Re: A story of never giving up hope

February 18, 2004

Joyce,

Question: Will continue to take Xeloda? My brother is on Xeloda

along with Oxalplatin and he has hand/food syndrome really bad, sick, sick,

sick...to the point that he is almost ready to quit..so I need ammunition to get

him

to stay at least with " something. "

Brother dx 10/01, Stage III, resection-- 5FU/Lev for 6 mos, recurrent 9/03.

That's great news for you and your husband.

Cheers,

Gurlstar (Betty)

February 18, 2004

Joyce,

Question: Will continue to take Xeloda? My brother is on Xeloda

along with Oxalplatin and he has hand/food syndrome really bad, sick, sick,

sick...to the point that he is almost ready to quit..so I need ammunition to get

him

to stay at least with " something. "

Brother dx 10/01, Stage III, resection-- 5FU/Lev for 6 mos, recurrent 9/03.

That's great news for you and your husband.

Cheers,

Gurlstar (Betty)

February 18, 2004

Joyce:

Your story was worth taking the time to read. I am so happy for both

of you! It is such good news and so inspirational! It is so true to

keep on searching and trying new approaches and finding the one that

works. Your story is a testament to that!

When you get this extra time, it is such a gift.

Enjoy!

Hugs and blue skies,

Amie

February 18, 2004

Joyce:

Your story was worth taking the time to read. I am so happy for both

of you! It is such good news and so inspirational! It is so true to

keep on searching and trying new approaches and finding the one that

works. Your story is a testament to that!

When you get this extra time, it is such a gift.

Enjoy!

Hugs and blue skies,

Amie

February 18, 2004

Joyce:

Your story was worth taking the time to read. I am so happy for both

of you! It is such good news and so inspirational! It is so true to

keep on searching and trying new approaches and finding the one that

works. Your story is a testament to that!

When you get this extra time, it is such a gift.

Enjoy!

Hugs and blue skies,

Amie

February 18, 2004

Thank you Joyce!! I'm not sure I had ever read the " whole story "

about ...........I didn't realize he had NO LYMPH NODE

involvement. :-o Man! And it STILL came back??? Well, thank God

for happy endings .............. even though your journey is

ongoing ........ at least it's " ongoing " in the right direction

now!! Thank you so much for reminding us that things are not always

as they seem and that we should remain positive. )

Donna S.

> Hi Everyone,

> Monday I came to the site to post about our visit with the

> Oncologist after our 6 week vacation. As some of you might recall

> we almost lost the last week of November. For about 4 weeks

> he was very sick. Running fever of up to 104, taking Lortabs every

> 2 hours and Morphine twice a day for pain. He did not eat for

about

> 2 weeks and was hurting so bad that he could not sit, stand and

only

> lay in bed in one position. For those of you that do not know our

> situation he is stage 4 with mets to the lungs. He also had a very

> bad ulceration in the rectum at the site of the original surgery.

> He developed a fistula that bonded to the bladder and fought that

> battle and won, but could not ever get rid of the pain in the

> rectum. All his doctors strongly advised him to get a colostomy.

> After 3 1/2 yrs of being confined to the house and not being able

to

> eat what he like and suffering the pain if he did, he finally wound

> up in the hospital close to death. His blood pressure was 80/40

and

> was given transfusions, plasma, and lots of IV antibiotic to

> stabilize him. On day 3 they did the colostomy and gave us our

> famous six week vacation from any further treatment.

> When I came to the site Monday and read out Kim, Tam, and Maeve's

> bad news I just could not write my post. I also had a's Mom on

> my mind. Last night I received a email from a lady on this site

> asking about us and she thinks I should share our news because it

is

> news with some encouragment in it. I kicked it back and forth and

> agree with her. This is a long post so please bear with me because

> I am not good in putting my feeling into writing. It's going to be

> 4 years in July since we started this battle and my every waking

> moment is spent with my husband on my mind. There have been

night's

> that I stayed on this computer all night researching new treatment

> for this horrible disease. There have been people close to me that

> have told me to stay off the dam computer because I am just

> upsetting myself. Being my stubborn self I listened to no one and

> kept on looking. I know some of you are wondering where I am going

> with this. I am not patting myself on the back, believe me. What

I

> am trying to say is that thru this computer and sites such as this

I

> found out about RFA and IMRT.

> We were told that was cured after his colorectal surgery.

He

> had 24 lymph nodes taken and all were clean. We even asked our

> PREVIOUS Onc. for follow up chemo and he said it was not

necessary.

> One year later it was back in the lung. I called surgeons all over

> the US and checked on a precedure called VATS, but in the end we

> went with the traditional surgery. One year later the same tumor

> was back and thats when I used my research about RFA and approached

> the Oncologist with that option. He was willing to work with us

and

> found Dr. Nielson for us. The RFA was done and one year

later

> back to square one with the same tumor. I then researched IMRT on

> the lung and we were fortunate that it could be done at CTRC in San

> where our Onc is located. He had three treatments done in

> October 2003 and was continuing the Xeloda. At about that time the

> rectal pain set in and you already know the rest.

> We had his blood work and CEA done a week before our Monday

> appointment and then lost a lot of sleep in anticipation of Mondays

> appt.

> Here is the good part of the story!!! Both nurses came in with

> grins on their faces and we could not figure out what was going

on.

> They fessed up and said the CEA was down again. Thank God we were

> sitting down because I totally lost it. had already made

the

> decision NO more chemo if it was going to be the drip method. In

> came the Onc and jumped up and told him his feelings and

that

> he was ready for it to be in God's hands now. The Onc popped the

> two latest PET scans on the board and told us to take a look

because

> it was amazing!!!! The first Pet had a very dark intense tumor on

> it and the second had a smaller and very light gray spot. The Onc

> said he would call the Radiologist downstairs and see if they

> thought the tumor was still dying off or if they should proceed

with

> a few more treatments.

> The other good news is they are already starting to receive

Eributux

> but that is not for . He is giving us another " 3 month "

> vacation and hopefully by that time he will have the Avastin and he

> will let take it with the Xeloda. I asked if Avastin comes

> in pill form and he said no. There are other things that are in

> pill form like Avastin but would rather wait for the Avastin.

> Let me apologize for my long post again, but for the newbies I

> thought it was important.

> and I are not stupid and know our roller coaster ride is not

> over but it is buying precious time for me and my Best Friend.

> Tomorrow he gets a colonoscopy and then he is off to the Coast with

> his beloved Air Boat!!!!

> The moral of my story is PLEASE folks, never never never give up

> hope. Never pay attention to anyone critizing you for spending too

> much time on the internet researching, because I trully believe in

> my heart that if I had not had my amunition for our appointments

> may not be here today. It has all been a gamble that has

> paid off so far.

> God Bless you All,

> Joyce

February 18, 2004

Thank you Joyce!! I'm not sure I had ever read the " whole story "

about ...........I didn't realize he had NO LYMPH NODE

involvement. :-o Man! And it STILL came back??? Well, thank God

for happy endings .............. even though your journey is

ongoing ........ at least it's " ongoing " in the right direction

now!! Thank you so much for reminding us that things are not always

as they seem and that we should remain positive. )

Donna S.

> Hi Everyone,

> Monday I came to the site to post about our visit with the

> Oncologist after our 6 week vacation. As some of you might recall

> we almost lost the last week of November. For about 4 weeks

> he was very sick. Running fever of up to 104, taking Lortabs every

> 2 hours and Morphine twice a day for pain. He did not eat for

about

> 2 weeks and was hurting so bad that he could not sit, stand and

only

> lay in bed in one position. For those of you that do not know our

> situation he is stage 4 with mets to the lungs. He also had a very

> bad ulceration in the rectum at the site of the original surgery.

> He developed a fistula that bonded to the bladder and fought that

> battle and won, but could not ever get rid of the pain in the

> rectum. All his doctors strongly advised him to get a colostomy.

> After 3 1/2 yrs of being confined to the house and not being able

to

> eat what he like and suffering the pain if he did, he finally wound

> up in the hospital close to death. His blood pressure was 80/40

and

> was given transfusions, plasma, and lots of IV antibiotic to

> stabilize him. On day 3 they did the colostomy and gave us our

> famous six week vacation from any further treatment.

> When I came to the site Monday and read out Kim, Tam, and Maeve's

> bad news I just could not write my post. I also had a's Mom on

> my mind. Last night I received a email from a lady on this site

> asking about us and she thinks I should share our news because it

is

> news with some encouragment in it. I kicked it back and forth and

> agree with her. This is a long post so please bear with me because

> I am not good in putting my feeling into writing. It's going to be

> 4 years in July since we started this battle and my every waking

> moment is spent with my husband on my mind. There have been

night's

> that I stayed on this computer all night researching new treatment

> for this horrible disease. There have been people close to me that

> have told me to stay off the dam computer because I am just

> upsetting myself. Being my stubborn self I listened to no one and

> kept on looking. I know some of you are wondering where I am going

> with this. I am not patting myself on the back, believe me. What

I

> am trying to say is that thru this computer and sites such as this

I

> found out about RFA and IMRT.

> We were told that was cured after his colorectal surgery.

He

> had 24 lymph nodes taken and all were clean. We even asked our

> PREVIOUS Onc. for follow up chemo and he said it was not

necessary.

> One year later it was back in the lung. I called surgeons all over

> the US and checked on a precedure called VATS, but in the end we

> went with the traditional surgery. One year later the same tumor

> was back and thats when I used my research about RFA and approached

> the Oncologist with that option. He was willing to work with us

and

> found Dr. Nielson for us. The RFA was done and one year

later

> back to square one with the same tumor. I then researched IMRT on

> the lung and we were fortunate that it could be done at CTRC in San

> where our Onc is located. He had three treatments done in

> October 2003 and was continuing the Xeloda. At about that time the

> rectal pain set in and you already know the rest.

> We had his blood work and CEA done a week before our Monday

> appointment and then lost a lot of sleep in anticipation of Mondays

> appt.

> Here is the good part of the story!!! Both nurses came in with

> grins on their faces and we could not figure out what was going

on.

> They fessed up and said the CEA was down again. Thank God we were

> sitting down because I totally lost it. had already made

the

> decision NO more chemo if it was going to be the drip method. In

> came the Onc and jumped up and told him his feelings and

that

> he was ready for it to be in God's hands now. The Onc popped the

> two latest PET scans on the board and told us to take a look

because

> it was amazing!!!! The first Pet had a very dark intense tumor on

> it and the second had a smaller and very light gray spot. The Onc

> said he would call the Radiologist downstairs and see if they

> thought the tumor was still dying off or if they should proceed

with

> a few more treatments.

> The other good news is they are already starting to receive

Eributux

> but that is not for . He is giving us another " 3 month "

> vacation and hopefully by that time he will have the Avastin and he

> will let take it with the Xeloda. I asked if Avastin comes

> in pill form and he said no. There are other things that are in

> pill form like Avastin but would rather wait for the Avastin.

> Let me apologize for my long post again, but for the newbies I

> thought it was important.

> and I are not stupid and know our roller coaster ride is not

> over but it is buying precious time for me and my Best Friend.

> Tomorrow he gets a colonoscopy and then he is off to the Coast with

> his beloved Air Boat!!!!

> The moral of my story is PLEASE folks, never never never give up

> hope. Never pay attention to anyone critizing you for spending too

> much time on the internet researching, because I trully believe in

> my heart that if I had not had my amunition for our appointments

> may not be here today. It has all been a gamble that has

> paid off so far.

> God Bless you All,

> Joyce

February 18, 2004

Thank you Joyce!! I'm not sure I had ever read the " whole story "

about ...........I didn't realize he had NO LYMPH NODE

involvement. :-o Man! And it STILL came back??? Well, thank God

for happy endings .............. even though your journey is

ongoing ........ at least it's " ongoing " in the right direction

now!! Thank you so much for reminding us that things are not always

as they seem and that we should remain positive. )

Donna S.

> Hi Everyone,

> Monday I came to the site to post about our visit with the

> Oncologist after our 6 week vacation. As some of you might recall

> we almost lost the last week of November. For about 4 weeks

> he was very sick. Running fever of up to 104, taking Lortabs every

> 2 hours and Morphine twice a day for pain. He did not eat for

about

> 2 weeks and was hurting so bad that he could not sit, stand and

only

> lay in bed in one position. For those of you that do not know our

> situation he is stage 4 with mets to the lungs. He also had a very

> bad ulceration in the rectum at the site of the original surgery.

> He developed a fistula that bonded to the bladder and fought that

> battle and won, but could not ever get rid of the pain in the

> rectum. All his doctors strongly advised him to get a colostomy.

> After 3 1/2 yrs of being confined to the house and not being able

to

> eat what he like and suffering the pain if he did, he finally wound

> up in the hospital close to death. His blood pressure was 80/40

and

> was given transfusions, plasma, and lots of IV antibiotic to

> stabilize him. On day 3 they did the colostomy and gave us our

> famous six week vacation from any further treatment.

> When I came to the site Monday and read out Kim, Tam, and Maeve's

> bad news I just could not write my post. I also had a's Mom on

> my mind. Last night I received a email from a lady on this site

> asking about us and she thinks I should share our news because it

is

> news with some encouragment in it. I kicked it back and forth and

> agree with her. This is a long post so please bear with me because

> I am not good in putting my feeling into writing. It's going to be

> 4 years in July since we started this battle and my every waking

> moment is spent with my husband on my mind. There have been

night's

> that I stayed on this computer all night researching new treatment

> for this horrible disease. There have been people close to me that

> have told me to stay off the dam computer because I am just

> upsetting myself. Being my stubborn self I listened to no one and

> kept on looking. I know some of you are wondering where I am going

> with this. I am not patting myself on the back, believe me. What

I

> am trying to say is that thru this computer and sites such as this

I

> found out about RFA and IMRT.

> We were told that was cured after his colorectal surgery.

He

> had 24 lymph nodes taken and all were clean. We even asked our

> PREVIOUS Onc. for follow up chemo and he said it was not

necessary.

> One year later it was back in the lung. I called surgeons all over

> the US and checked on a precedure called VATS, but in the end we

> went with the traditional surgery. One year later the same tumor

> was back and thats when I used my research about RFA and approached

> the Oncologist with that option. He was willing to work with us

and

> found Dr. Nielson for us. The RFA was done and one year

later

> back to square one with the same tumor. I then researched IMRT on

> the lung and we were fortunate that it could be done at CTRC in San

> where our Onc is located. He had three treatments done in

> October 2003 and was continuing the Xeloda. At about that time the

> rectal pain set in and you already know the rest.

> We had his blood work and CEA done a week before our Monday

> appointment and then lost a lot of sleep in anticipation of Mondays

> appt.

> Here is the good part of the story!!! Both nurses came in with

> grins on their faces and we could not figure out what was going

on.

> They fessed up and said the CEA was down again. Thank God we were

> sitting down because I totally lost it. had already made

the

> decision NO more chemo if it was going to be the drip method. In

> came the Onc and jumped up and told him his feelings and

that

> he was ready for it to be in God's hands now. The Onc popped the

> two latest PET scans on the board and told us to take a look

because

> it was amazing!!!! The first Pet had a very dark intense tumor on

> it and the second had a smaller and very light gray spot. The Onc

> said he would call the Radiologist downstairs and see if they

> thought the tumor was still dying off or if they should proceed

with

> a few more treatments.

> The other good news is they are already starting to receive

Eributux

> but that is not for . He is giving us another " 3 month "

> vacation and hopefully by that time he will have the Avastin and he

> will let take it with the Xeloda. I asked if Avastin comes

> in pill form and he said no. There are other things that are in

> pill form like Avastin but would rather wait for the Avastin.

> Let me apologize for my long post again, but for the newbies I

> thought it was important.

> and I are not stupid and know our roller coaster ride is not

> over but it is buying precious time for me and my Best Friend.

> Tomorrow he gets a colonoscopy and then he is off to the Coast with

> his beloved Air Boat!!!!

> The moral of my story is PLEASE folks, never never never give up

> hope. Never pay attention to anyone critizing you for spending too

> much time on the internet researching, because I trully believe in

> my heart that if I had not had my amunition for our appointments

> may not be here today. It has all been a gamble that has

> paid off so far.

> God Bless you All,

> Joyce

February 18, 2004

Thanks for sending your story. There has been way too much bad news

lately. I think it helps to know there is hope, no matter what.

Miracles happen!

Cliff H.

February 18, 2004

Thanks for sending your story. There has been way too much bad news

lately. I think it helps to know there is hope, no matter what.

Miracles happen!

Cliff H.

February 18, 2004

Thanks for sending your story. There has been way too much bad news

lately. I think it helps to know there is hope, no matter what.

Miracles happen!

Cliff H.

February 18, 2004

Betty,

At the moment he is not on the Xeloda but will go back on it in

three months or maybe sooner. The Onc said 3 months, but if the

Avastin gets here sooner I am going to ask him to not wait the 3

months.

never had the hand and foot problem. He used Aquaphor on his

hands and feet. At night I loaded his feet with it and then slipped

his socks on to sleep in. His side effect was fatigue and then his

blood count went down. He was taking 5 500mgs twice a day and so

the Onc reduced the dosage to 4 twice a day. He stayed on that

until the infection sent him to the hospital for surgery. He never

had any nausea or diahrea or other symptoms.

Hope this helps.

Joyce

> Joyce,

>

> Question: Will continue to take Xeloda? My brother is on

Xeloda

> along with Oxalplatin and he has hand/food syndrome really bad,

sick, sick,

> sick...to the point that he is almost ready to quit..so I need

ammunition to get him

> to stay at least with " something. "

>

> Brother dx 10/01, Stage III, resection-- 5FU/Lev for 6 mos,

recurrent 9/03.

>

> That's great news for you and your husband.

>

> Cheers,

> Gurlstar (Betty)

>

February 18, 2004

Betty,

At the moment he is not on the Xeloda but will go back on it in

three months or maybe sooner. The Onc said 3 months, but if the

Avastin gets here sooner I am going to ask him to not wait the 3

months.

never had the hand and foot problem. He used Aquaphor on his

hands and feet. At night I loaded his feet with it and then slipped

his socks on to sleep in. His side effect was fatigue and then his

blood count went down. He was taking 5 500mgs twice a day and so

the Onc reduced the dosage to 4 twice a day. He stayed on that

until the infection sent him to the hospital for surgery. He never

had any nausea or diahrea or other symptoms.

Hope this helps.

Joyce

> Joyce,

>

> Question: Will continue to take Xeloda? My brother is on

Xeloda

> along with Oxalplatin and he has hand/food syndrome really bad,

sick, sick,

> sick...to the point that he is almost ready to quit..so I need

ammunition to get him

> to stay at least with " something. "

>

> Brother dx 10/01, Stage III, resection-- 5FU/Lev for 6 mos,

recurrent 9/03.

>

> That's great news for you and your husband.

>

> Cheers,

> Gurlstar (Betty)

>

February 18, 2004

Joyce, I enjoyed every moment spent reading your story. Time well

spent and I am so very happy for you both. I try real hard to always

keep positive and I agree, I don't think you can do enough research,

although it is good to take a break every once in a while.

Thanks for sharing and giving many on this board much needed hope.

Fondly,

Monika

> Hi Everyone,

> Monday I came to the site to post about our visit with the

> Oncologist after our 6 week vacation. As some of you might recall

> we almost lost the last week of November. For about 4 weeks

> he was very sick. Running fever of up to 104, taking Lortabs every

> 2 hours and Morphine twice a day for pain. He did not eat for

about

> 2 weeks and was hurting so bad that he could not sit, stand and

only

> lay in bed in one position. For those of you that do not know our

> situation he is stage 4 with mets to the lungs. He also had a very

> bad ulceration in the rectum at the site of the original surgery.

> He developed a fistula that bonded to the bladder and fought that

> battle and won, but could not ever get rid of the pain in the

> rectum. All his doctors strongly advised him to get a colostomy.

> After 3 1/2 yrs of being confined to the house and not being able

to

> eat what he like and suffering the pain if he did, he finally wound

> up in the hospital close to death. His blood pressure was 80/40

and

> was given transfusions, plasma, and lots of IV antibiotic to

> stabilize him. On day 3 they did the colostomy and gave us our

> famous six week vacation from any further treatment.

> When I came to the site Monday and read out Kim, Tam, and Maeve's

> bad news I just could not write my post. I also had a's Mom on

> my mind. Last night I received a email from a lady on this site

> asking about us and she thinks I should share our news because it

is

> news with some encouragment in it. I kicked it back and forth and

> agree with her. This is a long post so please bear with me because

> I am not good in putting my feeling into writing. It's going to be

> 4 years in July since we started this battle and my every waking

> moment is spent with my husband on my mind. There have been

night's

> that I stayed on this computer all night researching new treatment

> for this horrible disease. There have been people close to me that

> have told me to stay off the dam computer because I am just

> upsetting myself. Being my stubborn self I listened to no one and

> kept on looking. I know some of you are wondering where I am going

> with this. I am not patting myself on the back, believe me. What

I

> am trying to say is that thru this computer and sites such as this

I

> found out about RFA and IMRT.

> We were told that was cured after his colorectal surgery.

He

> had 24 lymph nodes taken and all were clean. We even asked our

> PREVIOUS Onc. for follow up chemo and he said it was not

necessary.

> One year later it was back in the lung. I called surgeons all over

> the US and checked on a precedure called VATS, but in the end we

> went with the traditional surgery. One year later the same tumor

> was back and thats when I used my research about RFA and approached

> the Oncologist with that option. He was willing to work with us

and

> found Dr. Nielson for us. The RFA was done and one year

later

> back to square one with the same tumor. I then researched IMRT on

> the lung and we were fortunate that it could be done at CTRC in San

> where our Onc is located. He had three treatments done in

> October 2003 and was continuing the Xeloda. At about that time the

> rectal pain set in and you already know the rest.

> We had his blood work and CEA done a week before our Monday

> appointment and then lost a lot of sleep in anticipation of Mondays

> appt.

> Here is the good part of the story!!! Both nurses came in with

> grins on their faces and we could not figure out what was going

on.

> They fessed up and said the CEA was down again. Thank God we were

> sitting down because I totally lost it. had already made

the

> decision NO more chemo if it was going to be the drip method. In

> came the Onc and jumped up and told him his feelings and

that

> he was ready for it to be in God's hands now. The Onc popped the

> two latest PET scans on the board and told us to take a look

because

> it was amazing!!!! The first Pet had a very dark intense tumor on

> it and the second had a smaller and very light gray spot. The Onc

> said he would call the Radiologist downstairs and see if they

> thought the tumor was still dying off or if they should proceed

with

> a few more treatments.

> The other good news is they are already starting to receive

Eributux

> but that is not for . He is giving us another " 3 month "

> vacation and hopefully by that time he will have the Avastin and he

> will let take it with the Xeloda. I asked if Avastin comes

> in pill form and he said no. There are other things that are in

> pill form like Avastin but would rather wait for the Avastin.

> Let me apologize for my long post again, but for the newbies I

> thought it was important.

> and I are not stupid and know our roller coaster ride is not

> over but it is buying precious time for me and my Best Friend.

> Tomorrow he gets a colonoscopy and then he is off to the Coast with

> his beloved Air Boat!!!!

> The moral of my story is PLEASE folks, never never never give up

> hope. Never pay attention to anyone critizing you for spending too

> much time on the internet researching, because I trully believe in

> my heart that if I had not had my amunition for our appointments

> may not be here today. It has all been a gamble that has

> paid off so far.

> God Bless you All,

> Joyce

February 18, 2004

Thank you so much for taking the time for this lovely post.

I, too, am the researcher and last year in January challenged the

surgeon who told my husband to get his life in order because he had

only 6 to 12 months. Well, here we are. And, even though the onc's

attitude is difficult to deal with, she doesn't give up. And,

hooray for the new drugs! And, thanks to the internet and this

group or this wealth of information wouldn't be so readily available

to us. It was much different just 10 years ago.

> Hi Everyone,

> Monday I came to the site to post about our visit with the

> Oncologist after our 6 week vacation. As some of you might recall

> we almost lost the last week of November. For about 4

weeks

> he was very sick. Running fever of up to 104, taking Lortabs

every

> 2 hours and Morphine twice a day for pain. He did not eat for

about

> 2 weeks and was hurting so bad that he could not sit, stand and

only

> lay in bed in one position. For those of you that do not know our

> situation he is stage 4 with mets to the lungs. He also had a

very

> bad ulceration in the rectum at the site of the original surgery.

> He developed a fistula that bonded to the bladder and fought that

> battle and won, but could not ever get rid of the pain in the

> rectum. All his doctors strongly advised him to get a colostomy.

> After 3 1/2 yrs of being confined to the house and not being able

to

> eat what he like and suffering the pain if he did, he finally

wound

> up in the hospital close to death. His blood pressure was 80/40

and

> was given transfusions, plasma, and lots of IV antibiotic to

> stabilize him. On day 3 they did the colostomy and gave us our

> famous six week vacation from any further treatment.

> When I came to the site Monday and read out Kim, Tam, and Maeve's

> bad news I just could not write my post. I also had a's Mom

on

> my mind. Last night I received a email from a lady on this site

> asking about us and she thinks I should share our news because it

is

> news with some encouragment in it. I kicked it back and forth and

> agree with her. This is a long post so please bear with me

because

> I am not good in putting my feeling into writing. It's going to

be

> 4 years in July since we started this battle and my every waking

> moment is spent with my husband on my mind. There have been

night's

> that I stayed on this computer all night researching new treatment

> for this horrible disease. There have been people close to me

that

> have told me to stay off the dam computer because I am just

> upsetting myself. Being my stubborn self I listened to no one and

> kept on looking. I know some of you are wondering where I am

going

> with this. I am not patting myself on the back, believe me. What

I

> am trying to say is that thru this computer and sites such as this

I

> found out about RFA and IMRT.

> We were told that was cured after his colorectal surgery.

He

> had 24 lymph nodes taken and all were clean. We even asked our

> PREVIOUS Onc. for follow up chemo and he said it was not

necessary.

> One year later it was back in the lung. I called surgeons all

over

> the US and checked on a precedure called VATS, but in the end we

> went with the traditional surgery. One year later the same tumor

> was back and thats when I used my research about RFA and

approached

> the Oncologist with that option. He was willing to work with us

and

> found Dr. Nielson for us. The RFA was done and one year

later

> back to square one with the same tumor. I then researched IMRT on

> the lung and we were fortunate that it could be done at CTRC in

San

> where our Onc is located. He had three treatments done in

> October 2003 and was continuing the Xeloda. At about that time

the

> rectal pain set in and you already know the rest.

> We had his blood work and CEA done a week before our Monday

> appointment and then lost a lot of sleep in anticipation of

Mondays

> appt.

> Here is the good part of the story!!! Both nurses came in with

> grins on their faces and we could not figure out what was going

on.

> They fessed up and said the CEA was down again. Thank God we were

> sitting down because I totally lost it. had already made

the

> decision NO more chemo if it was going to be the drip method. In

> came the Onc and jumped up and told him his feelings and

that

> he was ready for it to be in God's hands now. The Onc popped the

> two latest PET scans on the board and told us to take a look

because

> it was amazing!!!! The first Pet had a very dark intense tumor on

> it and the second had a smaller and very light gray spot. The Onc

> said he would call the Radiologist downstairs and see if they

> thought the tumor was still dying off or if they should proceed

with

> a few more treatments.

> The other good news is they are already starting to receive

Eributux

> but that is not for . He is giving us another " 3 month "

> vacation and hopefully by that time he will have the Avastin and

he

> will let take it with the Xeloda. I asked if Avastin comes

> in pill form and he said no. There are other things that are in

> pill form like Avastin but would rather wait for the Avastin.

> Let me apologize for my long post again, but for the newbies I

> thought it was important.

> and I are not stupid and know our roller coaster ride is

not

> over but it is buying precious time for me and my Best Friend.

> Tomorrow he gets a colonoscopy and then he is off to the Coast

with

> his beloved Air Boat!!!!

> The moral of my story is PLEASE folks, never never never give up

> hope. Never pay attention to anyone critizing you for spending

too

> much time on the internet researching, because I trully believe in

> my heart that if I had not had my amunition for our appointments

> may not be here today. It has all been a gamble that has

> paid off so far.

> God Bless you All,

> Joyce

February 19, 2004

Hi Joyce -I am beside myself with happiness for you and . I

remember those many days of posts when was having such a very

rought time. Thank you for letting us know the great news and the

reminder to especially those who are just starting out in this

battle, not to give up.

Best wishes,

Kris

February 19, 2004

Hi Joyce -I am beside myself with happiness for you and . I

remember those many days of posts when was having such a very

rought time. Thank you for letting us know the great news and the

reminder to especially those who are just starting out in this

battle, not to give up.

Best wishes,

Kris

February 19, 2004

Hi Joyce -I am beside myself with happiness for you and . I

remember those many days of posts when was having such a very

rought time. Thank you for letting us know the great news and the

reminder to especially those who are just starting out in this

battle, not to give up.

Best wishes,

Kris

February 19, 2004

Hi Betty- I am sorry to hear about your brother having such a rough

time recently. A couple of things- After being treated with

oxaliplatin/Xeloda for 7 mth, I deveoloped much more severe hand foot

syndrome. My oncologist did not discontinue the Xeloda, but

decreased my dose 12%. I am much more comfortable now. Is that a

possibility for your brother?

You mentioned that he was receiving radiation also. When I had

radiation for my periaortic lymph nodes next to my spine, I got

nauseous due to radiation hitting a bit of my stomach, and I was not

receiving Xeloda/oxaliplatin which can intensify the effects of

radiation. Could stomach/intestinal irritation be the cause of him

feeling so badly?I did not vomit a lot, but because I am naturally

pretty thin and was losing weight, they gave me TPN for a few weeks

just so I would not get more debilitated. I felt back to normal in a

few weeks after radiation was over. They did change the direction of

the radiation for my last few treatments just to reduce the amount of

normal tissue that could be significantly injured by the radiation.

Hope things go better for your brother soon,

Kris

February 19, 2004