Devastated by husbands stage IV

Madmom

My husband (46) has been diagnosed with stage IV colon cancer with mets to liver (one primary and two smaller “satellites“- I may not have that right). This started out a year ago as stage 3, had the colon resection, chemo and was cancer free for several months until wham! All three lesions, spots whatever you want to call them were cut out on Thursday.  Then more chemo is planned after that. I read survival statistics that terrify me-14% make to five years?! I can’t sleep at night and i can’t stay off the Internet- neither of which is health! We have two children and I do not want I lose this guy!  I need to hear really good survivor stories or I’m going to lose my mind!

Twinzma

Your husband is NOT a number,

Your husband is NOT a number, neither is mine. Don't pay any attention to the stats. When you read them you don't know the ages, prior health issues anything. In other words It's not a one size fits all. My husband is 55 has 30 mets on liver. He's a fighter and will beat it. You believe it too. The power of positive thinking & prayer are more powerful than medicine alone. I do know how the devastion felling. That was me, some days it is me. We have twins that just turned 12. You hang in there and come here for support. Keep a smile, stay strong, don't dwell and most of all take a breath and just breath. He needs you now more than ever. Best of luck.

 

caregiver3

So sorry!

Hello!  So sorry you have to be here.  My husband who is 49, was diagnosed in September last year.  We have 3 kids.   Started out being 3b, but we quickly found out it was stage 4 with mets to the liver and possibly the lungs too.  I know and understand how scared you are.  I am scared every single day.  Some days are better than others though.  I can't give lots of advice because this journey has just started for us too!  We are still waiting on all the answers.  He had a colon resection 10/17, and he just finished 6 rounds of FOLFOX with 3 cycles of Avastin.  A tumor board has his case right now and we are waiting to hear what the plan is. The hardest part for me is the waiting for results and answers on everything.  I've read all the bad stuff too on the internet about stage 4, and it is hard to see.  But, I pray a lot and just try to be as knowledgeable and supportive as I can be.  And this board is great and lots of support here! 

Lily Flower

So sorry to hear what you're

So sorry to hear what you're going through Madmom but we all come here for support, advice and updates. I don't believe the stats on the internet are accurate, it is not current and the world of medicine have advanced so much that it is even helping patients with advanced cancer. Don't read up too much on the internet, it is going to stress you out. The more you read the worse you'll feel. I've been there. When I first found out I have a malignant tumor in my sigmoid colon, I couldn't stop reading WebMD and almost gave myself a heart attack reading it. Then I found this forum and it gave me hope. Take care of yourself because your husband is going to need you while going through all the treatments. Attitude plays a great part in healing and I truly believe that. All the best to you and your husband!

abita

I am too stage 4 diagnosed.

I am too stage 4 diagnosed. My tumors are currently out, and I am doing the mop up chemo. When I think about the possibility of recurrence down the road, I think about the vaccine that is about to go to human trials and othe innovations that might come out. There is always hope, even when darkest. 

Noneya

From a Husband

  I'm the husband and found out my colon cancer went to lungs and liver.  First thing to tell you is that most info on the net is years 5 or more outdated. My wife and older kids are now banned from Webmd and sites like that. First I was given no hope as three different DR.s gave me less than two months the third DR. said she would treat to cure but it would be hard on me we went with her. I felt more comfortable with worst case try than just set affairs in order. We sat down with her and several different assistants including a grief counselor. Scott the counselor said one thing that has helped more than everything else " don't let others create your reallity". My wife now has joined my obsession for food storage for things that have a twenty year storage span like beans and rice, each package we put a note in that we want to remind us of what we look forward to doing in the future. So create your on reallity and if you need help come back here the people are great and more informed than other websites. By the way my Dr. who seemed to never smile was all grins this week as She got to give me good news as the markers had improved srasticly in the last two batteries of test and yes I'm past the best by date of 2 months and we discussed the next six months of treatment. Not great but getting better. I hope that you and yours get through this and feel free to be upset but realize that medical people only keep rates of survival on a five year plan and that many strides have been made in the last years that are increassing survivor rates. Best yet is sites like this have 20year+ survivors here that can give you hope.

beaumontdave

I'm one of those stories you

I'm one of those stories you want to hear, considering the similarities to your man's diagnosis. I had a colectomy of the sigmoid section, did the Folfox, at a year my CEA was slowly rising, at two years they biopsied the "cysts in my liver" and came up negative, 6 months later they biopsied again, now calling them lesions that were positive. So around 3 years out from initial diagnosis they took three "scoops" out of my liver. My CEA test came down, but never stayed there, so another slow rise with tests and watchful waiting untill 2 1/2 years later they had a single 3.5cm mass that they removed at around 3 years out from the last surgery. That was Sep. 2014, I'm at 3 1/2 years past that, NED and my CEA finally settled down to a 2.2-2.8 constant. So I'm almost 10 1/2 years from initial diagnosis and clear of any cancer. For better details click on my blog name. Sorry you have to deal with this stuff, but forget the survival rates, your man can beat this....................................Dave

Annabelle41415

Internet

Please stay off the internet searches.  They aren't reliable and so outdated and not acccurate.  If your husband has had it "cut out" then that is very good as it will be the best chance for survival.  Whatever follow up treatment they schedule is good because they want to capture any cells that might have been released during surgery.  It sounds like a good plan.  Wishing the best for you both.

Kim

Madmom

Twinzma said:

Your husband is NOT a number,

Your husband is NOT a number, neither is mine. Don't pay any attention to the stats. When you read them you don't know the ages, prior health issues anything. In other words It's not a one size fits all. My husband is 55 has 30 mets on liver. He's a fighter and will beat it. You believe it too. The power of positive thinking & prayer are more powerful than medicine alone. I do know how the devastion felling. That was me, some days it is me. We have twins that just turned 12. You hang in there and come here for support. Keep a smile, stay strong, don't dwell and most of all take a breath and just breath. He needs you now more than ever. Best of luck.

 

Thank you!

Breath. Breath. Breath.  One foot in front of the other. This is what I am telling myself.  I wish you and your husband all the best as well!

 

Madmom

caregiver3 said:

So sorry!

Hello!  So sorry you have to be here.  My husband who is 49, was diagnosed in September last year.  We have 3 kids.   Started out being 3b, but we quickly found out it was stage 4 with mets to the liver and possibly the lungs too.  I know and understand how scared you are.  I am scared every single day.  Some days are better than others though.  I can't give lots of advice because this journey has just started for us too!  We are still waiting on all the answers.  He had a colon resection 10/17, and he just finished 6 rounds of FOLFOX with 3 cycles of Avastin.  A tumor board has his case right now and we are waiting to hear what the plan is. The hardest part for me is the waiting for results and answers on everything.  I've read all the bad stuff too on the internet about stage 4, and it is hard to see.  But, I pray a lot and just try to be as knowledgeable and supportive as I can be.  And this board is great and lots of support here! 

The waiting is agony!

Ugh. Sounds like our situations are very similiar   This is a club that I really do not want to belong to but I am already seeing how helpful this board will be.  Thank you for your response and I wish you and your family all the best!

Madmom

Lily Flower said:

So sorry to hear what you're

So sorry to hear what you're going through Madmom but we all come here for support, advice and updates. I don't believe the stats on the internet are accurate, it is not current and the world of medicine have advanced so much that it is even helping patients with advanced cancer. Don't read up too much on the internet, it is going to stress you out. The more you read the worse you'll feel. I've been there. When I first found out I have a malignant tumor in my sigmoid colon, I couldn't stop reading WebMD and almost gave myself a heart attack reading it. Then I found this forum and it gave me hope. Take care of yourself because your husband is going to need you while going through all the treatments. Attitude plays a great part in healing and I truly believe that. All the best to you and your husband!

You are so right!

I learned to only search about SUCCESSFUL stage 4 cancer recoveries.  There are many out there! We certainly try to maintain a positive attitude-especially for our kids.  Whenever the other starts stressing about a uncertain future we remind each other that all is good today and we can only take it one day at a time.    Thank you for your response!

Madmom

abita said:

I am too stage 4 diagnosed.

I am too stage 4 diagnosed. My tumors are currently out, and I am doing the mop up chemo. When I think about the possibility of recurrence down the road, I think about the vaccine that is about to go to human trials and othe innovations that might come out. There is always hope, even when darkest. 

Intrigued!

Sorry about yur diagnosis.  I have not heard about the vaccine.  My husband's doctors also remind us that new developments are being made every day. We remain hopeful!  I wish you all the best as you embark on this journey!

Madmom

Noneya said:

From a Husband

  I'm the husband and found out my colon cancer went to lungs and liver.  First thing to tell you is that most info on the net is years 5 or more outdated. My wife and older kids are now banned from Webmd and sites like that. First I was given no hope as three different DR.s gave me less than two months the third DR. said she would treat to cure but it would be hard on me we went with her. I felt more comfortable with worst case try than just set affairs in order. We sat down with her and several different assistants including a grief counselor. Scott the counselor said one thing that has helped more than everything else " don't let others create your reallity". My wife now has joined my obsession for food storage for things that have a twenty year storage span like beans and rice, each package we put a note in that we want to remind us of what we look forward to doing in the future. So create your on reallity and if you need help come back here the people are great and more informed than other websites. By the way my Dr. who seemed to never smile was all grins this week as She got to give me good news as the markers had improved srasticly in the last two batteries of test and yes I'm past the best by date of 2 months and we discussed the next six months of treatment. Not great but getting better. I hope that you and yours get through this and feel free to be upset but realize that medical people only keep rates of survival on a five year plan and that many strides have been made in the last years that are increassing survivor rates. Best yet is sites like this have 20year+ survivors here that can give you hope.

Great advice!

I really like that quote "don't let others create your reality"!  Staying off those websites is hard!  I'm glad that I found this site as I need real encouragement from real people...not statistics.  I wish you all the best and I hope you continue to get good news and only make forward progress!!

Madmom

beaumontdave said:

I'm one of those stories you

I'm one of those stories you want to hear, considering the similarities to your man's diagnosis. I had a colectomy of the sigmoid section, did the Folfox, at a year my CEA was slowly rising, at two years they biopsied the "cysts in my liver" and came up negative, 6 months later they biopsied again, now calling them lesions that were positive. So around 3 years out from initial diagnosis they took three "scoops" out of my liver. My CEA test came down, but never stayed there, so another slow rise with tests and watchful waiting untill 2 1/2 years later they had a single 3.5cm mass that they removed at around 3 years out from the last surgery. That was Sep. 2014, I'm at 3 1/2 years past that, NED and my CEA finally settled down to a 2.2-2.8 constant. So I'm almost 10 1/2 years from initial diagnosis and clear of any cancer. For better details click on my blog name. Sorry you have to deal with this stuff, but forget the survival rates, your man can beat this....................................Dave

Just what I needed!

First, congratualtions on your recovery!  I hope that you only continue down that path. 10 1/2 years is so fantastic and give me and I am sure many others the hope that they need!  A million thanks for sharing your story with me

Madmom

Good advice!

Yes, I know...stay off the internet...so hard though.  But you are absolutely right.  We got the pathology report back today and all three tumors that were taken out had clear/clean margins so that was good news to hear.  Not looking forward to more chemo for him but at this point we must do everything we can to make sure it doesn't come back! 

 

optimist777

Don't look at statistics

Madmom, I was diagnosed stage4 at age 35, and have been battling this disease for over 9 years.  In my opinion I was a very unusual case, because I was so healthy prior to this diagnosis, which was part of the reason I caught it so late.  I've been on and off chemotherapy ever since, until now they have nothing left to give me.  Still, I'm doing my best to stay positive, and I realize how hard that is.  But, there is always hope, and while it may be too late for me, I'm confident if you just hang in there, there is major advances coming in the next five years.  I'm new to these boards, and to be honest I think these cancer boards can almost be more of a negative thing then a positive, because they can be kind of depressing reading all these posts.  (But everyone is different-- and some people find having a network of supporters helpful)  Just remember you're husband is a unique individual not a statistic-- and his biggest asset is positive thinking. 

abita

Madmom said:

You are so right!

I learned to only search about SUCCESSFUL stage 4 cancer recoveries.  There are many out there! We certainly try to maintain a positive attitude-especially for our kids.  Whenever the other starts stressing about a uncertain future we remind each other that all is good today and we can only take it one day at a time.    Thank you for your response!

I am with you there. I want

I am with you there. I want to hear the success stories!!! I am mostly positive. I had a colon resection in Oct. 4 rounds of Folfox. Liver resection to remove those tumors in Jan. I am finishing the 8 rounds of "mop up" chemo now because I feel good about my chances to live a long, healthy life when I get past this bump.

Madmom

Wow!

9 years!!! Wowza you truly are a success story. I am so sorry to hear that you have run out of options now though.  Don’t give up! If you have come nine years you can get nine more.  Ugh never enough time though right? Even if they told my husband today that he had 10 more years I would still be equally devastated and say that’s not enough.  Fight like hell!! Those medical advances can’t come soon enough!  I wish you the very best!

JanJan63

You've come to the right

You've come to the right place. Breathe deep and know that stage four is not as bad as it sounds. There are several people on here who have been stage four for a long time. I am stage four myself but it's only been five years for me so far. Surgery is the first and best treatment for cancer and then there are chemos that are quite effective as well. Some are easy to go through and others are unpleasant but it all helps. There are other options as well but it's too soon to worry about all the various things that can be done. It's overwhelming. 

Soon you'll be an expert and know a lot more about cancer than you ever imagined. Knowledge is power, as they say, the more you know the more confident you'll both feel. And please try to avoid googling it. It's confusing, out of date, might not be true, and information is better coming form somene who has actually experienced something rather than medical reports. 

Keep track of everything. His treatments, his specialists contacts numbers, all that stuff. I didn't and I regret it. Half the time I can't remember what chemos I've been on or when. At first it just seems like so much but eventually you start to decompress and life goes on. I'm different than I was but I'm still here. I'm not on my deathbed. My quality of life isn't what it was but it could be so much worse. I do not and have never thought of myself as a cancer victim, I'm just me with a chronic illness that I deal with.

Take care of yourself, being a caregiver is a tough job.

Jan

Twinzma

Noneya said:

From a Husband

  I'm the husband and found out my colon cancer went to lungs and liver.  First thing to tell you is that most info on the net is years 5 or more outdated. My wife and older kids are now banned from Webmd and sites like that. First I was given no hope as three different DR.s gave me less than two months the third DR. said she would treat to cure but it would be hard on me we went with her. I felt more comfortable with worst case try than just set affairs in order. We sat down with her and several different assistants including a grief counselor. Scott the counselor said one thing that has helped more than everything else " don't let others create your reallity". My wife now has joined my obsession for food storage for things that have a twenty year storage span like beans and rice, each package we put a note in that we want to remind us of what we look forward to doing in the future. So create your on reallity and if you need help come back here the people are great and more informed than other websites. By the way my Dr. who seemed to never smile was all grins this week as She got to give me good news as the markers had improved srasticly in the last two batteries of test and yes I'm past the best by date of 2 months and we discussed the next six months of treatment. Not great but getting better. I hope that you and yours get through this and feel free to be upset but realize that medical people only keep rates of survival on a five year plan and that many strides have been made in the last years that are increassing survivor rates. Best yet is sites like this have 20year+ survivors here that can give you hope.

Your Idea

I like your idea of the 20 year storage span. Maybe though I will tweak it a bit. Our goals, travel, fishing trips etc..... set it up as a collage of sorts. Bora-Bora, Italy, Alaska. His fishing destinations with a navigational map. Ahhhhhh my friend yet again you come through. I hope for you the best. My husband and you, both diagnoised so clsoe and so advanced. I look at your photo and like think that you are one tough fighting SO*.....like my husband and you both are kicking your cancer to the curb. 

mikew42

Long time survivor

Madmom, I have not been to this forum in years, but somehow wanted to check in. In 2004, I was where your husband is at. I was early 40's, Stage 4, 3 mets to the liver. Went through radio frequency ablation and chemo. Remission for 7 years and then 3 more spots to the liver. Had a liver resection and chemo again and have been in remission for another 7 years. There are other stories like mine out there. I hope this gives you and your husband some hope. Mike