Re: questions about colon cancer

[Guest guest]

,

welcome to the group. seems as though they have caught yours early on.

being on chemo, even on bad days, is a good thing. I'm so sorry to hear about

the

loss of your child.

The fact that your lymph nodes came back clean puts you in an excellent

position. You had surgery and now chemo so it sounds like they are being

aggressive too with treatment. Hope you continue to do well...and stay

positive...don't let the fear rule. Enjoy each day with your family! Sounds

like you will

do just fine.

regards,

Sheila

[Guest guest]

,

welcome to the group. seems as though they have caught yours early on.

being on chemo, even on bad days, is a good thing. I'm so sorry to hear about

the

loss of your child.

The fact that your lymph nodes came back clean puts you in an excellent

position. You had surgery and now chemo so it sounds like they are being

aggressive too with treatment. Hope you continue to do well...and stay

positive...don't let the fear rule. Enjoy each day with your family! Sounds

like you will

do just fine.

regards,

Sheila

[Guest guest]

,

Welcome to the group. Over the past six months or so, I've come

to know quite a bit about colon cancer, as somebody who has it.

Stage II, good surgery, no lymph node involvement - all of the

signals point to one thing - you are going to be OK. Bear out the

chemo, as it is a precautionary measure to get rid of any

microscopic traces, if any at all, that may be in the system.

If I was a betting man and I had a thousand bucks, I put it down

right now that you'll not only see both your son and daughter

through college, but also that you will teach kindergarten again for

10 years after that.

Colon cancer and lung cancer are two very different diseases.

Although they both kill about the same number of people, percentage

wise, lung cancer is more fatal than colon cancer in less advanced

stages; the reason that colon cancer is as fatal is because most

people do not get diagnosed until they are in a highly advanced

stage - IIIb or IV, which is NOT you. By far, people with lower

stages of colon cancer, like you, are cured. So while its okay to

be anxious, you got to know that a very favorable outcome is highly,

highly likely; also know that your anxiousness will also wane as

time goes on.

I, like you have four kids - 12, 9, 6, and 3, am 40, and wonder

every day, " why me. " Even though I have cancer, they need for me to

be strong, so I limit the " why me " to about 5 minutes or so. Do the

same for yours; not only is it good for them, but it also makes the

time pass a lot more quickly.

Take Care,

Joe

> Hi!

> I am 34 and was diagnosed with colon cancer stage 2 in January. I

> was newly pregnant at the time and had to have surgery. I lost

the

> baby 2 weeks after surgery and started chemo. I receive 5fu once

a

> week for 4, 6 week cycles. At the time of my surgery all of my

> lymph nodes were clean... I have a daughter who turned three

> yesturday and a son who will be 2 in September. I am very scared

> because I watched my father suffer with lung cancer and lose the

> battle when he was just 45. I was a kindergarten teacher for 10

> years but have not worked since I had my daughter. I am an

educated

> person but have been to scared to really research this disease. I

> wanted to just know about my case. I decided to check out this

> support group because I am mentally stressed. It seems like this

> comes back in different spots of your body. I will say a prayer

for

> the people who are in this support group. Peace of mind is what

I

> am looking for and hope that you have it.

> heather

[Guest guest]

,

When I read your post, I thought I had written it. I, like you am

young (32) and was diagnosed in May with CC. Also like you, I was

pregnant at the time. It was devastating, everything about it. My CC

has actaully spread to the liver and some spots on the lungs, so I

wasnt as lucky to have it caught early. The whole thing has been

difficult to deal with, but I think the hardest thing for me has been

having to terminate my pregnancy (I was 6 weeks pregnant). I have a

daughter who is 18 mos. and my husband and I were so excited about

the pregnancy and the fact that my daughter would have a sibling

close to her age. I think the hardest thing for me through all of

this (and its still hard) is seeing families with more than one child

and kids close in age and knowing that my daughter wont have that, at

least right now. I am very confident that I will pull through this

and my daughter is such a ray of hope and the sunshine in every day

that I know the only choice is to get through this and move on.

This board has been SO HELPFUL. You can read all of the information

on the web about CC, written by the Drs., but for me it is the

personal experiences on this site that are so helpful.I wish you luck

with everything and wish you a speedy recovery.

Jen

[Guest guest]

,

When I read your post, I thought I had written it. I, like you am

young (32) and was diagnosed in May with CC. Also like you, I was

pregnant at the time. It was devastating, everything about it. My CC

has actaully spread to the liver and some spots on the lungs, so I

wasnt as lucky to have it caught early. The whole thing has been

difficult to deal with, but I think the hardest thing for me has been

having to terminate my pregnancy (I was 6 weeks pregnant). I have a

daughter who is 18 mos. and my husband and I were so excited about

the pregnancy and the fact that my daughter would have a sibling

close to her age. I think the hardest thing for me through all of

this (and its still hard) is seeing families with more than one child

and kids close in age and knowing that my daughter wont have that, at

least right now. I am very confident that I will pull through this

and my daughter is such a ray of hope and the sunshine in every day

that I know the only choice is to get through this and move on.

This board has been SO HELPFUL. You can read all of the information

on the web about CC, written by the Drs., but for me it is the

personal experiences on this site that are so helpful.I wish you luck

with everything and wish you a speedy recovery.

Jen

[Guest guest]

,

When I read your post, I thought I had written it. I, like you am

young (32) and was diagnosed in May with CC. Also like you, I was

pregnant at the time. It was devastating, everything about it. My CC

has actaully spread to the liver and some spots on the lungs, so I

wasnt as lucky to have it caught early. The whole thing has been

difficult to deal with, but I think the hardest thing for me has been

having to terminate my pregnancy (I was 6 weeks pregnant). I have a

daughter who is 18 mos. and my husband and I were so excited about

the pregnancy and the fact that my daughter would have a sibling

close to her age. I think the hardest thing for me through all of

this (and its still hard) is seeing families with more than one child

and kids close in age and knowing that my daughter wont have that, at

least right now. I am very confident that I will pull through this

and my daughter is such a ray of hope and the sunshine in every day

that I know the only choice is to get through this and move on.

This board has been SO HELPFUL. You can read all of the information

on the web about CC, written by the Drs., but for me it is the

personal experiences on this site that are so helpful.I wish you luck

with everything and wish you a speedy recovery.

Jen

[Guest guest]

Hi ,

First, I'm sorry that you lost your baby. That has to make all the

things you have to deal with that much harder.

I was diagnosed T2, N0 (0/42), M0 in July 2002. I had 6weeks

radiation and Xeloda to make sure the monster was squished really

good. I did the radiation since the pathology report came back with

a moderate to poorly differentiated tumor that was typical of a

faster growing, aggressive cancer.

I'm still coming out with clean scans and colonoscopies 2 years

later. It sounds like you will probably have the same result. I

have had two additional surgeries in between then and now so it

hasn't been easy, but I'm still showing no evidence of disease.

That's what counts. I have lingering issues from all this but it's

nothing that's a big deal.

In general, I'm more of a lurker but your " hello " sounded like you

and I are in a somewhat similar situation. I would suggest that you

try and take time for yourself when you need it. I know my

experience has made me more appreciative of each day, my children and

my wife. I get up an hour and a half before anyone else to just have

quiet time and exercise. That time is very important to me to keep

me focussed on today and not what might be lurking. I still get very

nervous when I'm waiting for CAT scan results but I try not to. It's

also important to keep your relationship with your significant other

healthy so you don't get stuck in roles of caregiver and patient.

I don't think I will ever be the same but I feel blessed that I do

have the opportunity to just be a normal guy again.

I'm sorry you have a reason to be here but welcome to the group.

Miracles happen!

Cliff H.

> Hi!

> I am 34 and was diagnosed with colon cancer stage 2 in January. I

> was newly pregnant at the time and had to have surgery. I lost the

> baby 2 weeks after surgery and started chemo. I receive 5fu once a

> week for 4, 6 week cycles. At the time of my surgery all of my

> lymph nodes were clean... I have a daughter who turned three

> yesturday and a son who will be 2 in September. I am very scared

> because I watched my father suffer with lung cancer and lose the

> battle when he was just 45. I was a kindergarten teacher for 10

> years but have not worked since I had my daughter. I am an

educated

> person but have been to scared to really research this disease. I

> wanted to just know about my case. I decided to check out this

> support group because I am mentally stressed. It seems like this

> comes back in different spots of your body. I will say a prayer

for

> the people who are in this support group. Peace of mind is what I

> am looking for and hope that you have it.

> heather

[Guest guest]

Hi !

Glad to hear from you....I will try to answer what I can...and what I can't I

know the others will be able to help with! I too am reaching out to

individuals, looking for specific information and such - and people respond and

are

just sooo wonderful!

I know - the acronyms are just astounding in their abundance, aren't they?

You'll get used to them before you know it..and will be using them just

cause..well, the same things come up so often in conversations that it's just

easier

to do it in short hand! T2, N1 - that's me.. The T2 - that means that the

tumor went through to a certain layer in the bowel wall. Mine went just beyond

the fat layer (third layer I believe - there are 4 layers all told) but not

through the wall and not into other organs. The N1 means that I had 1 lymph

node involved. Of course the higher the number, the harder to fix the problem.

Same with the T1, 2,3 etc. The M is is the mets (metastic level - how many

other places in the body affected) This is what they call the TNM scale.

There is another scale commonly used called Duke's - typical, Stage 1, 2, 3 etc.

Mine would be a stage 3 on theirs I believe. Your doctor can tell you more

specifics on yours - using either scale. The TNM seems to be the most commonly

used and more " modern " scale.

Xeloda is the pill form of 5FU...the most common chemo used to fight CRC

(Colo-rectal Cancer). It was developed and shown to be helpful in extending the

stage 4 patients time...but does not conversely mean a " cure " for lesser stage.

Strange that way - they are still scratching their heads on it. But..the

nice thing about it is that you don't have to have the fanny pack with you and

the port for 5 weeks or more. It has about the same effects as the 5FU as for

side effects. It's gaining popularity. It is commonly used with other

drugs, but I'm taking it without other chemo drugs...at least for now. I will

in

fact just be starting it tomorrow - a little nervous, but I've been getting

some good feed back and tips from others here in the support group. These

people

are a God send, truly.

It's always scarrier when you've been there before - with someone else, not

YOU! I had an adopted mom that died of CRC as well - in fact the same cancer

in the exact same place - how's that for weird? I had another guy I figured

for a dad that died of throat cancer. Was there for both of them. My mom was

sick for three years. Seeing her go through it and the colostomy - don't wish

and didn't think I'd ever be at the same place. But one can never tell.

You can't look back though. Things change a great deal in the medical

field...and I know for a fact that they have made great strides. I have a

sister in

law in Roswell Memorial in NY that is battling breast cancer that has metastized

(probably spelled wrong). But their treatment has kept her going - and sane.

No small task!

I'm a single woman, 42, no kids. I can't imagine trying to take care of a

family when you are ill...but on the other hand, they can be such a joy! Such

an inspiration to fight - and fight hard! Hope that you have help...and don't

be afraid to ask for it either. My sis in law scolds me about that - made it

clear from the start that it's a real necessity This is not just the for the

daily stuff, but the for the emotional and spiritual help as well.

You will do well to think ahead to October...my " finish time " is just about

the same time. 5 1/2 weeks of chemo/rad - off for six weeks, then surgery). I

keep telling myself it's just so many weeks...and then done! I've started a

journal as well, just for me. I recommend it - just because - some things

you can say and some you can't - but you still need to let it out. I know what

you mean about the bumps and aches - I have a tailbone that lets me know it's

there...but I know it's fine cause nothing showed on the scans. It's a tough

tightrope walk - when to push to have something examined and when not to..when

to just ride it out.

Staying active will help - they say it moves the chemo through, and out of,

the body faster so it hits less hard that way. I hear lots of water as well

with radiation treatments - cause of the damage it can do to the bladder.

Glad the hubby is there for you...and that he's the layed back kind.

Sometimes pollyanism gets on the nerves, but it's still good!

Write when you want and can....stay active and hang in there!! My prayers

are with you.

Sheila

[Guest guest]

,

I found out about my cancer when I went to the ER b/c I was having a

pain in my side and I was concerned about my pregnancy. The drs.

thought it was gallstones, but unfortunately that wasnt the case. All

of the drs. I saw initially were so worried about doing any tests b/c

I was pregnant and b/c of that they did not do thorough job and

misdiagnosed me with pancreatic cancer. Thats not a good thing, to

say the least and at that point we left our area and went down to

s Hopkins. Since then the care has been exceptional. I started

chemo almost immediately, after having the D & C and also a port placed.

I am on Folfox 6 + avastin (5fu, oxaliplatin, leucovorin and avastin).

I go every 2weeks and have a pump that I take home for 46 hours. Of

course its been difficult, but I know that I have to have this to

begin my journey to recovery.

When I found out that I had colon cancer instead of pancreatic cancer

my entire outlook changed and I am optimistic that we will get

through this and move on. I have actually been feeling great since I

started. I had one day after my first treatment that I was sick but

other than that I am fine. A little tired, but I'm not sure if its

the chemo or chasing my daughter around:)She keeps me busy and I

wouldnt have it any other way.

I was suprised to see that they are waiting so long to retest you.

Did you have a ct scan? My dr. does it every 6-8 weeks and monitors

my cea level and ca19-9 in between. So far things are going well. I

was just rescanned and the tumors in my liver have shrunk by almost

50%, which was great news. My big concern now is the spots on my

lungs. The liver surgeon I saw was optimistic about getting this out

of my liver, but if they cant get it out of the lungs, thats not

going to help. I am still optimistic and looking forward to when

surgery is the next step. I have too much to do in this life and like

you want to have more children so the only option is to get through

this. Of course I have my moments but all in all I am carrying on

with my everyday life and enjoying every minute with my daughter and

husband and family.

Good luck with everything and if you ever need to, you can email me

privately at J2338@....

Jen

[Guest guest]

Hey , I've inserted some comments from your questions.

>

>

> Hey

> Your email was so nice. I don't know why, but I am not sure what

some of the short hand and terms people are using mean. Is T2,

stage 2? Is 0/42 how many nodes were tested and clear? What is

Xeloda?

There is staging information on the national cancer institute

website. I found it from a google search and also under the links

portion of this group's site:

http://www.nci.nih.gov/cancertopics/pdq/treatment/colon/HealthProfess

ional/page3

I guess you'd call my tumor a stage I (since it's a T2). Yes, 0/42

means that of the 42 lymph nodes they took out, none of them came

back positive for cancer. However, the pathologist noted cancer

cells in the channels between the lymph nodes which I took to mean

that I was fairly close to being a stage III. That's why I took the

aggressive approach to treatment.

Xeloda is a pill that the body turns into 5-FU. Basically, the

foundation of all colon cancer chemo is 5-FU with other drugs added

for enhanced effectiveness. The 5-FU effectiveness is also enhanced

by radiation. Since my tumor probably had not spread and the tumor

was aggressive, the radiation/chemo was probably going to hit any

left over cancer cells.

> Your story sounds very much what I might be heading towards...

> Since my father died from cancer, I always have that in the back

of my mind. I do have my really positive days that I feel like in

October this will be over, but I also have my... " what is this bump,

what is this ache? " days! I suppose it will be like that from now

on. How often do you get follow up tests done?

My mom died from Pancreatic cancer in 2000. I am so thankful I

managed to get colon cancer instead of pancreatic cancer. Colon

cancer is treatable, but pancreatic cancer is much closer to a death

sentence.

Yes, you will have those aches and pains. After all, they scamble

up your insides pretty good when they get in your abdomen. Watch a

surgery on TV sometime and you'll see that they " manhandle " things,

then stuff them back in.

I get some sort of scan every 4 months. I may be going to every 6

months soon but I'll have to discuss that with the Onc. I also get

a colonoscopy every year. I'm trying to schedule my next

colonoscopy for early September.

My rule of thumb for the aches and bumps is that if they don't last

very long, they aren't a concern. You have only started to recover

(I think). The chemo will probably keep you from doing too much but

you can still do a lot.

> Taking time for yourself sounds soooo great. I went to the gym 3

or 4 times a week before this mess, but I haven't been since.

Between the chemo and my 2 kids I am too tired. My children are

also horrible sleepers and get up at the crack of dawn so that adds

to me being tired.

> Like you said, this has given me a new perspective on life and

what is important!!! I enjoy every sleepless moment with my children

and husband. He is good for me because he is very layed back and

only thinks of the best outcomes!

Hang in there, things will get better. Chemo tends to bring you

down but you can make it. Before you know it, you'll be going to

the gym again. When you need to rest, take the time to rest. Let

others help you. It is part of being gracious to accept help

politely when you really need it. It's tough to do sometimes but

it's part of being one of God's childern. Jesus knew when to accept

kindness from others gracefully. We all need to learn that too.

Miracles happen,

Cliff H.

[Guest guest]

Cliff,

thank you for clearing that up for me. My mother in law had stage one cc 1 year

ago and she had no treatment after the surgery. I went to univ, of Penn for my

surgery (Jan) and they only took 20 nodes out that were all clear. 42 sounds

very cautious! that is great.

I wonder why my onc didn't speak about xeloda to me... A pill sounds much better

than my 2 hour iv drip.

I like what you said about Jesus excepting help because that is one thing I have

a hard time doing. I want to continue being exactly what I was before.

have a great day!l

heather

__________________________________________________

[Guest guest]

Cliff,

thank you for clearing that up for me. My mother in law had stage one cc 1 year

ago and she had no treatment after the surgery. I went to univ, of Penn for my

surgery (Jan) and they only took 20 nodes out that were all clear. 42 sounds

very cautious! that is great.

I wonder why my onc didn't speak about xeloda to me... A pill sounds much better

than my 2 hour iv drip.

I like what you said about Jesus excepting help because that is one thing I have

a hard time doing. I want to continue being exactly what I was before.

have a great day!l

heather

__________________________________________________

[Guest guest]

Sheila

nice to meet you! I am sorry about all of the times you have already dealt with

this disease hurting the people you love!! It is tuff!

Thank you for your explanations! I love my doctor but all he told me was it was

stage 2 cancer and it did penetrate the colon wall. I don't know what

layer....How many lymph nodes did they test on you?

Did you say that you were having your treatments and then surgery?

My children are a blessing! They are a wonderful distraction! My husband is

great but it can be annoying when he just blows off my concerns and says I will

be fine! All though I WILL be fine!

I hope that you have a support system aroung you! I am learning that you do

need to lean on people!

God Bless!

heather

__________________________________________________

[Guest guest]

Oh my!

this really stinks

I hope this disease will soon be a bad memory and one day you will hold a

child of your own.

I don't have fancy medical advice as you are getting what most get. However I

would recommend prayer and conversation with someone who shares your faith.

If you are not religious perse now is a time to tap into your spirituality.

Faith in something outside yourself is the glue that has held so many of us

together through all this.

I pray that God (however you see God) will bless you in the days ahead.

Welcome, Hugs and prayers

Narice

[Guest guest]

Oh my!

this really stinks

I hope this disease will soon be a bad memory and one day you will hold a

child of your own.

I don't have fancy medical advice as you are getting what most get. However I

would recommend prayer and conversation with someone who shares your faith.

If you are not religious perse now is a time to tap into your spirituality.

Faith in something outside yourself is the glue that has held so many of us

together through all this.

I pray that God (however you see God) will bless you in the days ahead.

Welcome, Hugs and prayers

Narice

[Guest guest]

Oh my!

this really stinks

I hope this disease will soon be a bad memory and one day you will hold a

child of your own.

I don't have fancy medical advice as you are getting what most get. However I

would recommend prayer and conversation with someone who shares your faith.

If you are not religious perse now is a time to tap into your spirituality.

Faith in something outside yourself is the glue that has held so many of us

together through all this.

I pray that God (however you see God) will bless you in the days ahead.

Welcome, Hugs and prayers

Narice

[Guest guest]

Hi !

No problem - glad to help if I can. Small return on the number of times I've

asked questions of this wonderful group.

I have started my chemo and rad treatments today - and thank God! - so far so

good. The Xeloda is giving me that giddy, med head/kinda stoned feeling and

very dry mouth...but if that's the worst I have to go through with it -phew!!

that will be such a relief. ALso, it has increased my antsiness - I had a

good case of restless legs, but I often get that with medicine - even just cold

meds. I'm just praying that the drug doesn't worsen side effects along the

way.

I took the anti-nausua first this morning, waited a half hour, then took the

Xeloda, then waited another half hour and then ate. It seemed to work very

well (thanks to the pharmacist for that good advice!). But tonight I took the

xeloda and waited before eating, without the nausua med...just to see if in

fact I really need to take it or not. If I can do without one more med in body,

the better off I am I'm thinking.

The rad was ok - just very indifferent kind of staff. That darn pillow they

have my face shoved into is like cement...really, really hard. I can't

breathe that well either - in the prone position...so it was hard..and extra

long

while they took xrays etc..and then pics of the lovely map on my behind..and

then finally the rad treatment. Worse was not being able to see anyone in the

room...no announcement, just suddenly feeling someone drawing something on my

butt. Oh well...no other real issues, except that tatoo they did! Ouch!

Cheeks were fine, the midpoint where the spine is smarted a bit.

I came back to work afterwards and had a long talk with a woman who's husband

has cancer (different kind) and was treated at MD and was very

pleased with them. She also knew what they are like around here too...she was

very

helpful and a good listener! Highly recommended that I get a case worker

for the insurance as well - something I'm doing as well. (So blessed to have

people that really DO have some experience and good advice). I have some other

co-workers that I talk with and they are compassionate and helpful too. More

than that, I have a boss that's really trying to work with me on sick days and

such if (when) needed...found out though today I was not eligible for FMLA -

have to be an employee for a year before that can kick in. I've worked there

for a year almost, but as contractor till three months ago. I was really

worried about this. But they have generous sick time...it should see me through

till the surgery - if not all way thru that as well. Depends a lot on how the

treatments go. They consider it short term disability.

Sorry to be so long winded again...but I'm doing well!! ....so far so good! I

can only hope and pray it continues, and that yours will be a breeze as well.

I have a sis that does the pollyanna thing - and sometimes...um um um...I

have to hold that tongue! So I know what you mean! He's either fronting for

your sake, or in denial for himself....but some folks just never realize how

" cheerful optimism " can come off sometimes....but just say a silent thanks that

he's trying...and not a downer.

Take care of yourself, thanks for writing back! Give those babes and extra

hug!

Sheila

[Guest guest]

it doesn't take long to become " educated " around here!!

[Guest guest]

it doesn't take long to become " educated " around here!!

[Guest guest]

Hey - day 2 - still going strong!

Hope you are doing ok today too!

Sheila

[Guest guest]

msheila7@... wrote:

Sheila

keep it up! I am praying for you!

heather

__________________________________________________

[Guest guest]

msheila7@... wrote:

Sheila

keep it up! I am praying for you!

heather

__________________________________________________

[Guest guest]

msheila7@... wrote:

Sheila

keep it up! I am praying for you!

heather

__________________________________________________

[Guest guest]

thanks ! need all I can get!

Wishing you well,

Sheila

[Guest guest]

thanks ! need all I can get!

Wishing you well,

Sheila