Questions about different treatments

lmchils57

My son Scott who is 31 was dx with stage IV colon cancer that has moved into a large part of his liver and some of the lymph glands near the liver. His oncologist has him on Fluoracil (this is what is in the pump, Irinotecan, Leucovorin, and avastin when we get his blood pressure down. He just finished his first treatment and actually did well with it, very little side effects other then nausea yesterday. Some of the people on here have talked about the Folfox regimen I am not sure what that is, could you tell me a little about it? What are some of the other treatments some of you have had and how well did they work. We are so new to this that I do not know much yet about what therapies may work better for people.
Glad for any input, we really want to learn anything we can. I figure that hearing what others have had for treatments and how well they did on them. I realize not everyone will react the same way and some will not have the same results, but it can not hurt to hear from others going through this.
Keeping positive thoughts
Linda

Crow71

Hey Linda - It's great to
Hey Linda - It's great to hear that you are staying positive. Cancer hates happiness. Happiness kills cancer. I believe this to my core just as I believe that stress can contribute to the development of cancer. Every moment, especially the ones with those beautiful boys, has an infinite potential for happiness.
FOLFOX is a mix of Oxalliplatin and 5FU. Irinotecan is also a great chemo drug. I'll probably be on it at some point in the future. I'm not sure what the side effects of tecan are. Oxy is pretty toxic. The side effects varied from treatment to treatment for me. Mostly sensitivity to cold, neuropathy in the feet and hands, mouth and jaw pain, low to no energy.
I also have mets in my liver and peritoneal lining. That's the lining of the main abdominal cavity. If your son doesn't have any peritoneal lining issues, that's a great thing. If the cancer hasn't spread to his lungs, that's a great thing. Lots of people have had successful liver resections. I'm looking into surgical option right now.

I've been thinking about you a lot since you first posted. I'm, 38 with 3 children ages 4, 8, and 10. My parents have had a terrible time dealing with this mess. My mom has said over and over how much she wishes that she could have the cancer instead of me. As heartfelt as that is, it isn't meaningful to me. Part of how I have made sense of having cancer is by feeling grateful that this disease came to me and not my children. My kids will have tests early in life. They will not suffer from this the way I have. No matter what happens to me, this ends with me. That is the way I see it.

What is meaningful to me is hearing my mom say that she is proud of me. Having cancer makes me feel like a failure. I'm sick and grumpy all the time. I can't work. I really felt sorry for myself for a while. The people on this board really helped me get it together and start living again. Your son and I are big boys, but we're still boys who want to hear that our parents are proud of us.

Keep asking questions. You and your son are not alone. Take care and be happy.
Roger

Patteee

Crow71 said:

Hey Linda - It's great to
Hey Linda - It's great to hear that you are staying positive. Cancer hates happiness. Happiness kills cancer. I believe this to my core just as I believe that stress can contribute to the development of cancer. Every moment, especially the ones with those beautiful boys, has an infinite potential for happiness.
FOLFOX is a mix of Oxalliplatin and 5FU. Irinotecan is also a great chemo drug. I'll probably be on it at some point in the future. I'm not sure what the side effects of tecan are. Oxy is pretty toxic. The side effects varied from treatment to treatment for me. Mostly sensitivity to cold, neuropathy in the feet and hands, mouth and jaw pain, low to no energy.
I also have mets in my liver and peritoneal lining. That's the lining of the main abdominal cavity. If your son doesn't have any peritoneal lining issues, that's a great thing. If the cancer hasn't spread to his lungs, that's a great thing. Lots of people have had successful liver resections. I'm looking into surgical option right now.

I've been thinking about you a lot since you first posted. I'm, 38 with 3 children ages 4, 8, and 10. My parents have had a terrible time dealing with this mess. My mom has said over and over how much she wishes that she could have the cancer instead of me. As heartfelt as that is, it isn't meaningful to me. Part of how I have made sense of having cancer is by feeling grateful that this disease came to me and not my children. My kids will have tests early in life. They will not suffer from this the way I have. No matter what happens to me, this ends with me. That is the way I see it.

What is meaningful to me is hearing my mom say that she is proud of me. Having cancer makes me feel like a failure. I'm sick and grumpy all the time. I can't work. I really felt sorry for myself for a while. The people on this board really helped me get it together and start living again. Your son and I are big boys, but we're still boys who want to hear that our parents are proud of us.

Keep asking questions. You and your son are not alone. Take care and be happy.
Roger

wow
thank you Roger
your
wow
thank you Roger
your post not for me - but I got a lot out of it and I am thankful

lmchils57

Crow71 said:

Hey Linda - It's great to
Hey Linda - It's great to hear that you are staying positive. Cancer hates happiness. Happiness kills cancer. I believe this to my core just as I believe that stress can contribute to the development of cancer. Every moment, especially the ones with those beautiful boys, has an infinite potential for happiness.
FOLFOX is a mix of Oxalliplatin and 5FU. Irinotecan is also a great chemo drug. I'll probably be on it at some point in the future. I'm not sure what the side effects of tecan are. Oxy is pretty toxic. The side effects varied from treatment to treatment for me. Mostly sensitivity to cold, neuropathy in the feet and hands, mouth and jaw pain, low to no energy.
I also have mets in my liver and peritoneal lining. That's the lining of the main abdominal cavity. If your son doesn't have any peritoneal lining issues, that's a great thing. If the cancer hasn't spread to his lungs, that's a great thing. Lots of people have had successful liver resections. I'm looking into surgical option right now.

I've been thinking about you a lot since you first posted. I'm, 38 with 3 children ages 4, 8, and 10. My parents have had a terrible time dealing with this mess. My mom has said over and over how much she wishes that she could have the cancer instead of me. As heartfelt as that is, it isn't meaningful to me. Part of how I have made sense of having cancer is by feeling grateful that this disease came to me and not my children. My kids will have tests early in life. They will not suffer from this the way I have. No matter what happens to me, this ends with me. That is the way I see it.

What is meaningful to me is hearing my mom say that she is proud of me. Having cancer makes me feel like a failure. I'm sick and grumpy all the time. I can't work. I really felt sorry for myself for a while. The people on this board really helped me get it together and start living again. Your son and I are big boys, but we're still boys who want to hear that our parents are proud of us.

Keep asking questions. You and your son are not alone. Take care and be happy.
Roger

Not that I would wish this on anyone
Not that I would wish this on anyone but at the same time hearing that there are others in the same age group going through this makes us feel less alone. I know the other day as he was sitting there getting his treatment he was looking at all the other people coming and going and they were mostly all older people. I think at that point it was easy to say why me and at this age, he didn't say it but I am not so sure it did not go through his head.
How are your children coping with this whole thing? Scott's boys are 8,7 and 5. Byron the 7 year old was not even sure he wanted to come this weekend to be with his dad because somehow he thought he would get it from his dad. We talked about it and I think he feels much better now but I understand how come he was scared. Donnie, the 8 year old went wround sticking notes all over the place last weekend saying "No Cancer" and "Cnacer Go Away". THe youngest one does not totally understand it all not that I think the others do either completely. I worry about them as much as I do Scott and how they are going to cope through this.
The surgeon he has seen says that he cannot have a liver resection because both lopes are affected, but I really think when they are through with this round of treatments we are going to talk an actual surgeon that does the liver resections, I am not ready to rule out anything and neither is Scott. If the time comes to chose to go to Seattle or Salt Lake and check out clinical trials we will do it. Fortunately both places we have family to stay with so that will help with the costs.
Scott has a fantastic attitude so far and I hope he can keep it. He says he is tough and he likes a good fight so he is going to fight with all he has to beat this.
YOu take care also.
Linda

msccolon

what the heck is FOLFOX?!
Actually, to be exact, FOLFOX is 5FU, Leucovorin and Oxaliplatin (Hence the FOLFOX) FOLFIRI is 5FU, Leucovorin and Irinotecan (also known as CPT-11). Avastin is just an additional biologic agent designed to cut off a tumor's ability to provide itself with a blood supply. Xeloda is a pill form of 5FU, and it's referred to as XELOX and XELIRI when used in combo with the Leucovorin and Oxaliplatin or CPT-11.

Don't worry, pretty soon you'll know more about this disease and the fight against it than you ever wished you did! Keep strong!
mary

Crow71

lmchils57 said:

Not that I would wish this on anyone
Not that I would wish this on anyone but at the same time hearing that there are others in the same age group going through this makes us feel less alone. I know the other day as he was sitting there getting his treatment he was looking at all the other people coming and going and they were mostly all older people. I think at that point it was easy to say why me and at this age, he didn't say it but I am not so sure it did not go through his head.
How are your children coping with this whole thing? Scott's boys are 8,7 and 5. Byron the 7 year old was not even sure he wanted to come this weekend to be with his dad because somehow he thought he would get it from his dad. We talked about it and I think he feels much better now but I understand how come he was scared. Donnie, the 8 year old went wround sticking notes all over the place last weekend saying "No Cancer" and "Cnacer Go Away". THe youngest one does not totally understand it all not that I think the others do either completely. I worry about them as much as I do Scott and how they are going to cope through this.
The surgeon he has seen says that he cannot have a liver resection because both lopes are affected, but I really think when they are through with this round of treatments we are going to talk an actual surgeon that does the liver resections, I am not ready to rule out anything and neither is Scott. If the time comes to chose to go to Seattle or Salt Lake and check out clinical trials we will do it. Fortunately both places we have family to stay with so that will help with the costs.
Scott has a fantastic attitude so far and I hope he can keep it. He says he is tough and he likes a good fight so he is going to fight with all he has to beat this.
YOu take care also.
Linda

There are lots of people in
There are lots of people in their 20's and 30's with cc on this board, but I don't see many either when I go in for treatment. The sooner you and Scott can get past the "why me" phases, the sooner you can get to the "why not me?" Phase - as in "why can't I beat this?"

The kids are doing okay. My wife, KIm, and I have tried to be as honest as possible without scaring them. Ella, 10 is very thoughtful and doesn't talk much about it. But I know she thinks about it all the time. Some kids at school told her that people die from cancer. I tell her that I'm not going to die. If I'm wrong, the fact that Daddy was wrong will be the least of her concerns. Grace, 8, is less contemplative and lives in the moment with theatrical verve. I love that about her - and appreciate it now more than ever. As odd as it seems, Owen, 4, may be the most aware of what's going on. The other day he told me a story about a little bear named Owen who was so sad because his daddy died. Can't quite wrap my mind or heart around that one yet. Perhaps some other parents can chime in. Brooks?

I've been told since July that surgery is not an option - until this afternoon. Dr. Shen here at Wake Forest believes I may be a candidate for HIPEC. There's a thread from today about that. So keep the quiet hope that the chemo will make Scott a candidate for liver resection.

It's good that Scott's a tough fighter.

Roger

Crow71

msccolon said:

what the heck is FOLFOX?!
Actually, to be exact, FOLFOX is 5FU, Leucovorin and Oxaliplatin (Hence the FOLFOX) FOLFIRI is 5FU, Leucovorin and Irinotecan (also known as CPT-11). Avastin is just an additional biologic agent designed to cut off a tumor's ability to provide itself with a blood supply. Xeloda is a pill form of 5FU, and it's referred to as XELOX and XELIRI when used in combo with the Leucovorin and Oxaliplatin or CPT-11.

Don't worry, pretty soon you'll know more about this disease and the fight against it than you ever wished you did! Keep strong!
mary

Thanks Mary. I've had
Thanks Mary. I've had gallons of FOLFOX, but I never really thought about where the name came from. DUH! Another side effect of FOLFOX is that it has melted my brain.
Roger

JR

lmchils57 said:

Not that I would wish this on anyone
Not that I would wish this on anyone but at the same time hearing that there are others in the same age group going through this makes us feel less alone. I know the other day as he was sitting there getting his treatment he was looking at all the other people coming and going and they were mostly all older people. I think at that point it was easy to say why me and at this age, he didn't say it but I am not so sure it did not go through his head.
How are your children coping with this whole thing? Scott's boys are 8,7 and 5. Byron the 7 year old was not even sure he wanted to come this weekend to be with his dad because somehow he thought he would get it from his dad. We talked about it and I think he feels much better now but I understand how come he was scared. Donnie, the 8 year old went wround sticking notes all over the place last weekend saying "No Cancer" and "Cnacer Go Away". THe youngest one does not totally understand it all not that I think the others do either completely. I worry about them as much as I do Scott and how they are going to cope through this.
The surgeon he has seen says that he cannot have a liver resection because both lopes are affected, but I really think when they are through with this round of treatments we are going to talk an actual surgeon that does the liver resections, I am not ready to rule out anything and neither is Scott. If the time comes to chose to go to Seattle or Salt Lake and check out clinical trials we will do it. Fortunately both places we have family to stay with so that will help with the costs.
Scott has a fantastic attitude so far and I hope he can keep it. He says he is tough and he likes a good fight so he is going to fight with all he has to beat this.
YOu take care also.
Linda

Salt Lake ??
Linda,
I live just outside of Salt Lake. I get treatment at the Huntsman Cancer Institute. If I can be any help to you and your son, just let me know.

John

Unknown

This comment has been removed by the Moderator

Brenda3.16

unknown said:

This comment has been removed by the Moderator

After my Stage 4 DX im March
After my Stage 4 DX im March 09 ,I was totally devasted and felt totally alone. Finding this board changed my life. It gave my hope and continues to do so. I lurked on the boards for a long time and didn't post at all. My sister starting posting and I finally joined in. My sister and my mother have been with me every step of the way. It is great that you are there to support your son and grandchildren.

My daughter is 14 and she has been my main concern. I have been honest with her, but try not to make her overly concerned about it. Unfortunately cancer is a big part of our life. The Drs appointments, scans and chemo have changed our life, but I try to not let it be the center of our life. Our life is still pretty normal. I have worked full time as a teacher. I had to take off a couple days every other week when I was on FOLFOX. I still take my daughter to her activities, walk, ski , travel and do everything I can. My mom and sister jump in and help when I need it. My hair thinned on FOLFOX but I didn't lose it. The day after my pump was disconnected I was really tired and wanted to sleep all day.

I loved Rogers comment Happiness kills cancer !!

I hope Scott will come to the board eventually. You can realy the informationt to him for now.

Brenda

Brenda3.16

unknown said:

This comment has been removed by the Moderator

After my Stage 4 DX im March
After my Stage 4 DX im March 09 ,I was totally devasted and felt totally alone. Finding this board changed my life. It gave my hope and continues to do so. I lurked on the boards for a long time and didn't post at all. My sister starting posting and I finally joined in. My sister and my mother have been with me every step of the way. It is great that you are there to support your son and grandchildren.

My daughter is 14 and she has been my main concern. I have been honest with her, but try not to make her overly concerned about it. Unfortunately cancer is a big part of our life. The Drs appointments, scans and chemo have changed our life, but I try to not let it be the center of our life. Our life is still pretty normal. I have worked full time as a teacher. I had to take off a couple days every other week when I was on FOLFOX. I still take my daughter to her activities, walk, ski , travel and do everything I can. My mom and sister jump in and help when I need it. My hair thinned on FOLFOX but I didn't lose it. The day after my pump was disconnected I was really tired and wanted to sleep all day.

I loved Rogers comment Happiness kills cancer !!

I hope Scott will come to the board eventually. You can realy the informationt to him for now.

Brenda

pluckey

Crow71 said:

There are lots of people in
There are lots of people in their 20's and 30's with cc on this board, but I don't see many either when I go in for treatment. The sooner you and Scott can get past the "why me" phases, the sooner you can get to the "why not me?" Phase - as in "why can't I beat this?"

The kids are doing okay. My wife, KIm, and I have tried to be as honest as possible without scaring them. Ella, 10 is very thoughtful and doesn't talk much about it. But I know she thinks about it all the time. Some kids at school told her that people die from cancer. I tell her that I'm not going to die. If I'm wrong, the fact that Daddy was wrong will be the least of her concerns. Grace, 8, is less contemplative and lives in the moment with theatrical verve. I love that about her - and appreciate it now more than ever. As odd as it seems, Owen, 4, may be the most aware of what's going on. The other day he told me a story about a little bear named Owen who was so sad because his daddy died. Can't quite wrap my mind or heart around that one yet. Perhaps some other parents can chime in. Brooks?

I've been told since July that surgery is not an option - until this afternoon. Dr. Shen here at Wake Forest believes I may be a candidate for HIPEC. There's a thread from today about that. So keep the quiet hope that the chemo will make Scott a candidate for liver resection.

It's good that Scott's a tough fighter.

Roger

surgery IS an option
kind of stealing the thread but wanted to respond to your comment - I was told surgery not an option either. I didn't like the plan of "Let's keep doing the chemo until it doesn't work any more"..Screw that.

I wasn't looking for a butcher to say "yes" to surgery, I was looking for info and true options. SOOO glad you saw Dr. Shen..isn't it amazing what a little Hope can do?????

So for Scott and others - our job now IS to fight, no matter what.

Peggy

pluckey

lmchils57 said:

Not that I would wish this on anyone
Not that I would wish this on anyone but at the same time hearing that there are others in the same age group going through this makes us feel less alone. I know the other day as he was sitting there getting his treatment he was looking at all the other people coming and going and they were mostly all older people. I think at that point it was easy to say why me and at this age, he didn't say it but I am not so sure it did not go through his head.
How are your children coping with this whole thing? Scott's boys are 8,7 and 5. Byron the 7 year old was not even sure he wanted to come this weekend to be with his dad because somehow he thought he would get it from his dad. We talked about it and I think he feels much better now but I understand how come he was scared. Donnie, the 8 year old went wround sticking notes all over the place last weekend saying "No Cancer" and "Cnacer Go Away". THe youngest one does not totally understand it all not that I think the others do either completely. I worry about them as much as I do Scott and how they are going to cope through this.
The surgeon he has seen says that he cannot have a liver resection because both lopes are affected, but I really think when they are through with this round of treatments we are going to talk an actual surgeon that does the liver resections, I am not ready to rule out anything and neither is Scott. If the time comes to chose to go to Seattle or Salt Lake and check out clinical trials we will do it. Fortunately both places we have family to stay with so that will help with the costs.
Scott has a fantastic attitude so far and I hope he can keep it. He says he is tough and he likes a good fight so he is going to fight with all he has to beat this.
YOu take care also.
Linda

I thought the same thing
I am 47, diagnosed last March at 46 with Stage 4 cc. I have only met one person, at a support group, that has colon cancer. I always felt to isolated at chemo treatments- older people,other cancers. My support group is mostly ladies with breast cancer....

My children are older - 18 and 14. My 14 yo basically stayed away from me at hung with friends as much as she could for the first 6 months...i was sooooo sick and weak and in and out of the hospital constatnly that she just didn't want to be around it. My 18 yo was/is a trooper. I am very open with my girls, but they don't ask any questions. I think they just cue into my attitude/emotions and need me to be strong..so strong i will be.

Linda- wishing you and Scott the best in this fight..you are at a great place at this message board..wonderful beautiful helpful hopeful people!

Peggy