New Stage IV Looking for Positive Stories

First, I would like to thank you for your service to our country. It is truly appreciated!!! Your strength will help you through your new battle.....and we are all here to help you!! Although we all have a different story, there is a common thread, that binds us together. I was diagnosed in Nov. 2011 with stage IV colon cancer with mets to liver. I had colon surgery followed by 6 months of xeloda, oxy, and avastin. Then liver resection in June but the mets returned by Sept.. I had SIRT to the liver in Nov. and Dec. and pet scan in Mar, showed liver clear. In Jan. CT scan showed mets to lung and abdominal wall....just finished radiation today. There have been many ups and downs in the last 18 months but I am enjoying my life. I understand about wanting to be there for your children...I have 5, but they are older, youngest is a junior in HS.  Any questions, just ask..... .sending positive thoughts!  ~ Ann

Greetings Tom

Sorry you have to join this club, but you will find comfort, knowlege and ideas here. Sometimes it can get depressing, sometimes it can get confrontational and most of the time is very informational.  I don't write as much as I used to, but in my first six months I was completely addictied to this site.

I had non-hodgkins lymphoma back in 1989. Had 4 months of intense radiation and it killed the cancer. 

23 years later... (November 2011) a large tumor in the transvers colon, that had metastised to the liver. the words "countless tumors in the liver" is what I heard. About a dozen that were 7x5x4cm each, and another dozen that were like 2x2x2cm each and then "hundreds" of "microspots". The first oncologist didn't give me a flying chance in hell for survival. Fired that guy and went searching for a doctor with an agressive attitude.  Surgery to resect the colon and add the Bag December 2011. Folfox & Erbitux from Jan 3, 2012 to July 3, 2012. This treatment knocked the cancer in the liver back by over 75%!!  great news. But, chemo alone wasn't / isn't going to kill this stuff. 

July 2012 got rid of the bag and began Xeloda and Avastin. had that from September 1, 2012 to Feb 28,2013. It worked for the first 4 months, but during Jan and Feb, the cancer learned to grow around those drugs.  

I've been off chemo now for five weeks... and on Apirl 18th I am getting Radioembolization (aka: y90, SirSpheres) treatments to the liver. Since I had so many tumors in my liver, they classified me as "inoperable". So surgery wasn't in the cards.  The doctors said that the chemo path i was on had stopped working. I had been searching and searching for other options. Liver directed treatment options. (instead of Live On Chemo)

Came to the conclusion that i have three options for liver directed treatments, and none of them are done in my city. Radioembolization/y90 or CryoSurgery or HAI Pump.

I can always go back to the chemo's but my plan is to burn the hell out of these liver tumors with y90. Then, see how this works. then, if that doesn't work... freeze them with KryoSurgery and if that doesn't work... HAI Pump or back to chemo.  Never going to stop fighting.

I'm glad you exercise and eat well. Honestly, I didn't do that before... but am doing a better job now. But, during chemo... I took the path of "if i sounded good, and if i felt i would be able to hold it down... I ate it!"   

I was 47 when diagnosed... wife and 4 kids and i've worked in and owned a small business all my life.  Lots of poeple looking to me to make it rain.  Its been an amazing adjustment of life and attitude. A wonderful experience for me and everyone around me to put life in perspective. (wait... did I just say this was wonderful)... crazy, right?

I've changed. And, I'm comfortable with what's happening. (it has taken me a long time to get in this space) But I feel I'm just getting started at the good side of the changes. 

Having those kids is and will be your motivation to beat this crap. The odds are against us... (yes, we're not supposed to read those, but I'm sure you have). We must be willing to face the odds, and work like hell to prove everyone else wrong. My motiviation in my kids and my wife. I want to meet Jesus... just not yet!!  Being curious and investigative will also get you a long way. Ask lots of questions and be your own advocate. If you don't like something you hear from a doctor, ask questions. And, if you're not getting the answers you like or that you understand... ask another doctor.  These doctors aren't perfect. So, you have to be your own advoate.

You sound like you're doing the right thing... keep it up. Be sure to get plenty of sleep, and if you cannot stay asleep... or fall asleep... tell a doctor and get some meds or some natural stuff to help you sleep. About four months into my battle... sleep became a huge problem for me, and lack of sleep added to the stress and fear of dying can really screw things up.  Don't be affraid to ask for help, and take the help too!

I pray often for everyone on this board. And, now you're added not only to my prayer list... but to many others here.  Keep your head up and lift others who will soon hold you up. You'll find as a dad and leader, you'll have to help others deal with your cancer. Its a strange thing, but by helping others... you are inturn helping yourself.

I have a blog that I started when I started this battle... my orginal purpose of the blog was to keepe facts straight and the rumors down amoung my kids friends, families and throughout our small area. Rumors can make people look at you like you have two heads... I shared my story along the way and it became something bigger as people whould ask me how i think or how I feel... so I shared that. And, it snowballed from there.

But, this blog has done exactly what I wanted it to do and more. It built a core for conversation for my kids and their friends, teachers and coaches so they had the FACTS! there wasn't quesitons of "how's your dad doing"  Instead it was "I read your dad's post... I'm praying for him and I'm here for you!"  It made it much easier on my kids, my wife and their friends.  The rumors and worry and concern to ride on a kid, (no matter what age) and I felt it was better to keep it out there. Here's the link: http://www.caringbridge.org/visit/joemetzger

And, one more idea...  don't hold anything in. Stress and worry is the last thing we need. So, let it out man... let it out!

hugs to you and your family.

Joe

I was 46 and in good shape with no health issues when I was diagnosed with Stage IV CC back in Feb 2004. I've been in an unusual situation where I've been in treatment throughout the nine years. I also was able to avoid the bag (which is not the end of the world from most everyone on this board say), and during my initial surgery after doing six months of chemo to shrink my liver tumors, I had an HAI pump installed which delivered a higher chemo dose directly to the liver without harming other cells. My liver's been fine ever since.

I then had to deal with lung mets for the next 6-7 years. I went on Erbitux and Irinotecan at that point and am still on them. The treatment is totally manageable (for me at least) but there were a few bumps in the road.

Now I'm going to have radiation on one lymph node where my bronchial tube splits to the lungs. It's three 20 minute doses spaced a day apart. If things go as planned, I could be off chemo for a while...

While the length of my journey may not seem positive to some, it's a situation where it's been a slow but steady improvement and it's also a situation where I've maintained a relatively normal life. My sons were 10 & 4 when I was diagnosed, now my older son is in college and my younger son is in the 7th grade. While I know it's affected them, I never let cancer define me and by doing that they've yet to have any serious issues and are High Honor students. I'm a big believer in not seeing myself as a victim. I could never understand how that helps anyone but that's never stopped people from feeling victimized. People sometimes get cancer...I'm one of them. That's that is how I see it.

Cancer is so different from person-to-person. What works for one may not work for another. Not that there's ever a GOOD time to get cancer, there have been many advances in treatments as far as targeted therapies go over the past decade which I've been fortunate to utilize with positive results. I've also found that cancer has not been all bad for me (others can find no silver lining but I think it's tied to how some people are in general. Cancer or no cancer they're just miserable...) While I've always been appreciative of the things I have, having a "brush with death/wake up call" has made me look at my life more closely and really appreciate the little things...

I wish you well. I'd like to offer one suggestion...get the best doctors you can get. It can make all the difference in the world!

~phil

PhillieG said:

Hi Tom

I was 46 and in good shape with no health issues when I was diagnosed with Stage IV CC back in Feb 2004. I've been in an unusual situation where I've been in treatment throughout the nine years. I also was able to avoid the bag (which is not the end of the world from most everyone on this board say), and during my initial surgery after doing six months of chemo to shrink my liver tumors, I had an HAI pump installed which delivered a higher chemo dose directly to the liver without harming other cells. My liver's been fine ever since.

I then had to deal with lung mets for the next 6-7 years. I went on Erbitux and Irinotecan at that point and am still on them. The treatment is totally manageable (for me at least) but there were a few bumps in the road.

Now I'm going to have radiation on one lymph node where my bronchial tube splits to the lungs. It's three 20 minute doses spaced a day apart. If things go as planned, I could be off chemo for a while...

While the length of my journey may not seem positive to some, it's a situation where it's been a slow but steady improvement and it's also a situation where I've maintained a relatively normal life. My sons were 10 & 4 when I was diagnosed, now my older son is in college and my younger son is in the 7th grade. While I know it's affected them, I never let cancer define me and by doing that they've yet to have any serious issues and are High Honor students. I'm a big believer in not seeing myself as a victim. I could never understand how that helps anyone but that's never stopped people from feeling victimized. People sometimes get cancer...I'm one of them. That's that is how I see it.

Cancer is so different from person-to-person. What works for one may not work for another. Not that there's ever a GOOD time to get cancer, there have been many advances in treatments as far as targeted therapies go over the past decade which I've been fortunate to utilize with positive results. I've also found that cancer has not been all bad for me (others can find no silver lining but I think it's tied to how some people are in general. Cancer or no cancer they're just miserable...) While I've always been appreciative of the things I have, having a "brush with death/wake up call" has made me look at my life more closely and really appreciate the little things...

I wish you well. I'd like to offer one suggestion...get the best doctors you can get. It can make all the difference in the world!

~phil

Love the shirt. Good luck with your treatment.

I think you have found your way to the most complicated yet the most understanding group of people ... and I LOVE THEM ALL....

You will too...

I am stage 4 now with mets in my lungs since 2012. but in 2010 when i was diagnosed I was stage 2. This journey though dreadful for some I have been quite lucky I have no real upsets.. yes I wound up with the colostomy many have been able to avoid.. but truly I think the pouch is a blessing I was given in this journey.. I continue to work f/t and and I have a life.. I am not tied to a bathroom or my home.  I can eat pretty much anything I want and yes I am on chemo for life but the sideeffects only mean I AM STILL ALIVE..

I think the mental part of cancer is worse than the physical parts - the the physical parts will wear you out and down at times .. I believe I have to pick myself up.. dust myself off and start all over again. So here I AM.. and thanks to many of the people on this site a little smarter and sensitive to the situation of others and myself. I don't consider myself religous but am spiritual and others on this site I have found to be the same.. and I think its the key... Stay focused and positive and above all LOVE Yourself.  I hope you find the same here..

-Donna

dmj101 said:

Welcome Friend

I think you have found your way to the most complicated yet the most understanding group of people ... and I LOVE THEM ALL....

You will too...

I am stage 4 now with mets in my lungs since 2012. but in 2010 when i was diagnosed I was stage 2. This journey though dreadful for some I have been quite lucky I have no real upsets.. yes I wound up with the colostomy many have been able to avoid.. but truly I think the pouch is a blessing I was given in this journey.. I continue to work f/t and and I have a life.. I am not tied to a bathroom or my home.  I can eat pretty much anything I want and yes I am on chemo for life but the sideeffects only mean I AM STILL ALIVE..

I think the mental part of cancer is worse than the physical parts - the the physical parts will wear you out and down at times .. I believe I have to pick myself up.. dust myself off and start all over again. So here I AM.. and thanks to many of the people on this site a little smarter and sensitive to the situation of others and myself. I don't consider myself religous but am spiritual and others on this site I have found to be the same.. and I think its the key... Stay focused and positive and above all LOVE Yourself.  I hope you find the same here..

-Donna

I forgot to mention.. CEA is not reliable for me either.. mine is actually UNDECTIBLE.. <.5 now -and before chemo sat at 2 which is considered normal no cancer.. so CEA means nothing for me.. Biopsy's found my cancer.

tomwade123 said:

In The Company of Heroes

Thank you to all who have shared such powerful and personal stories.  The amount of positive energy being shared here cannot possibly be equaled by anything cancer can throw at us.  We'll fight this together and we'll take it to the finish line!  Thanks again and I look forward to passing on my anticipated positive stories to inspire others they way you all have inspired me!

Semper Fi,

Tom

swimmer22 said:

I was diagnosed with rectal

I was diagnosed with rectal cancer December 2010-- Stage IV from the beginning with a lung met. I started with VATS surgery in February 2011 to remove the lung met followed by 6 treatments of Folflox. A CAT scan showed my rectal cancer had also decreased in size from the Folfox. I then progressed to 28 daily treatments of radiation while taking Xeloda (oral chemotherapy). I was fortunate to have a complete response to the chemo/radiation. In September 2011, I had a LAR surgery to remove the scar tissue of where the tumor had been located (also resulted in a temporary ileostomy). Pathology from surgery was clean with no evidence of involvement in any lymph nodes.

I then completed 12 rounds of Folfiri that ended in April 2012. In July 2012, I had my temporary ileostomy reversed. My scans have all shown NED since completion of chemo/radiation. I have just been released to follow-up scans once every 6 months. I had been PET scanning every three months up to this point. They just removed my port last Monday, almost one year since my last chemotherapy treatment.

I am very fortunate. When I started out with my diagnosis at age 47 two and half years ago, my initial prognosis was not good. I was able to fight through the surgeries, chemotherapy, and worked hard to maintain a very positive attitude through it all. I kept working through it all - only missing two weeks for both the VATS and LAR. I was back to work in 4 days from my ileostomy reversal. Granted I have a professional office position. If I had to perform physical work, I would have needed to take more significant time away from work.

I hope this encourages you... I am scared to even share my story at times. I know the hardships folks on the board are going through and I do not want to appear boasting. Through a lot of prayer, great doctors, and excellent care I've come out on the other side of a Stage IV situation. I completely understand the cancer can show up again at any point; however, if it does I know that I have been blessed to have achieved this remission. Best of luck to you.

 

You are not boasing at all. We all need your story of treatment and survial.  You have worked hard to be where you are now. For some, it would be easy to sit back, feel sorry and let nature lead us into the inevetable. 

I, for one, am grateful for your sharing.