yes I see your messages and am glad you are blogging. I am one that has been
on a five year vacation from gleevec due to two brain bleeds and a full-blown
stroke. Every day is a gift.
Blessings,
Susan F. Zimmerman
-----Original Message-----
From: LearnToBallroomDanceOnline.com <ballroom...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Thu, Sep 6, 2012 11:59 am
Subject: Re: [CMLHope] Re: [cml 2] Fw: Neutropenia - How To Avoid Infections
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 my
posts 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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