becomes
irritated or if you develop hemorrhoids.
g.. Brush your teeth
after meals with a soft toothbrush. Rinse your mouth twice daily
with a solution made of water and either salt or baking soda.
Temporarily avoid flossing, which can open new wounds and create an
entry for bacteria.
h.. Avoid accidents and injuries. Be
careful not to cut yourself in any way, including the cuticles of
your nails. Use an electric shaver instead of a razor to avoid
cutting yourself while shaving.
i.. Do not squeeze or scratch
pimples.
j.. Clean any cuts and scrapes with soapy warm water
right away and apply an antiseptic.
k.. Avoid gardening,
cleaning bird cages, cleaning fish tanks, or changing cat litter,
all of which can expose you to bacteria.
http://inhealth.about.com/when-cancer-care-leads-to-neutropenia/neutropenia-a-vulnerable-time-for-infections?did=t5_rss39
l..
m.. FYI,
n.. Lottie Duthu
o..
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