Re: Who is a stage 4 survivor?

[Guest guest]

Hi Susie

We have been battling the beast since June 19 2003.

I am sorry to hear of all the people in your life with cancer especially your

little girl.

My brother had a Wilm's Tumor w/ lung mets at 3 and is a cancer survivor now

37 years old. I hope your daughter does that well and better.

As for your brother in law. For stage 4 inopperable I was unaware that they

could do radiation so maybe you can inform us there.

The usual protocol is 5FU, Leucovorin and Oxilaplatin (known as FOXIL) though

the Oxilaplatin could be dropped in favor of newer drugs like Erbitux or

Avastin. Chemo is the typical route followed by surgery if it becomes possible.

My husband is also stage 4 with similar progression. He is recieving the

FOXIL + Acastin treatment with 5FU administered via 46 hour pump. Other than

mouth

sores and flu like symptoms on chemo day he feels good and eats what he

wants. He dropped 30lbs. last summer going from 165 to a mere 135 but has gained

it

all back. (see below for history)

He works full time as pastor to a Lutheran Church and over the past year we

have vacationed in Sturbridge, MA, burg, VA and Montreal, Canada. He

hasn't really slowed down much except in the early weeks of the disease. He

feels THAT good.

I can't tell you how things will go for your brother in law only that it

looks is if we are getting closer to finding the answers to beating this thing.

In

the meantime it is possible to have this and live a good quality of life.

With lots of prayer and support and a possitive attitude he can fight this

thing and God willing beat it.

Narice

caregiver to Phil

diagnosed June 19, 2003

Stage 4 with multiple liver mets (Initially thought to be pancreatic)

July 2003- Severe swelling, Some Jaundice PCP tells us NOT to

seek treatment.

We begin treatment with Dr. Jan Rothman

at Regional Cancer Center Erie, PA

5FU, Leucovorin, Oxilaplatin

August 2003- Phil's weight drops from 165 to 135

September 2003- Phil goes off diuretic (oops)

In late September he has CT showing

significant

reduction of tumor. ;-)

December 2003- Tumor stable side effects so far are minimal some flu

like symptoms with the Oxilaplatin, dry chapped

hands

and occasional nausea

March 2004- Weight gain of 20 lbs (fluctuates between 155-160)

Tumor still stable, (13 cm in colon multiple liver

mets. Largest being 9 cm

April 2004 1 month chemo break YIPEEE!!!!!

April 21,2004- Phil starts on new chemo 5 FU, Leucovorin, Oxaliplatin

AND Avastin via 46 HR pump. Weight 160.

4/23 Mouth sores developUsing *magic mouthwash*.

CEA 2.5 down from 3.5 before Avastin

Low red & white counts

Dr. states *You could be the poster person for chemo response, when I first

saw you in the hospital last June 2003 I practically had to 'scrape you off

the wall.' " :->

5/17/04 Red & white counts normalized. Platelet count down to 88,000

(normal 150,000. Chemo postponed for 1st time since diagnosi5/24 weight 160

All blood counts at or near normal. Platelets at 122,000

June 2004 One year and still here

Chemo June 17 Severe mouth sores develop platelets drop to 49,000 150,000

normal White counts drops to .09! Normal is 4.5

Starts week of Neuprogen to boost white count on July 1

7/7/04 Blood Counts normal chemo resumes

July 2004 CHEMO BREAK yipeee!!!!!

8/3/04 Chemo resumes FOXIL + Avastin

Bleeding gums (probably due to dental work), dark urine

resolved by week's end. Blood counts still normal

God's blessings to all on this journey!

[Guest guest]

Hi Susie

We have been battling the beast since June 19 2003.

I am sorry to hear of all the people in your life with cancer especially your

little girl.

My brother had a Wilm's Tumor w/ lung mets at 3 and is a cancer survivor now

37 years old. I hope your daughter does that well and better.

As for your brother in law. For stage 4 inopperable I was unaware that they

could do radiation so maybe you can inform us there.

The usual protocol is 5FU, Leucovorin and Oxilaplatin (known as FOXIL) though

the Oxilaplatin could be dropped in favor of newer drugs like Erbitux or

Avastin. Chemo is the typical route followed by surgery if it becomes possible.

My husband is also stage 4 with similar progression. He is recieving the

FOXIL + Acastin treatment with 5FU administered via 46 hour pump. Other than

mouth

sores and flu like symptoms on chemo day he feels good and eats what he

wants. He dropped 30lbs. last summer going from 165 to a mere 135 but has gained

it

all back. (see below for history)

He works full time as pastor to a Lutheran Church and over the past year we

have vacationed in Sturbridge, MA, burg, VA and Montreal, Canada. He

hasn't really slowed down much except in the early weeks of the disease. He

feels THAT good.

I can't tell you how things will go for your brother in law only that it

looks is if we are getting closer to finding the answers to beating this thing.

In

the meantime it is possible to have this and live a good quality of life.

With lots of prayer and support and a possitive attitude he can fight this

thing and God willing beat it.

Narice

caregiver to Phil

diagnosed June 19, 2003

Stage 4 with multiple liver mets (Initially thought to be pancreatic)

July 2003- Severe swelling, Some Jaundice PCP tells us NOT to

seek treatment.

We begin treatment with Dr. Jan Rothman

at Regional Cancer Center Erie, PA

5FU, Leucovorin, Oxilaplatin

August 2003- Phil's weight drops from 165 to 135

September 2003- Phil goes off diuretic (oops)

In late September he has CT showing

significant

reduction of tumor. ;-)

December 2003- Tumor stable side effects so far are minimal some flu

like symptoms with the Oxilaplatin, dry chapped

hands

and occasional nausea

March 2004- Weight gain of 20 lbs (fluctuates between 155-160)

Tumor still stable, (13 cm in colon multiple liver

mets. Largest being 9 cm

April 2004 1 month chemo break YIPEEE!!!!!

April 21,2004- Phil starts on new chemo 5 FU, Leucovorin, Oxaliplatin

AND Avastin via 46 HR pump. Weight 160.

4/23 Mouth sores developUsing *magic mouthwash*.

CEA 2.5 down from 3.5 before Avastin

Low red & white counts

Dr. states *You could be the poster person for chemo response, when I first

saw you in the hospital last June 2003 I practically had to 'scrape you off

the wall.' " :->

5/17/04 Red & white counts normalized. Platelet count down to 88,000

(normal 150,000. Chemo postponed for 1st time since diagnosi5/24 weight 160

All blood counts at or near normal. Platelets at 122,000

June 2004 One year and still here

Chemo June 17 Severe mouth sores develop platelets drop to 49,000 150,000

normal White counts drops to .09! Normal is 4.5

Starts week of Neuprogen to boost white count on July 1

7/7/04 Blood Counts normal chemo resumes

July 2004 CHEMO BREAK yipeee!!!!!

8/3/04 Chemo resumes FOXIL + Avastin

Bleeding gums (probably due to dental work), dark urine

resolved by week's end. Blood counts still normal

God's blessings to all on this journey!

[Guest guest]

Hi Susie

We have been battling the beast since June 19 2003.

I am sorry to hear of all the people in your life with cancer especially your

little girl.

My brother had a Wilm's Tumor w/ lung mets at 3 and is a cancer survivor now

37 years old. I hope your daughter does that well and better.

As for your brother in law. For stage 4 inopperable I was unaware that they

could do radiation so maybe you can inform us there.

The usual protocol is 5FU, Leucovorin and Oxilaplatin (known as FOXIL) though

the Oxilaplatin could be dropped in favor of newer drugs like Erbitux or

Avastin. Chemo is the typical route followed by surgery if it becomes possible.

My husband is also stage 4 with similar progression. He is recieving the

FOXIL + Acastin treatment with 5FU administered via 46 hour pump. Other than

mouth

sores and flu like symptoms on chemo day he feels good and eats what he

wants. He dropped 30lbs. last summer going from 165 to a mere 135 but has gained

it

all back. (see below for history)

He works full time as pastor to a Lutheran Church and over the past year we

have vacationed in Sturbridge, MA, burg, VA and Montreal, Canada. He

hasn't really slowed down much except in the early weeks of the disease. He

feels THAT good.

I can't tell you how things will go for your brother in law only that it

looks is if we are getting closer to finding the answers to beating this thing.

In

the meantime it is possible to have this and live a good quality of life.

With lots of prayer and support and a possitive attitude he can fight this

thing and God willing beat it.

Narice

caregiver to Phil

diagnosed June 19, 2003

Stage 4 with multiple liver mets (Initially thought to be pancreatic)

July 2003- Severe swelling, Some Jaundice PCP tells us NOT to

seek treatment.

We begin treatment with Dr. Jan Rothman

at Regional Cancer Center Erie, PA

5FU, Leucovorin, Oxilaplatin

August 2003- Phil's weight drops from 165 to 135

September 2003- Phil goes off diuretic (oops)

In late September he has CT showing

significant

reduction of tumor. ;-)

December 2003- Tumor stable side effects so far are minimal some flu

like symptoms with the Oxilaplatin, dry chapped

hands

and occasional nausea

March 2004- Weight gain of 20 lbs (fluctuates between 155-160)

Tumor still stable, (13 cm in colon multiple liver

mets. Largest being 9 cm

April 2004 1 month chemo break YIPEEE!!!!!

April 21,2004- Phil starts on new chemo 5 FU, Leucovorin, Oxaliplatin

AND Avastin via 46 HR pump. Weight 160.

4/23 Mouth sores developUsing *magic mouthwash*.

CEA 2.5 down from 3.5 before Avastin

Low red & white counts

Dr. states *You could be the poster person for chemo response, when I first

saw you in the hospital last June 2003 I practically had to 'scrape you off

the wall.' " :->

5/17/04 Red & white counts normalized. Platelet count down to 88,000

(normal 150,000. Chemo postponed for 1st time since diagnosi5/24 weight 160

All blood counts at or near normal. Platelets at 122,000

June 2004 One year and still here

Chemo June 17 Severe mouth sores develop platelets drop to 49,000 150,000

normal White counts drops to .09! Normal is 4.5

Starts week of Neuprogen to boost white count on July 1

7/7/04 Blood Counts normal chemo resumes

July 2004 CHEMO BREAK yipeee!!!!!

8/3/04 Chemo resumes FOXIL + Avastin

Bleeding gums (probably due to dental work), dark urine

resolved by week's end. Blood counts still normal

God's blessings to all on this journey!

[Guest guest]

Curt's is operable but, they are doing rediation/chemo first. He will do 6

weeks radiation along with a 5fu pack he wears 24/7 for 5 weeks. Every other

week he goes in for a dose of the oxiplatin. They said after surgery then he

will do the " real chemo " . THANKS!

Re: Who is a stage 4 survivor?

Hi Susie

We have been battling the beast since June 19 2003.

I am sorry to hear of all the people in your life with cancer especially your

little girl.

My brother had a Wilm's Tumor w/ lung mets at 3 and is a cancer survivor now

37 years old. I hope your daughter does that well and better.

As for your brother in law. For stage 4 inopperable I was unaware that they

could do radiation so maybe you can inform us there.

The usual protocol is 5FU, Leucovorin and Oxilaplatin (known as FOXIL) though

the Oxilaplatin could be dropped in favor of newer drugs like Erbitux or

Avastin. Chemo is the typical route followed by surgery if it becomes

possible.

My husband is also stage 4 with similar progression. He is recieving the

FOXIL + Acastin treatment with 5FU administered via 46 hour pump. Other than

mouth

sores and flu like symptoms on chemo day he feels good and eats what he

wants. He dropped 30lbs. last summer going from 165 to a mere 135 but has

gained it

all back. (see below for history)

He works full time as pastor to a Lutheran Church and over the past year we

have vacationed in Sturbridge, MA, burg, VA and Montreal, Canada. He

hasn't really slowed down much except in the early weeks of the disease. He

feels THAT good.

I can't tell you how things will go for your brother in law only that it

looks is if we are getting closer to finding the answers to beating this

thing. In

the meantime it is possible to have this and live a good quality of life.

With lots of prayer and support and a possitive attitude he can fight this

thing and God willing beat it.

Narice

caregiver to Phil

diagnosed June 19, 2003

Stage 4 with multiple liver mets (Initially thought to be pancreatic)

July 2003- Severe swelling, Some Jaundice PCP tells us NOT to

seek treatment.

We begin treatment with Dr. Jan Rothman

at Regional Cancer Center Erie, PA

5FU, Leucovorin, Oxilaplatin

August 2003- Phil's weight drops from 165 to 135

September 2003- Phil goes off diuretic (oops)

In late September he has CT showing

significant

reduction of tumor. ;-)

December 2003- Tumor stable side effects so far are minimal some flu

like symptoms with the Oxilaplatin, dry chapped

hands

and occasional nausea

March 2004- Weight gain of 20 lbs (fluctuates between 155-160)

Tumor still stable, (13 cm in colon multiple liver

mets. Largest being 9 cm

April 2004 1 month chemo break YIPEEE!!!!!

April 21,2004- Phil starts on new chemo 5 FU, Leucovorin, Oxaliplatin

AND Avastin via 46 HR pump. Weight 160.

4/23 Mouth sores developUsing *magic mouthwash*.

CEA 2.5 down from 3.5 before Avastin

Low red & white counts

Dr. states *You could be the poster person for chemo response, when I first

saw you in the hospital last June 2003 I practically had to 'scrape you off

the wall.' " :->

5/17/04 Red & white counts normalized. Platelet count down to 88,000

(normal 150,000. Chemo postponed for 1st time since diagnosi5/24 weight 160

All blood counts at or near normal. Platelets at 122,000

June 2004 One year and still here

Chemo June 17 Severe mouth sores develop platelets drop to 49,000 150,000

normal White counts drops to .09! Normal is 4.5

Starts week of Neuprogen to boost white count on July 1

7/7/04 Blood Counts normal chemo resumes

July 2004 CHEMO BREAK yipeee!!!!!

8/3/04 Chemo resumes FOXIL + Avastin

Bleeding gums (probably due to dental work), dark urine

resolved by week's end. Blood counts still normal

God's blessings to all on this journey!

[Guest guest]

Curt's is operable but, they are doing rediation/chemo first. He will do 6

weeks radiation along with a 5fu pack he wears 24/7 for 5 weeks. Every other

week he goes in for a dose of the oxiplatin. They said after surgery then he

will do the " real chemo " . THANKS!

Re: Who is a stage 4 survivor?

Hi Susie

We have been battling the beast since June 19 2003.

I am sorry to hear of all the people in your life with cancer especially your

little girl.

My brother had a Wilm's Tumor w/ lung mets at 3 and is a cancer survivor now

37 years old. I hope your daughter does that well and better.

As for your brother in law. For stage 4 inopperable I was unaware that they

could do radiation so maybe you can inform us there.

The usual protocol is 5FU, Leucovorin and Oxilaplatin (known as FOXIL) though

the Oxilaplatin could be dropped in favor of newer drugs like Erbitux or

Avastin. Chemo is the typical route followed by surgery if it becomes

possible.

My husband is also stage 4 with similar progression. He is recieving the

FOXIL + Acastin treatment with 5FU administered via 46 hour pump. Other than

mouth

sores and flu like symptoms on chemo day he feels good and eats what he

wants. He dropped 30lbs. last summer going from 165 to a mere 135 but has

gained it

all back. (see below for history)

He works full time as pastor to a Lutheran Church and over the past year we

have vacationed in Sturbridge, MA, burg, VA and Montreal, Canada. He

hasn't really slowed down much except in the early weeks of the disease. He

feels THAT good.

I can't tell you how things will go for your brother in law only that it

looks is if we are getting closer to finding the answers to beating this

thing. In

the meantime it is possible to have this and live a good quality of life.

With lots of prayer and support and a possitive attitude he can fight this

thing and God willing beat it.

Narice

caregiver to Phil

diagnosed June 19, 2003

Stage 4 with multiple liver mets (Initially thought to be pancreatic)

July 2003- Severe swelling, Some Jaundice PCP tells us NOT to

seek treatment.

We begin treatment with Dr. Jan Rothman

at Regional Cancer Center Erie, PA

5FU, Leucovorin, Oxilaplatin

August 2003- Phil's weight drops from 165 to 135

September 2003- Phil goes off diuretic (oops)

In late September he has CT showing

significant

reduction of tumor. ;-)

December 2003- Tumor stable side effects so far are minimal some flu

like symptoms with the Oxilaplatin, dry chapped

hands

and occasional nausea

March 2004- Weight gain of 20 lbs (fluctuates between 155-160)

Tumor still stable, (13 cm in colon multiple liver

mets. Largest being 9 cm

April 2004 1 month chemo break YIPEEE!!!!!

April 21,2004- Phil starts on new chemo 5 FU, Leucovorin, Oxaliplatin

AND Avastin via 46 HR pump. Weight 160.

4/23 Mouth sores developUsing *magic mouthwash*.

CEA 2.5 down from 3.5 before Avastin

Low red & white counts

Dr. states *You could be the poster person for chemo response, when I first

saw you in the hospital last June 2003 I practically had to 'scrape you off

the wall.' " :->

5/17/04 Red & white counts normalized. Platelet count down to 88,000

(normal 150,000. Chemo postponed for 1st time since diagnosi5/24 weight 160

All blood counts at or near normal. Platelets at 122,000

June 2004 One year and still here

Chemo June 17 Severe mouth sores develop platelets drop to 49,000 150,000

normal White counts drops to .09! Normal is 4.5

Starts week of Neuprogen to boost white count on July 1

7/7/04 Blood Counts normal chemo resumes

July 2004 CHEMO BREAK yipeee!!!!!

8/3/04 Chemo resumes FOXIL + Avastin

Bleeding gums (probably due to dental work), dark urine

resolved by week's end. Blood counts still normal

God's blessings to all on this journey!

[Guest guest]

Curt's is operable but, they are doing rediation/chemo first. He will do 6

weeks radiation along with a 5fu pack he wears 24/7 for 5 weeks. Every other

week he goes in for a dose of the oxiplatin. They said after surgery then he

will do the " real chemo " . THANKS!

Re: Who is a stage 4 survivor?

Hi Susie

We have been battling the beast since June 19 2003.

I am sorry to hear of all the people in your life with cancer especially your

little girl.

My brother had a Wilm's Tumor w/ lung mets at 3 and is a cancer survivor now

37 years old. I hope your daughter does that well and better.

As for your brother in law. For stage 4 inopperable I was unaware that they

could do radiation so maybe you can inform us there.

The usual protocol is 5FU, Leucovorin and Oxilaplatin (known as FOXIL) though

the Oxilaplatin could be dropped in favor of newer drugs like Erbitux or

Avastin. Chemo is the typical route followed by surgery if it becomes

possible.

My husband is also stage 4 with similar progression. He is recieving the

FOXIL + Acastin treatment with 5FU administered via 46 hour pump. Other than

mouth

sores and flu like symptoms on chemo day he feels good and eats what he

wants. He dropped 30lbs. last summer going from 165 to a mere 135 but has

gained it

all back. (see below for history)

He works full time as pastor to a Lutheran Church and over the past year we

have vacationed in Sturbridge, MA, burg, VA and Montreal, Canada. He

hasn't really slowed down much except in the early weeks of the disease. He

feels THAT good.

I can't tell you how things will go for your brother in law only that it

looks is if we are getting closer to finding the answers to beating this

thing. In

the meantime it is possible to have this and live a good quality of life.

With lots of prayer and support and a possitive attitude he can fight this

thing and God willing beat it.

Narice

caregiver to Phil

diagnosed June 19, 2003

Stage 4 with multiple liver mets (Initially thought to be pancreatic)

July 2003- Severe swelling, Some Jaundice PCP tells us NOT to

seek treatment.

We begin treatment with Dr. Jan Rothman

at Regional Cancer Center Erie, PA

5FU, Leucovorin, Oxilaplatin

August 2003- Phil's weight drops from 165 to 135

September 2003- Phil goes off diuretic (oops)

In late September he has CT showing

significant

reduction of tumor. ;-)

December 2003- Tumor stable side effects so far are minimal some flu

like symptoms with the Oxilaplatin, dry chapped

hands

and occasional nausea

March 2004- Weight gain of 20 lbs (fluctuates between 155-160)

Tumor still stable, (13 cm in colon multiple liver

mets. Largest being 9 cm

April 2004 1 month chemo break YIPEEE!!!!!

April 21,2004- Phil starts on new chemo 5 FU, Leucovorin, Oxaliplatin

AND Avastin via 46 HR pump. Weight 160.

4/23 Mouth sores developUsing *magic mouthwash*.

CEA 2.5 down from 3.5 before Avastin

Low red & white counts

Dr. states *You could be the poster person for chemo response, when I first

saw you in the hospital last June 2003 I practically had to 'scrape you off

the wall.' " :->

5/17/04 Red & white counts normalized. Platelet count down to 88,000

(normal 150,000. Chemo postponed for 1st time since diagnosi5/24 weight 160

All blood counts at or near normal. Platelets at 122,000

June 2004 One year and still here

Chemo June 17 Severe mouth sores develop platelets drop to 49,000 150,000

normal White counts drops to .09! Normal is 4.5

Starts week of Neuprogen to boost white count on July 1

7/7/04 Blood Counts normal chemo resumes

July 2004 CHEMO BREAK yipeee!!!!!

8/3/04 Chemo resumes FOXIL + Avastin

Bleeding gums (probably due to dental work), dark urine

resolved by week's end. Blood counts still normal

God's blessings to all on this journey!

[Guest guest]

Susie,

Go to the following link:

http://www.ccalliance.org/patient/personal/stories_stage4.html

I was inspired by some of the stories when I was first diagnosed;

frankly, I still am six months later. What is happening sounds

about right - I know where he is coming from, as I have Stage IV and

kids that are 12, 9, 6, and 3. To boot, I missed a year and a half

of the 3 year olds life while deployed to Korea with the military.

There are Stage IV survivors...you might also suggest something - if

the docs have not mentioned it - maybe bring up a visit to a genetic

specialist to see if he carries the HNPCC mutation - he sounds

young - that way he and your sister will know if their child and his

sibblings are at risk and can therefore prevent it from ever

happening to them.

Best

Joe

> Let me start by saying that Curt, my brother in law is not my

first

> experience with cancer. My daughter who is now 8 was diagnosed

with

> cancer at the age of 18 months and my sister (Curt's wife) was

> diagnosed with breast cancer at the age of 32. So when Curt was

> diagnosed with stage 4 rectal cancer I knew that meant trouble. I

> have researched the odds etc...and have told Curt that there are

> people out there beating this damn desease. I am so sick of

cancer

> though and am so sick of worring about another person I love

having

> cancer. I want him to beat this so bad. I look at him and he is

in

> pain from only one week of radiation and walking around hooked up

to

> chemo and it just sucks. They have a 2 year old that he is scared

> to death that he won't see her grow up. All normal feelings. I

> just want to get a feel for how people with more advanced rectal

> cancer are handling things. Thank you for letting me ramble. You

> guys are a great group. So far it sounds like after 4-5 weeks of

> radation they will re-scan him and then do from there...does that

> sound right? His primary tumor is 16 cm and he has mets to the

> liver (2 lesions) and the pretinium area (several small lesions)

and

> 4-6 lymph nodes.

>

> Susie