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Back in the battle

alexinlv's picture
Posts: 194
Joined: Jul 2010

Good morning all.  I read and learn and get support every day from you all. Thank you for sharing and being here. my husband, tony, stage iv, has at least one new met in liver and 2 or more in lungs.   Pet scan on fri. To check for new growth.  Chemo from there- his 4th go around. He was on xeloda/oxi and avastin previous times.  trying irinotican and cetuxamab (sp). Then check scan in again after a few rounds of that.  Results may lead to surgery on liver and or lungs. Any experiences welcome regarding all of this.Phone won't  type correctly - driving me crazy.  So gotta go - Just want to scream. So tired and need support of you who are going thru it too. Friends/family can't relate and seem to only say be strong etc. can't we just all scream!!!

devotion10's picture
Posts: 640
Joined: Jan 2010

I am not able to write much now but wanted to quickly let you know as soon as I saw your post that Irenotecan did provide shrinkage for my husband and depending on the size of your husbands tumors may indeed place him as a candidate for surgery ... others will post with their personal experiences I am sure.  Courage and strength to you and your husband at this chalenging time. -- Cynthia

Kind words can be short and easy to speak, but their echoes are truly endless.

alexinlv's picture
Posts: 194
Joined: Jul 2010

Cynthia. thank you for the info about irinotican.  I read your profile page and  it is quite inspiring. I need that ! Thank you.  You two have been through it! 

Sundanceh's picture
Posts: 4410
Joined: Jun 2009

This one will tell us.  Irinotecan is a known tumor shrinker.  I've done it with success.  Many others have had multiple tumors all over and have had them shrink sufficiently to allow a resection of some type.

Recurrence is a tough avenue to negotiate, a good deal of the fighting happens right there at that corner.

Sometimes with cancer, we just have to keep banging away it and take parts of it away with each fight.

You'll find that as time winds on that friends/family will actually relate less and less....until they become only a memory. Folks just want it to go away...and when it doesn't fit under their timetable, they begin to peel back and distance themselves.  I guess the reminder is just too much for them to fathom. 

I guess they see themselves - through you. 

And folks get uncomfortable with that.  The first time is always Rah-Rah...subsequent adventures in the land of Recurrence net yawns - or worse yet...apathy. 

It's sort of like the Apollo moon missions...when we first landed, it was Hurrah...by the time they did the next few, nobody was listening...and nobody really cared.

What it is though...is they take things for granted.  But, it's human nature for them and if they are not afflicted, they simply can't grasp the concept and apprehensions of what you are facing - and are feeling.

My last fight the phone never rang...but they weren't really supportive from the get-go. 

Put 'em in your rear view mirror...say to yourself..."If you're not part of the solution - you're part of the problem. "

You and Tony handle this thing methodically and like a business...Two Inc.

It always boils down to that relationship anyway...that's the most critical one....when things go wrong there, that's when it's tough. 

Good luck and get after it:)  Hoping to hear good news after those treatments and subsequent scan.  Here's hoping for surgical intervention.


alexinlv's picture
Posts: 194
Joined: Jul 2010

Thank you Craig! how bad was irinotican for you?  You are spot on about friends and family thats why I love being able to come here and even post when I have the energy.  Thank you!! 

Sundanceh's picture
Posts: 4410
Joined: Jun 2009

My experience with Irinotecan was not pretty...

We run this one into the ground but it bears repeating...we all react differently...and I hope that's the case for Tony. 

Expect some fatigue and nausea and some diarrhea (even with meds)....expect some shrinkage too, if Tony responds positively to the therapy.  

Some of us do well with this one - and some of us suffer through it. 

It was difficult, but I made it through all 12.....and this was after a full open lung thoracotomy...the first 2 sessions of Folfir then break....6-weeks of radiation with 5fu 24/7. 

I was already Hurtin' for Certain... 

I'm hopeful that Tony does reasonably well with tolerating the treatment.

Friends & Family?

You and Tony keep it together...and let the rest fall by the wayside...

My wife and I have been a 2-man army the whole 9-years...it was only when she dialed out on me, that I began to feel sorry for myself and wanted to inject lost and false relationships in to substitute for the one relationship that I truly wanted and needed. 

Pulling for you both!  Nice talking with you today!

And...your most welcome! 

annalexandria's picture
Posts: 2494
Joined: Oct 2011

But if you can get up the energy to scream, you just go ahead and cut loose!  I've always said that I think being the caregiver may actually be harder than being the one sick.  Having done both, I feel there is nothing worse than standing on the sidelines and being unable to really help the person you love.  I only did two chemos and even that was utterly grueling, so I can barely imagine what you guys are feeling looking at number 4.  I have had several recurrences and surgeries, though, so I understand that feeling of complete frustration and sadness that comes with each new round.  I had to let myself move through those feelings, scream, cry, whatever I needed to do in the initial moment, and then grit my teeth and do what had to be done.  I know you guys will do the same.  It's not about being "strong" exactly, at least imo, it's more about having no real choice in the matter.  And I'm glad that surgery is still a possibility for your DH.  That's the one little bit of brightness in all of this crap that you can hold onto.  Many hugs coming your way~AA

Posts: 1502
Joined: Aug 2012

I'm sorry Alex - it sucks.   I understand what you mean about friends/family not relating and also wanting to scream.  Do you have a driving range near you?  Go hit a bucket or two of balls to get rid of some of that frustration. 

Hopefully they'll get him to a point where they can do surgery.   So scary and overwhelming, I know.

Hang in there. 

Posts: 2121
Joined: Oct 2011

Go ahead and scream. Cry too if you have to and let it all out. Recurrence is a terrible shock. I have had 2 and it gets harder each time. But eventually I start to fight again and with more of a vengence then the previous time.

Posts: 1170
Joined: Sep 2012

My husband, Steve, has tolerated Folfiri very well. No nausea, diarrhea etc....tired for two days after disconnect. He's had numerous problems lately due to blood clots, but has always tolerated the Irenotecan well. Knock on wood. It's been quite effective for him thus far. Good luck.

What Craig mentioned has got me thinking. Yeah, where the heck is everyone? At the beginning of this fight, people were so interested and supportive. People seemed to drop off along the way. Steve has actually noticed that when he is out walking around our neighbourhood, people will disappear into their house when they see him coming. I guess the harsh reality is difficult for many to deal with. Our cheering squad has really diminished over the past couple years.


belindahill's picture
Posts: 144
Joined: Jan 2011

Hi Alexinlv, my husband was on this same combo of chemos, then changed to this drug plus avastin and xeloda he has has 4 rounds so far. Had ct scan last week gets results tomorrow, we are hoping for good news and that the cancer has stayed stable. This drug has been very hard on him, lost his hair, loose stools and sickness, also very tired! Wishing you all the very best. Take care. 


Posts: 2121
Joined: Oct 2011

I pray that your husband gets good scan results.

AnnLouise's picture
Posts: 276
Joined: Mar 2013

It can be so discouraging to find yourselves back in the battle.....it doesn't get easier. I had a recurrence of liver mets three months after a liver resection. I had SIRT in Nov. and Dec. and Pet scan in March showed no mets in liver. I am having radiation on lung met which I started today. Hope for good scans and results on chemo. I am on xeloda 4th round. Have not been on irinotican so can't help with that.... Any questions, please feel free to ask.       ~ Ann

devotion10's picture
Posts: 640
Joined: Jan 2010

my husband, at 71, tolerated it quite well.  I am not sure why it varies so much between individuals, but he had very little diarrhea and only a little stomach cramping.  He did lose his hair, but now three months since he ceased the treatment quite a bit has grown back in.  He also had no suppression of his immune system during treatment.  There were a few times earlier on when he experienced a fever within the first 24 hours after treatment.  He was given anti-nausea meds at the time of treatment that would carry through for the first few days and then Lomotil would take care of any problems after that.

So you see ... it really can vary so much between individuals.  I just want you to have some hope, but you will just have to wait and see how he fares.  Best of luck to you both.  -- Cynthia


The most genuine acts of kindness are done without fanfare and when no one is looking.




Posts: 254
Joined: Aug 2011

So sorry to hear this news.  I was wondering how you were doing.  My husband has been on FOLFIRI since last April with 2 short breaks.  It has shrunk his tumors and got his CEA down to 1.5 while he is on it.  He has tolerated it well with only some fatigue and recently more problems with cuts one his hands and feet from the 5FU.  I think it is starting to loose its effectiveness now since it has been a year and his last scan showed new tumors in his liver.  We are back in the battle also and I understand completely about family and friends not being able to relate.  It gets old hearling that "be strong" line. Make me want to scream or worse yet hang up the phone!  So sorry that you all are going through this right now but praying that this chemo works for Tony.  I have read so many success stories with it.  Please keep us posted.  Hugs, Teri

PhillieG's picture
Posts: 4712
Joined: May 2005

I'm stage IV CC, DX Feb 2004. I've been on Erbitux and Irinotecan for 5+ years and it's done a very good job at keeping things under control and very manageable. I'm down to one lymph node that's affected. I hope your husband has good success with his treatments. I certainly know it's not easy at all and there's the need to blow off steam. Overall though, trying to keep as positive an attitude as possible (I believe) is extremely crucial in getting through this...

barbebarb's picture
Posts: 464
Joined: Oct 2011

So sorry for your husband's reoccurance.
My reoccurence was in Dec., after a couple months of NED.
Currently on the I drug and 5FU-they can give you atropine as a pre -med if any gastro issues, such
as cramping. Have had four cycles with shrinkage and cea is dropping. We are watching a left lung nodule
and small liver tumors. This chemo has been easier - appetite is good and just some fatigue after pump is dc'd
Its very discouraging when reoccurence occurs. I understand. You have to pick yourself up and start over again.
My family says things like they are afraid to ask questions or they dont understand - lame things...very hurtful.

It's good this is another option.
Wishing him the best moving forward.


KayeKay's picture
Posts: 122
Joined: Jan 2013

im sorry to hear this. i cant really offer much other than support and letting u know im here with my 2nd battle with cancer. i have only had experience with oxy and i think they are gonna do oxy again. but i do know that sometimes the cancer will return in resectable places like mine did and this is a good thing. i just had my 2nd liver resection. sending best wishes your way!

Maxiecat's picture
Posts: 544
Joined: Jul 2012

My family experience is similar to those of other...they either don't call or they try to avoid the topic when we do talk.   I had not talked to my brother is about 4 months...left him messages.  My folks don't really listen to what I have to say when I do talk about the cancer.  Al I get is that you have to be positive and that they are praying for mbeen and then they are off talking about their next vacation.  My husband has been so busy at work lately...lots of business trips...that most days I don't have anyone to talk to.  I am trying to keep busy.  Right now I am waiting for the other shoe to drop..IMO dr is concerned about my back pain and rising CEA...I am getting a CT scan done this week and then possibly an MRI.  We will see if they reveal anything or not.  I finished up chemo in January... So I have had a 2 month break.   Hopefully, it is nothing and I can relax a little.  


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