Re: Stage IV Colon Cancer -- mom

[Guest guest]

Hi ,

Sorry to hear of Mom's recent diagnosis.

I also have stage 1 V CC. I have been getting CPT-11 for the past 4

month's and have not had the horrible side effects that we have read

about. Although everyone responds differently this was my drug of

choice under the circumstances.

Don't think that Mom is sugar coating this. She is trying to be

strong for both you and herself.

I have to get ready to go to the hospital now for cycle #4. After

that I will go food shopping and pick up my daughter from school.

Here is 's site that will answer many of your questions. He is

our guru and has helped all of us immensely

http://ourworld.compuserve.com/homepages/suthercon/

We are all here for you and Mom.

Hugs,

Tink aka

[Guest guest]

Hi , my name is Lucy and I share what you are going through. My mom was diagnosed with Stage IV Colon Cancer last March and was operated in April. She also has mets to the liver. She has been on CPT-11 for several months now. Her biggest side effect is diahrea, she suffers that very badly. Because her diahrea is so severe she has had to be hospitalized because she loses calcium, magnesium and potassium. She has lost a tremendous amount of weight. But I thank God everyday that she is still with me. Today she takes lots of supplements prescribed by her dr, she flucuates in her weight, sometimes she gains two or three pounds then she loses them. Everytime she goes in for chemo, they give her an extra iv of fluids along with magnesium. She has energy, is able to eat (is hungry) and we do things together. I got her a wheelchair so we go to the mall and go shopping. My mom is the love of my life, we have this super great relationship and only the people in this group can understand how hard it is to live with your loved one knowing deep down inside what is going on. But all I can tell you is to keep reading all the post, learn as much as you can, take one day at a time and love her as much as you can. If you ever need to talk or just vent you can always email me at lucy@.... Take care and may God bless you and your mom.

Lucy

Stage IV Colon Cancer -- mom

Hi Everyone,

My name is . My mother was diagnosed with colon cancer in

early December, after going to the hospital with abdominal pain.

They originally diagnosed it as diverticulitis, and the pathology

report afterwards revealed the cancer. They took out 12 " of her

sigmoid colon and found 13 out of 14 lymph nodes were affected.

We had an appointment with an area research hospital for a

consultation and they suggested another CEA test, which five days

after the surgery was 120, to determine the appropriate course of

chemotheraphy. Due to lack of insurance, they would not treat her

there, but she has applied for Medicaid and we found a center that

would begin treatment.

She started her first session of 5fu/LV this past Monday. They ran

blood tests a week prior to that and her CEA had rose to 477. Last

Friday she had a CT scan and the report came back with four lesions

on her liver and other lymph nodes affected.

We go to see her doctor tomorrow for his interpretation of the CT

report and suggestions on her therapy or changes to it. I am well

aware of the use of CPT-11 and have done research online with regard

to it. It seems a very strong drug with multiple adverse side

affects. But I feel this is her only chance of beating this or

prolonging her life. She is 62 and has always been healthy prior to

this. I might add my grandma died of colon cancer a year and a half

ago.

My mom is in denial right now and is tending to sugar coat the

reality of what's happening. I am trying my best to be supportive,

research all about colon cancer and basically take care of things.

My reason for writing is getting opinions on taking CPT-11 and/or

finding alternative treatments out there. Of course a bit of support

for myself wouldn't be too bad.

[Guest guest]

Hi ,

So sorry to hear about your mom. But please know there are many

people successfully living with late stage cancer - I was diganosed

stage IV with multiple liver mets almost a year ago and I feel

perfectly fine today!

> We had an appointment with an area research hospital for a

> consultation

This is very good - I hope it's associated with a major cancer center

at a state university. I always tell people to be sure and get

" second/third/whatever " opinions from the BEST doctors out there.

> My reason for writing is getting opinions on taking CPT-11 and/or

> finding alternative treatments out there

5-FU + Leucovorin + Camptosar is currently the recommended treatment

for stage IV. HOWEVER, there are a few additional things I would

STRONGLY suggest looking into.

My first question would be: What is the SIZE of your mom's liver

mets? How many mets are OUTSIDE the liver? How big are they? If

some/all of these tumors are small enough, she may be a candidate for

some " non surgical " ablative techniques such as RF Ablation (heat

probe kills mets) or Stereotactic Radioablation (precise radiation

dose delivered to tumor conforms to tumor shape sparing healthy

tissue - I am in the process of doing this myself right now!). These

things could be done either IN ADDITION TO or IN PLACE OF

chemotherapy (and this is a REALLY HARD decision to make, no " right "

answer, different people in the SAME situation would decide different

things). As you've seen, some on this board have not had a " bad "

time with Camptosar, it differs for everyone. It does have a pretty

high response rate when combined with the " old " 5-FU (e.g. around

50%). 5-FU by itself does NOT have a good response rate (probably

under 15-20%), the ORAL form of 5-FU, called XELODA is better if

you're not going to be on Camptosar. It MAY even be better if you

ARE going to be on Camptosar but I do not think this has been proven

in clinical trials.

Best Wishes,

[Guest guest]

Thank you everyone for writing.

We went to her oncologist today to hear his interpretation of the

CT scan, and needless to say, it was quite different from mine or

even those in the family that I have read it to. I feel that he is

holding out hope for my mother and basically said we can't know what

the lesions on the liver mean unless further testing was done, but he

is not going to do that now. He also does not want to change the

course of therapy from the 5fu/LV. This is almost the opposite of

what the doctor at the consulatation said. The consultation was done

at Moffitt, which is the leading hospital in our area for cancer and

is associated with the local university (USF). I am somewhat

frustrated that he wants to wait eight weeks to see what the next CEA

test will bring, to see if the 5fu/LV are doing any good. He

mentioned that the CEA could have rose from 120 to 477 in six weeks

from other infection, sinus problems, everything under the sun versus

the cancer spreading. He said the lympth nodes that showed up could

be just infection and the four lesions on the liver nothing but

cysts. I am not in the medical profession, but I find that hard to

believe, as do others in my family that are in the medical

profession. He's nice, but I myself do not have much faith in him.

I feel the center he's associated with may be taking a conservative

approach whereas Moffitt would be more aggressive.

My mom is single and has her father (91), seven siblings, along with

my brother and I. My grandfather is a retired surgeon and

understands very well what is going on. One of my aunts has had

breast cancer and gall bladder cancer so she's big a big source of

information for me.

After the appointment today my mom has chosen to believe that the

lesions found on the CT scan are nothing more than cysts or hema

(somthing). I DO NOT want to take away her hope, but I'm more a

realist and feel we need to know the truth so all options can be

looked into. Needless to say, she's a bit frustrated with me. I

know this is her body, but this has been very hard on me too. I have

undertaken roles that I was not prepared to do. My brother and I are

faced with losing our mother in our early 30s. I am trying to learn

as much as I can so I am prepared for the next step.

[Guest guest]

- again my heart goes out to you, I only have a sister and we are both in our early thirties also faced with losing my mom. Love her as much as you can, appreciate everyday together.

Hugs,

Lucy

Re: Stage IV Colon Cancer -- mom

Thank you everyone for writing.

We went to her oncologist today to hear his interpretation of the

CT scan, and needless to say, it was quite different from mine or

even those in the family that I have read it to. I feel that he is

holding out hope for my mother and basically said we can't know what

the lesions on the liver mean unless further testing was done, but he

is not going to do that now. He also does not want to change the

course of therapy from the 5fu/LV. This is almost the opposite of

what the doctor at the consulatation said. The consultation was done

at Moffitt, which is the leading hospital in our area for cancer and

is associated with the local university (USF). I am somewhat

frustrated that he wants to wait eight weeks to see what the next CEA

test will bring, to see if the 5fu/LV are doing any good. He

mentioned that the CEA could have rose from 120 to 477 in six weeks

from other infection, sinus problems, everything under the sun versus

the cancer spreading. He said the lympth nodes that showed up could

be just infection and the four lesions on the liver nothing but

cysts. I am not in the medical profession, but I find that hard to

believe, as do others in my family that are in the medical

profession. He's nice, but I myself do not have much faith in him.

I feel the center he's associated with may be taking a conservative

approach whereas Moffitt would be more aggressive.

My mom is single and has her father (91), seven siblings, along with

my brother and I. My grandfather is a retired surgeon and

understands very well what is going on. One of my aunts has had

breast cancer and gall bladder cancer so she's big a big source of

information for me.

After the appointment today my mom has chosen to believe that the

lesions found on the CT scan are nothing more than cysts or hema

(somthing). I DO NOT want to take away her hope, but I'm more a

realist and feel we need to know the truth so all options can be

looked into. Needless to say, she's a bit frustrated with me. I

know this is her body, but this has been very hard on me too. I have

undertaken roles that I was not prepared to do. My brother and I are

faced with losing our mother in our early 30s. I am trying to learn

as much as I can so I am prepared for the next step.

[Guest guest]

Thank you everyone for writing.

We went to her oncologist today to hear his interpretation of the

CT scan, and needless to say, it was quite different from mine or

even those in the family that I have read it to. I feel that he is

holding out hope for my mother and basically said we can't know what

the lesions on the liver mean unless further testing was done, but he

is not going to do that now. He also does not want to change the

course of therapy from the 5fu/LV. This is almost the opposite of

what the doctor at the consulatation said. The consultation was done

at Moffitt, which is the leading hospital in our area for cancer and

is associated with the local university (USF). I am somewhat

frustrated that he wants to wait eight weeks to see what the next CEA

test will bring, to see if the 5fu/LV are doing any good. He

mentioned that the CEA could have rose from 120 to 477 in six weeks

from other infection, sinus problems, everything under the sun versus

the cancer spreading. He said the lympth nodes that showed up could

be just infection and the four lesions on the liver nothing but

cysts. I am not in the medical profession, but I find that hard to

believe, as do others in my family that are in the medical

profession. He's nice, but I myself do not have much faith in him.

I feel the center he's associated with may be taking a conservative

approach whereas Moffitt would be more aggressive.

My mom is single and has her father (91), seven siblings, along with

my brother and I. My grandfather is a retired surgeon and

understands very well what is going on. One of my aunts has had

breast cancer and gall bladder cancer so she's big a big source of

information for me.

After the appointment today my mom has chosen to believe that the

lesions found on the CT scan are nothing more than cysts or hema

(somthing). I DO NOT want to take away her hope, but I'm more a

realist and feel we need to know the truth so all options can be

looked into. Needless to say, she's a bit frustrated with me. I

know this is her body, but this has been very hard on me too. I have

undertaken roles that I was not prepared to do. My brother and I are

faced with losing our mother in our early 30s. I am trying to learn

as much as I can so I am prepared for the next step.

[Guest guest]

Oops, please ignore the previous post. I tried to refresh the page

and it posted my previous message instead.

, it's encouraging to hear that you are still leading an

active life while taking CPT-11. I'm sure age has something to do

with it, but my mom has been healthy, so maybe she would respond to

it well. My apprehension in waiting is if the CEA went from 120 to

477 in six weeks, and at the time of surgery they thought the liver

was clear, but now it has four lesions, something has happened. If

we wait eight weeks to think about CPT-11 it might be too late.

My family has been very supportive to both my mother and I. They

all know that I have my mom's best interest at heart and is driving

me to do what I have done. Due to lack of insurance, I applied to

Medicaid for her and set up the appointments. I have sold what stock

she had, found a condo for her, closed on the condo, painted the new

place, had carpet put in, did most of her packing and scheduled the

movers. We had a consultation for a second opinion, gathered up

medical records and sent them to where they needed to go. Between my

brother and I, we are paying her expenses since she is not working.

Everyday I am on the phone doing something for her, online looking

for info, relaying information to relatives. It's been very

exhausting. My energy has come in knowing that I am doing good

things for her and helping her out.

Sometimes I think if my mom had had a colonoscopy a year and a half

ago when her mother died of this disease, things wouldn't be so

tragic now. I have learned that lesson and have an appointment in

March with an gastroenterologist. I have also scheduled other

testing appropriate for my age.

I guess all I can do now is continue to keep myself informed and

provide support for her where I can. I will respect any decision she

makes, but I do believe she needs to be full informed to make an

intelligent decision. I'm not sure if I mentioned this earlier, but

my mom is an RN, so she does understand the terminology, which is

another reason I feel she's denying what's going on.

[Guest guest]

What has been the result of this please?

Is your mom single/widowed? Is she in this alone other than you?

Thanks

Rayla

-------Original Message-------

They took out 12" of her sigmoid colon

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

thank you SO much for this site !!!!!!!

(and I agree that the mom is being strong and not in denail)

Rayla

----- Original Message ----- Here is 's site that will answer many of your questions. He is our guru and has helped all of us immensely http://ourworld.compuserve.com/homepages/suthercon/