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luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

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

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luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

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

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luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

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.

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luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

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

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CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

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

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

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luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

Hi Kathy - Hope all is well. I like your picture too. Hey what's a pm?

luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

Hi Cheryl,

Jimmy will be seeing his oncologist tomorrow and I think he will take Jimmy off the oxilaplatin as he has had 12 cycles of it so far and I think you can only be on it for so long. I will post an update after the appt.

Thanks for your input.

Jan

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

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's picture
luvmylife
Posts: 80
Joined: Jun 2010

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

AnneCan
Posts: 3692
Joined: Oct 2009

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's picture
luvmylife
Posts: 80
Joined: Jun 2010

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

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

just wait til there's a full moon.........we really are a hoot then.... :)

luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

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

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

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's picture
luvmylife
Posts: 80
Joined: Jun 2010

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

Jan

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

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

luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

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

Jan

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

....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

luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

Hi Kathi, Sorry I haven't replied sooner. Thank you for your much appreciated welcome. Thank God you are cancer free and Thank God your second cancer was a different primary, I know that sound crazy but you know what I mean.

You can throw the word rectum by me anytime, I promise I won't flinch. I am an x-ray tech and did my share of barium enemas through the yrs. LOL.

Hugs back @ ya! Jan

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Welcome to the board. You have already received excellent guidance and information from this group. The only thing I can add is in order to have surgery to the liver, you need to be off of chemo, expecially Avastin, for several weeks prior to and after surgery. Coming off chemo mid-treatment could cause the cancer to progress. Chemo takes some time to work so stay the course, and take things one day at a time.

Tina

luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

Thank you Tina for the encouraging message. Jimmy sees his onco tomorrow. So I will post an update.

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Hi Jan and Jimmy my diagnosis was in June 2010 but different than yours. I just wanted to say hi and let you know I was thinking about you. I know you will hear many thoughts and experiences on your question here.

Take care, Gail

luvmylife's picture
luvmylife
Posts: 80
Joined: Jun 2010

Hi Gail - I am thinking of you too. I look forward to getting to know you and the others on the forum.
Jan

Nana2's picture
Nana2
Posts: 255
Joined: Mar 2010

Hi Jan and Jimmy, my husband is a "Jim" too. Welcome to the board. I'm sure you'll be encountering a wealth of information (and humor) on here. I'll add the two of you to my prayers.
(hugs)
April

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