Your opinion

luvmylife

I have been reading messages on the board for about 6 mos but have never posted a comment. My husband, Jimmy, was dx with stage IV colon cancer on 5/10/10. He had a cancerous polyp removed 5 yrs ago and we're not sure if it was completely resected or if it reseeded, but the tumor is outside of the colon with 1 lesion on the liver. Surgery is not an option at this time as the tumor is too close to the super mesentaric artery of the abdomen. He was put on Folfox in July 2010. The CT in Oct showed a decrease in the liver mass but the tumor grew slightly so he was put on Avastin. His last CT in Dec showed no change in either tumor. We went to Sloan last week for a second opinion and were told that his treatment thus far is correct and that is what they would do. I am a little disappointed because I see posts on the discussion board where liver resections are performed to remove the lesions and I don't completely understand why no surgery is being done to his liver. Since there is only 1 lesion I would think they could remove it or at least do an oblasion or radium implant. I would appreciate any thoughts on this matter.

God Bless you all.

Jan

Unknown

This comment has been removed by the Moderator

Buzzard

Only an educated guess here but..........
I would think that the colon cancer is the primary and the liver lesion is a metastisis from the colon cells. They most likely want to do both surgeries at the same time and in order to do both at once would cause them to try and shrink the tumor at the colon so that the mesentaric artery would not be compromised in surgery. My guess is that they want to do both at once and are trying to accommodate that by shrinking the tumor at the primary site.....just my opinion though.....Good Luck with your journey.......Buzz

luvmylife

unknown said:

This comment has been removed by the Moderator

Thank you so much Kathy for
Thank you so much Kathy for your response. I feel better already. I just want to leave no stone unturned. I know the proximity of the tumor to the SMA causes a surgical complication. I am also very nervous because Jimmy has a Positive KRas mutation which makes him resistant to some of the chemo drugs. He does have a very positive attitude and we have great faith so, for now, that is getting us by. I want to be as proactive as possible and I see on the board that there are quite a few people dx'd w/stage IV who are now NED (Thank God).

Thanks again,

Jan

luvmylife

Buzzard said:

Only an educated guess here but..........
I would think that the colon cancer is the primary and the liver lesion is a metastisis from the colon cells. They most likely want to do both surgeries at the same time and in order to do both at once would cause them to try and shrink the tumor at the colon so that the mesentaric artery would not be compromised in surgery. My guess is that they want to do both at once and are trying to accommodate that by shrinking the tumor at the primary site.....just my opinion though.....Good Luck with your journey.......Buzz

Thank you Buzz. I think
Thank you Buzz. I think you're right about them wanting to do both surgeries @ once. The liver lesion is a colon met. I just thought if that were gone he might have a better chance. You make a good point and I never thought about that.

Jan

Unknown

luvmylife said:

Thank you so much Kathy for
Thank you so much Kathy for your response. I feel better already. I just want to leave no stone unturned. I know the proximity of the tumor to the SMA causes a surgical complication. I am also very nervous because Jimmy has a Positive KRas mutation which makes him resistant to some of the chemo drugs. He does have a very positive attitude and we have great faith so, for now, that is getting us by. I want to be as proactive as possible and I see on the board that there are quite a few people dx'd w/stage IV who are now NED (Thank God).

Thanks again,

Jan

This comment has been removed by the Moderator

luvmylife

unknown said:

This comment has been removed by the Moderator

Kathy - Do you know why you
Kathy - Do you know why you were not given the Folfox? The first oncologist that we saw had mentioned the Xeloda pills and the ocologist that we have now wondered why he did. We liked both doc's it's just that the one we are with now is closer to where we live.

AnneCan

Jan
Welcome to the forum; it looks like you have already gotten good responses + advice. I also have not had surgery; I have two colorectal tumours + tumours on my liver. I had 5 weeks of radiation/chemo; was due to have surgery but this was cancelled when the liver activity was confirmed. Since Sept/09 I have been on folfiri + avastin; this has kept my cancer under control. Good luck!

luvmylife

AnneCan said:

Jan
Welcome to the forum; it looks like you have already gotten good responses + advice. I also have not had surgery; I have two colorectal tumours + tumours on my liver. I had 5 weeks of radiation/chemo; was due to have surgery but this was cancelled when the liver activity was confirmed. Since Sept/09 I have been on folfiri + avastin; this has kept my cancer under control. Good luck!

Thank you Anne. I should
Thank you Anne. I should have communicated with everyone sooner, you guys are a wealth of information and I am finding it very helpful. It is nice to know I am not alone in this fight against this beast that has changed my life.

Jan

Unknown

luvmylife said:

Kathy - Do you know why you
Kathy - Do you know why you were not given the Folfox? The first oncologist that we saw had mentioned the Xeloda pills and the ocologist that we have now wondered why he did. We liked both doc's it's just that the one we are with now is closer to where we live.

This comment has been removed by the Moderator

luvmylife

unknown said:

This comment has been removed by the Moderator

Wow thank you for your reply
Wow thank you for your reply - it is very informative. Just so you know, Jimmy is handling the folfox very well. He really has had no side effects with it. I think most of his trouble is now due to the Avastin which is causing teeth problems, but his reaction the the folfox has been minimum. It is good to know that you are responding well to the chemo esp w/the + mutation.

Jan

Buzzard

luvmylife said:

Thank you Anne. I should
Thank you Anne. I should have communicated with everyone sooner, you guys are a wealth of information and I am finding it very helpful. It is nice to know I am not alone in this fight against this beast that has changed my life.

Jan

Jan........if you like us now...........
just wait til there's a full moon.........we really are a hoot then....

luvmylife

Buzzard said:

Jan........if you like us now...........
just wait til there's a full moon.........we really are a hoot then....

LOL
Too funny! Oh - can I use fb slang on this forum?

tootsie1

Hi
Jan,

You've already gotten better advice than I could give, so I will just welcome you and tell you that I pray there will be a very positive outcome for Jimmy. Welcome!

*hugs*
Gail

luvmylife

tootsie1 said:

Hi
Jan,

You've already gotten better advice than I could give, so I will just welcome you and tell you that I pray there will be a very positive outcome for Jimmy. Welcome!

*hugs*
Gail

Thank you for the welcome
Thank you for the welcome and your prayers Gail - Prayers are always welcome and appreciated.

Jan

TMac52

luvmylife said:

Thank you for the welcome
Thank you for the welcome and your prayers Gail - Prayers are always welcome and appreciated.

Jan

Count me in Jan and Jimmy
Count me in Jan and Jimmy you are now on my prayer list.
Tom

luvmylife

TMac52 said:

Count me in Jan and Jimmy
Count me in Jan and Jimmy you are now on my prayer list.
Tom

Thank you for your prayers
Thank you for your prayers Tom, I look forward to staying in touch with this forum and getting to know everyone.

Jan

Unknown

luvmylife said:

Wow thank you for your reply
Wow thank you for your reply - it is very informative. Just so you know, Jimmy is handling the folfox very well. He really has had no side effects with it. I think most of his trouble is now due to the Avastin which is causing teeth problems, but his reaction the the folfox has been minimum. It is good to know that you are responding well to the chemo esp w/the + mutation.

Jan

This comment has been removed by the Moderator

CherylHutch

unknown said:

This comment has been removed by the Moderator

Hey Kathy
I read your comment with some interest because, as you know, I'm in BC too We beez neighbours, sorta

Anywho... the first protocol I was on was FOLFOX and yes, I have to admit I did not like the Oxi one little bit. Overall, I handled the FOLFOX very well, but by the 10th treatment it was the Oxi that gave me major neuropathy in my feet and nerve damage from my knees down (including my feet)... so we cut out the Oxi for the last two treatments or so. I responded very well to that and came off the chemo in Oct 2007. I do have nodules in my lungs, but they went kind of dormant and weren't doing anything until this past spring they started perking up and becoming a little more active than they had been.

So I had a nice long stretch of 2 1/2 years or so with no treatments. Ahhhhh... bliss! But starting this past June 2010, my onc put me on the Xeloda pills. For the first three months, when I got my scan in Sept... fantastic results! Tumours shrunk by 33%!! Yayaya!! So I was happy taking the next 3 months, even though the Xeloda really did a number on the bottom of my feet, especially the heels. Had another scan in December... sigh... my cancer stopped responding to it and two of the tumours were starting to grow even though I was on the Chemo. So, I was on it for 6 months.

Starting in February... I will be taking the Irinotecan, by itself. I forget what FOLFORI is... that's Irinotecan plus something else? So I guess when I'm just on the Irinotecan, then I'm not on FOLFORI.... and I know I'm not going to be taking Avastin yet. I will be getting tested with the next blood work to see if I test positive for the KRAS gene. That's not because of the Irinotecan, but should we have to switch chemos at some point, then we will know if I can or not.

Soooo, I'm thinking that starting with FOLFORI with Avastin is not necessarily the first protocol for Stage IV... I guess it has to do with where the spread is, how active it is, etc. Actually I have no idea why some get started on one and others on another. Maybe I have champagne tastes so I start on the expensive ones??

Cheryl

KathiM

Welcome to the club no one wants to join!!!
....and for the cancer no one wants to talk about...lol...

When feeling frisky, I work the word 'rectum' into conversations as much as possible, just to see people flinch!!!

As you have already seen, the 'been there/done that' advice is priceless here! I'm so glad you posted...there's nothing to it!

I am one of the 'old suckers' in the group...'only' stage III....but cancer free for 5 years and counting (my second primary, breast cancer, showed up 6 months after my first, rectal...tried to get me again!).

Welcome to the semi-colons!

Hugs, Kathi

Unknown

CherylHutch said:

Hey Kathy
I read your comment with some interest because, as you know, I'm in BC too We beez neighbours, sorta

Anywho... the first protocol I was on was FOLFOX and yes, I have to admit I did not like the Oxi one little bit. Overall, I handled the FOLFOX very well, but by the 10th treatment it was the Oxi that gave me major neuropathy in my feet and nerve damage from my knees down (including my feet)... so we cut out the Oxi for the last two treatments or so. I responded very well to that and came off the chemo in Oct 2007. I do have nodules in my lungs, but they went kind of dormant and weren't doing anything until this past spring they started perking up and becoming a little more active than they had been.

So I had a nice long stretch of 2 1/2 years or so with no treatments. Ahhhhh... bliss! But starting this past June 2010, my onc put me on the Xeloda pills. For the first three months, when I got my scan in Sept... fantastic results! Tumours shrunk by 33%!! Yayaya!! So I was happy taking the next 3 months, even though the Xeloda really did a number on the bottom of my feet, especially the heels. Had another scan in December... sigh... my cancer stopped responding to it and two of the tumours were starting to grow even though I was on the Chemo. So, I was on it for 6 months.

Starting in February... I will be taking the Irinotecan, by itself. I forget what FOLFORI is... that's Irinotecan plus something else? So I guess when I'm just on the Irinotecan, then I'm not on FOLFORI.... and I know I'm not going to be taking Avastin yet. I will be getting tested with the next blood work to see if I test positive for the KRAS gene. That's not because of the Irinotecan, but should we have to switch chemos at some point, then we will know if I can or not.

Soooo, I'm thinking that starting with FOLFORI with Avastin is not necessarily the first protocol for Stage IV... I guess it has to do with where the spread is, how active it is, etc. Actually I have no idea why some get started on one and others on another. Maybe I have champagne tastes so I start on the expensive ones??

Cheryl

This comment has been removed by the Moderator