new to this list

[Guest guest]

Welcome, Lynn. I, too, believe miracles happen, and it is so exciting

to see it. I'm glad you joined the list!

Joy

http://community.webtv.net/joybelle15/ROSESCLUBFOOTPAGE

[Guest guest]

Lynn,

That's one of the many reasons we're here. We want people to learn

about Dr. Ponseti and how much he can go for our children without

putting them through a major surgery. I've been telling my husband over

and over how I am so glad everything has come together for Kim and

. I must admit that it brought tears to my eyes when I read

how well things were going for Kim - and I'm usually not that emotional.

Please know that we are here for Kim and will do everything we can to

help her out.

Lynn3633@... wrote:

> From: Lynn3633@...

>

> Hello everyone...I joined this list to thank you for all the help

> you've given to my daughter, Kim. (also known as Pinkyz97) With

> everyones'

> prayers and my daughter's fortitude, my grandson is going to be

> treated without

> surgery...I believe in miracles and I do believe we are all seeing

> miracles

> happening right now. Thank you again for everything you are doing

> for Kim and

> ....Sincerely, Lynn

> -----------------------------------------------------------------------

> [

[Guest guest]

Hi there everyone,

My name is Jeanette. I am 31 and I had open RNY on June 22,1999. My starting

weight was 365 and right now I am at 202 lbs. I had an bleeding ulcer from

September to December of 1999 and I had lost a lot of blood and I had to have a

transfusion on December 22. Since then I have been battling to get my

hemoglobin levels up to par. Well I just found out last Thursday that my levels

are doing great. And today my family doctor has given us the ok to start trying

to get pregnant......So here I am on the list.

I was wondering if any of you had had a problem with malnutrition prior to

pregnancy? And if so was there any underlying problems because of it. I should

include that we have 2 daughters ages 3 1/2 and almost 5. They were both

delivery by C-section and I had a general anesthetic because I was too big for

the anesthetist to insert the epideral into the proper spot in my spine.(both

times the doctor tried over 10 times to get the needle in, I had the bruises to

prove it....LOL I will still have to have a C-section with the next one we

have, but I am praying that I will be able to have a local anesthetic this time

round.

So now, let the fun begin and wish me luck trying.

Your friend,

Jeanette ston

Fort St. , British Columbia, Canada

RNY June 22/99

Dr. Ian on

Toronto, Ontario, Canada

pre-op 365 lbs BMI 58.9

current 202 lbs BMI 32.6

Minus 163 lbs as of June 22, 2000

ICQ # 45330088

[Guest guest]

They are not talking about surgery at all. They are afraid to open him up. If

they do they will remove all of the colon.

I really don't know the extent of the mets. They initially told us they were

both in and around the liver trying to form a new organ if you will.

Maybe besides support for my boys that would be my 1st question. What questions

should I ask and whom should I direct them to?

He is going to our old Dr. in the Pittsburgh area for advice on what they might

have to offer in that area.

Thanks for your response.

Narice

Re: New to this List

Hi Narice and welcome to the forums. Has your husband had his

abdominal surgery yet? Can you describe where / how many the liver

mets? It helps a lot if they are in one lobe only.

Barry

>

> > HI - I thought I had sent a post earlier but don't think it

went

> > through so I'll try again. I'm 36 years old, married with two

> > children 4 and 7. I was dx with stage III colon cancer in

April. I

> > had surgery, they removed a tennis ball sized tumor, 22 lymph

nodes

> > (one with cancer) and cancer was found in the fatty tissue

around my

> > colon. I also had my appendix removed because my cancer was

in the

> > beginning of the colon. I started chemo in May

(5FU/CPT11/Leucovorin)

> > and will finish in October. I don't have many side effects,

they are

> > controlled by compazine, zofran/imodium/ambien. My red and

white

> > counts are low so I get shots for those. I am over the shock

and now

> > am in denial. I guess I need a place where others are going

through

> > the same thing. I don't really have an questions other than

how to

> > get through this. I am young and don't want to have to worry

about

> > this for the rest of my life. Thanks for the opportunity to

tell my

> > story - Donna J.

> >

>

>

>

[Guest guest]

Hi, Narice - This is a group no one would choose to join but I am glad

you found us. It is the perfect place to ask questions, get varying

opinions and to vent!

My husband and I live in Clearfield, PA - just a couple of hours from

you up there in the NW corner of our great state. We went to Pittsburgh

for a 2nd opinion and met with Dr. Ramanathan there - but Tim is

receiving all his treatments in DuBois at the Hahne Cancer Center.

There are quite a number of Stage 4 members here who were given the same

pessimistic prognosis as your husband and are 2, 3, and even 4 (maybe

more) years past initial diagnosis. There are many options and don't

let anyone tell you differently. But it may take unrelenting

persistence on your part to find the best treatment for your husband.

You are right that faith is very important in this battle. Praying for

you, your husband & family and everyone who is fighting this horrid

disease.

Welcome -

Peggy

May wrote:

> My Name is Narice. I'm new to this list too. My husband, Phil was

> diagnosed with stage 4 colon cancer with liver involvement on June 20.

> You are sooo right about the shock. Ouch!!! The primary tumor is 16cm

> and causes partial bowel blockage which is relieved somewhat by taking

> Senekot. There is some pain after BM's. The myriad of drugs for

> everything from pain and nausea to hiccups is alternately disturbing

> and amusing if that makes any sense.

>

[Guest guest]

Hey, Donna.

I'm 45. I was diagnosed with Stage III back in April (My

GP and I thought I had hemorrhoids.... glad I went to a

GI doc!). If I hadn't mentioned the " hemorrhoids " to my

GP, I would not have had the colonoscopy, since my HMO

would normally not cover it until age 50. And I would

still be cancerous right now. I wish these folks would

wise up to the fact that 50 is too late....

I had a resection (sigmoid and partial rectal), and had

an iliostomy for 10 weeks. I'm on

5FU/Leukovorin/Oxaliplatin, 48 hours of infusion every

other week.

I had three treatments, then took a break to get the

iliostomy removed (Woo hoo! That was a red-letter day!).

Right now, I'm three days away from resuming the chemo,

and I feel as good as ever. I'm not really looking

forward to resuming chemo, as I've had a few minor side

effects, but I'll tell you what: if it will kill off this

beast, it's worth it.

From all I've seen and read, Stage III is curable for

almost all patients. I fully intend to live at least

another 30 or 40 years!

P.S. I agree that this group is a tremendous source of

information. You're in the right place.

--Chuck

Donna Judkins said:

> HI - I am 36 years old, married, two children 4 and 7.

I was dx with stage III colon cancer back in April. I

had surgery to remove the tennis ball sized cancer, 22

lymph nodes (one being cancers) and cancer was found in

the fatty tissue around my colon. I started chemotherapy

in May (5FU/CPT11/Luec). I will have chemo for a total

of 6 months, ending in October. I have been doing okay,

all side effects for 3 days after chemo are treated wtih

compazine/zofran/ambien/imodium. My red and white counts

are low but I am getting shots for those. I was in shock

about all this and still think I am in denial. Is anyone

else going through similar treatment? Just feel like I

need another place to vent with people going through

similar stuff - thanks, another Donna J.

>

>

[Guest guest]

Hi Narice,

Welcome. This is a great place to learn and get hope. Has your surgeon had a

lot of experience with colon cancer? I personally don't take any doctors word

as gospel. When my dad was diagnosed (age 76) he was admitted to the hospital

that day without a surgeon in mind because we felt it would be easier on him as

he was already prepped and had been off his Coumadin for five days. I called

around to family members (and asked staff at the hospital I knew) for their

recommendations. One doctor came highly recommended (and was a casual friend of

my cousin) but was off for the weekend. His office sent his partner to talk to

us (and do it) but we held out until we got the orginal doctor (very awkard

situation). That was in July of 2002. Now three surgeries and 6 months of

chemo later my Dad is doing well. I ran into my cousin shopping about a month

ago and she related how the surgeon had recently extended his condolences on the

loss of her uncle! She gently informed him that her uncle was still with us and

doing well. Of course he was apologetic and embarrassed. He thought it was so

bad that he just naturally assumed he had passed away.

Kathy 1

Re: New to this List

Hi, Donna - Actually your first message did come through to my

computer....its a Yahoo thing and message delivery can be capricious at

times.

Welcome to the CCS group. You have come to the right place for support

and information. I've been a member here a fairly short time but it has

proven to be the absolute best place to obtain encouragement and

information needed to help us make good decisions about my husband's

course of treatment.

I think everyone here can identify with the shock and denial you mention

upon receiving the diagnosis. Life seems to be going along fine - then

suddenly, without much warning - normality has left the room. There

are members here who have been diagnosed at Stage 3 - hopefully some

will share their stories with you.

Don't forget you can get a ton of information from reading the archived

messages also.

Best to you and your family -

Peggy

Donna Judkins wrote:

> HI - I thought I had sent a post earlier but don't think it went

> through so I'll try again. I'm 36 years old, married with two

> children 4 and 7. I was dx with stage III colon cancer in April. I

> had surgery, they removed a tennis ball sized tumor, 22 lymph nodes

> (one with cancer) and cancer was found in the fatty tissue around my

> colon. I also had my appendix removed because my cancer was in the

> beginning of the colon. I started chemo in May (5FU/CPT11/Leucovorin)

> and will finish in October. I don't have many side effects, they are

> controlled by compazine, zofran/imodium/ambien. My red and white

> counts are low so I get shots for those. I am over the shock and now

> am in denial. I guess I need a place where others are going through

> the same thing. I don't really have an questions other than how to

> get through this. I am young and don't want to have to worry about

> this for the rest of my life. Thanks for the opportunity to tell my

> story - Donna J.

>

[Guest guest]

a, to tell you the truth, I don't know if my carrier

(Cigna) would cover it or not under normal

circumstances. Since I had an unsual symptom (blood in

my stool), it was covered with no questions asked. I

based my statement on what my siblings and co-workers

have told me. I have three sisters who got the same

response from their carriers: no routine colonoscopies

until age 50, and my coworkers who were also told the

same thing. Of course, I work for a large corporation

with about six HMO's to choose from, so they probably

have a different carrier.

I must say that Cigna has been very helpful, including

approval of Oxaliplatin, and that ain't cheap!

Thanks...

Chuck

erica said:

> Chuck,

> Being in the insurance feild I can't help but ask who

your carrier is. I mean I work for a major NY based HMO

and we have no limitation or pre authorization process

for a colonoscopy. Regardless of age, if your primary or

GI specialist oders the test, its covered minus the out

patient copayment.

> I am just curious because such an insurance company is

severely behind in the times and potentially could harm

the well being of a lot of their members.

> a

--

Chuck Tharp

veloman@...