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New Stage IV Looking for Positive Stories

tomwade123's picture
tomwade123
Posts: 9
Joined: Apr 2013

I am a 45 year old very fit male who was diagnosed with colon cancer in January of 2013.  I had been working overseas in Thailand when it was found and came back to the United States for treatment.  On 5 Feb I had my right colon resected (no bag thankfully).  They removed 47 lymph nodes of which 30 were positive with cancer.  Addtionally they found a small spot on my liver and removed it which also came back positive.  The exciting part of this was that we thought that was it.  But a PET scan less than 4 weeks after the surgery found 3 very subtle spots on my liver and so I'm on FOLFIRI for at least six months.  I get my next PET scan the beginning of next month so we are hoping for something positive out of it.

My question is since I'm relatively young and in great shape (exercised twice per day every day before this happened) eat all the right things, and am now juicing and concentrating on increasing my alkaline intake vs acid intake, what are some of the positive stories out there for motivation?

I have a 14 year old son, a 12 year old daughter, and an 8 month old daughter (yep, a young one).  They mean the world to me and I want to be there for them for as long as possible.

I was in the Marine Corps, so I am a fighter and certainly no quitter.  I feel I can handle whatever is thrown at me.  I'm also a God fearing man with a lot of faith in our Lord Jesus.

All of that aside, I would love to hear about some inspiring stories of stage IV survivors and to make life long friends along the way.  I'm as loyal as they come and will spill my guts to any who would like to hear.

 

Cancer may bring us all together, but strength will keep us that way.

Tom

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Sounds like you are already well on your way...

Loyalty and Spilling My Guts can be found all over this particular forum...my whole life story is here....I've spread it over 3700+ posts:)

You can click on my avatar name to get a brief summary of what I've done...and you can search by username as well...lots of stuff.

I'm a metastatic stage IV...have had cancer 3x now...in just short of 9-years...currently in the longest remissive state of my entire fight...and the battle is being won in the later years of the battle...instead of upfront, where one might expect it.

I know how to fight too...and fight long....and fight hard...in the end, I outlast just about everything.  That's the key to winning this cancer battle...Outlast!

Welcome aboard!

-Craig

 

tomwade123's picture
tomwade123
Posts: 9
Joined: Apr 2013

Craig,

It is an honor to meet you.  I really appreciate hearing about your ongoing battle and your amazing attitude towards it.  I have no doubt that with heroes like you to lean on I can help lead the next wave of assault on this terrible disease.  We will beat it!

Tom

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Hi!  I am Stage 3 but I have a friend who's husband had had stage 4 twice and has Crohn's disease and he has been cancer free for a while now.  We must never give up!  BTW.....thanks for your service.  I'm an Army brat and appreciate all our armed forces.

tomwade123's picture
tomwade123
Posts: 9
Joined: Apr 2013

Very great to hear your story.  I am so happy that your husband is again cancer free.  The fight continues for all of us.  I appreciate your acknowledgement of my service, but as an Army brat your involuntary service means as much, if not more, to those in uniform!

Randy33
Posts: 63
Joined: Jan 2011

I am Stage IV and have been NED for over 4 yrs. I had a tumour on my liver and also my lymph nodes. I had 10 rounds of Folfox + Avastin after which the tumours had disappeared. I was determined not to have a recurrance so I have been doiung everything I can to fight it. My program is:

    1. Exercise 3 hrs/day

    2. Eat a Mediterranian diet

    3. Take the following supplements: aspirin, multivitamin, reviratrol, grape seed extract, Vit D3, fish oil, and Co-Q10.

    4. Avoid stress

    5. Prayer

    6. Visualize my antibodies attacking cancer cells

So far its been working for me. I am 62 and feel great. Good luck in your fight.

        Randy

 

tomwade123's picture
tomwade123
Posts: 9
Joined: Apr 2013

Thank you for your response.  It is stories such as yours that give real power and belief that this disease is not only manageable, but beatable.  Nothing is as strong as the human spirit, especially when we keep God close to our hearts.

I will take your advice, Randy.  Exercise is one of my favorite things in life and am now nearly fully able to hit it hard now that I am 2 months post surgery.  I don't want to push too hard and risk a sports hernia, but it does feel great to get that heartrate up!

I do take a multivitamin, vitamin C, curcument from tumeric root.  I don't know what reviratrol or Co-Q10 are, but I will look them up.

 

Best of luck to you my friend, and thank you.

Tom

gfpiv
Posts: 60
Joined: Apr 2010

Hi Tom, welcome to the board.  It sounds like you have a great positive attitude, and I think you have a decent chance of beating this.  My personal story, in a nutshell:  dx 3 yrs ago, 600+ CEA, 2/3 of liver tumors.  I got the hepatic pump (HAI), did a few complementary things (incl. exercise), and was blessed to have a great response to chemo (no resection), and have been off chemo and no tumor growth for a year now, CEA 1.

Bravo on the exercise (but don't overdo it); lots of evidence that it can improve quality of life and maybe even survival for cancer patients.  Also kudos on eating well (I cut way down on excess sugar and processed foods too).

The best and maybe least controversial supplement suggestion I can make for you is to look into taking OTC vitamin d3 - maybe 2k or 3k iu/day - very little downside, and lots of upside studies - just okay with onc first.  I do a few other things too, but won't barrage you here.  On the other hand, if I were on chemo, I would absolutely avoid supplemental Vit C (which is different from IV vit C) - have heard info (including from MSKCC oncs) that it can actually help protect the cancer cells from the chemo.  Also, please don't take offense to this, but the acid vs. alkaline thing is, IMHO, a huge bunch of malarkey...but I will spare you further pontification on that.

Anyway, best of luck to you.

-Chip

 

tomwade123's picture
tomwade123
Posts: 9
Joined: Apr 2013

Thanks for the great information and positive attitude.  I'm an oddball case when it comes to CEA levels.  Mine have always been low.  The onc says I fall into the small percentage of folks where CEA is not a good marker.  I keep positive and say "hey if it's a low number it's gotta be a good sign!"  :)

My next PET scan is in in 3 weeks so I hope to have some good news from that.  I'll keep my exercise up since it's always been a part of my lifestyle anyway.

So I didn't know that info about the vitamin c supplements.  I'll talk to my onc about that and lay off of it for now.  I certainly don't want to protect the cancer!  No offensive taken about the acid vs alkaline debate.  More information is good.  I welcome all comments, opinions, and suggestions.  My perspective was to be sure I'm eating as healthy as possible. So feel free to pontificate away!  :)

Thanks again, 

Tom

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 507
Joined: May 2012

I am Stage IV, diagnosed 1 year ago this month. I had chemoradiation, then surgery in June, removed rectal tumor, liver tumor, and gallbladder. I had six months of Folfox, finished in December. I also had 12/23 positive lymph nodes. So far clear scans. Best of luck to you. Sounds like you are on a good path.
Sandy :)

tomwade123's picture
tomwade123
Posts: 9
Joined: Apr 2013

So happy to hear your scans are clear!  I pray it remains that way for you!  Best of luck to you and thank you for your positive words of support.  They mean a lot and give me something to shoot for!

Best of luck

Tom

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Wish you didn't have join us, but now that you're here hopefully we can provide some support as you go along.  It's not an easy path to walk, but it helps to have companions on the journey.  Personally, I have metastatic disease (essentially stage 4 but with an unusual presentation and tumor type so I never got an official staging), with three recurrences.  After a couple of years of non-stop surgery (with the addition of cimetidine to the last one-if you do surgery again, worth checking out), I reached remission in Dec. 2011.  Last PET in March was still good, so I've had about 15 months of being "cancer-free" (quotation marks because, obviously, we can never be 100% certain).  So there is hope, especially if surgery is part of your treatment plan.  Good luck, and keep us posted on how you're doing!  Ann Alexandria

wolfen's picture
wolfen
Posts: 1318
Joined: Apr 2009

Just wanted to welcome you to the most wonderful group of folks in the world. I'm the mother to Johnnybegood, another Stage IV colon cancer survivor since 2008 and the wife of a H&N + lung cancer survivor. JBG has been bravely kicking cancer's a$$ for almost five years now. Hubby has just begun his journey.

There is a wealth of information, support and downright love here for you to lean on. Ask anything and one of these warriors will have an answer for you.

Best of luck as you beigin your journey.

Luv,

Wolfen

tomwade123's picture
tomwade123
Posts: 9
Joined: Apr 2013

I am finding that this is an amazing group, just as you say.  So happy to hear your son is doing well and remains a survivor.  My father was a lung cancer victim so you are in my prayers with your husband.  so much more is known today on how to fight this disease.

Thank you for taking the time to reach out to me.  It means so much and gives me added strength to carry on.

Tom

tomwade123's picture
tomwade123
Posts: 9
Joined: Apr 2013

I thank you for sharing your inspirational story!  So sorry you had to endure so many surgeries over a 4 year period.  I just pray that your health remains strong and you no longer have to go through that suffering again.  I do have hope, and with amazing people such as you sharing your stories of courage and strength, I have inspiration and belief that I too can beat this disease.  While I do want to continue to live, it is so much more important to me that I am able to be around for my children during the times they need me the most.  Thank you!

Tom

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

My wife recently exceeded the three year mark, using oral immunotherapies, a lot of CAM treatments based on scientific and clinical reports, and "metronomic" with a mild oral chemo for stage IV.  She's in good shape, without the usual side effects, and not chemo/cancer sick.  We're optimistic enough to start building a new house.  

Two years ago, most surgeons and oncologists had written her off, perceiving a fast spiral out.  Our history, click tanstaafl.  If you are interested in reading about effective CAM, used with mild chemo maintenance, you might explore some links in my old post.

mikew42
Posts: 114
Joined: Mar 2004

Tom,

I was diagnosed stage 4 having 9 of 25 nodes and three spots on the liver at age 41. That was in 2004. I also had a very low CEA right around 1.0 at time of diagnosis. After chemo and RFA I enjoyed about 7 years NED until late 2010 they discovered a recurrence in my liver. Had a liver resection, more chemo and now on year 2 of again being NED. Like you, I had young children (3 boys) at diagnosis who are now 19, 18 and 14. I don't post often, but do like to give hope and encouragement to those just starting their battle. Take care. 

Mike  

Maxiecat's picture
Maxiecat
Posts: 544
Joined: Jul 2012

Welcome to the group... You will find a lot of helpful members here.  I am 46 and I have a 10 year old and a 12 year old.  i am a stage 3b ... But aggressive signet ring cell adenocarcinoma ... Appendix cancer.  I had a rt hemicolectomy last June and went thru 12 treatments of Folfox last year.  I finished up my chemo in January.  I just had a CT scan this week...and so far it looks good.  My CT scan is going to be reviewed by another radiologist early next week...the onc wants him to compare this CT to one I had back in Dec of 2012.  I am also in the process of getting to an appendix cancer specialist ...just trying to decide between Md Anderson and the University of Maryland.  I am still in the process of getting my medical records together so that we can schedule the appointment...my oncologist's office is very slow in responding to phone calls.

Alex

jen2012
Posts: 1607
Joined: Aug 2012

Hi Tom - your story sounds similar to my husbands.   He was diagnosed stage four in August at 46 yrs old.  At the time our kids were 14, 12 and 11 months.   Now 15, 13 and 18 mos....and 47 :)    He hasn't had surgery yet - will be in a couple of weeks actually.  He did the chemo first - folfox plus Avastin.   Do they do Avastin with Folfiri? 

You'll find lots of great people and support here.  Any questions, just ask...chances are someone will know the answer!

Good luck in your treatment!

janderson1964
Posts: 2215
Joined: Oct 2011

Welcome to our community. I have been stage IV for 7 1/2 years and am  currently NED for the third time. I was diagnosed at 41 and am also very much into diet and exercise.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

 

Staged at 3c by radiologist in 2006, pending surgeon’s report. Surgeon found reason to stage at 4.

 

I did imported medical strength Chinese herbs instead of conventional western medicine treatment.

 

Don’t allow cancer to scare you. Do your homework, listen to self-survival instincts, choose your ammo wisely, and you’ll do OK.

 

Best hopes for you,

 

John

 

Annabelle41415's picture
Annabelle41415
Posts: 6016
Joined: Feb 2009

Welcome to the board.  It sounds like you have a very good attitude going into this rollercoaster of getting better.  Glad that you found us because we can provide some very helpful and supportive information.  Ask any questions that you wish, usually there will be someone that can help or give their insight.  Before you start treatment please let your doctor know exactly what supplements and/or prescriptions that you are on, even the slightest multi vitamin can contain things that either aren't good combo with treatment or lessen the treatment effectiveness.  I've found that through prayer and my faith it has given me strength.  You have found a good support system here though and we can help you with your journey.  Keep us posted.

Kim

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

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

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Thank you for bringing up survivors' stories. I think sometimes, even though I have read most everyone's survival story, I need that "reminder" that people do survive this. So it's nice that the survivors have posted again about when they were dxd and how long they have been NED or close to it. Welcome aboard (u r in the right place).

Judy

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

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

 

Semira's picture
Semira
Posts: 378
Joined: Mar 2012

on this big international Family. Sending greetings from Cologne, Germany.

My husband was diagnosed stage IV back in Nov 2011 (2 Mets to liver), he had surgery ato remove both and got a temporary ileostomy for 7 months. After 6 Months of Chemo (Oxi + Xeloda) and a clear scan the ileostomy was removed and he has been doing well ever since. We even were able to leave for a 5 week travel to India in January which we had to cancel in 2011 after our cancertrip began. His last check (bloodwork + ultrasound) in February was still clear and the next one will be in May. 

Happy you found this great community here. There is so much wisdom and all these kind people here are such a great help during these turbulent times.

A welcome hug from Germany

Petra

PhillieG's picture
PhillieG
Posts: 4884
Joined: May 2005

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

Chelsea71
Posts: 1170
Joined: Sep 2012

Beautiful pictures, Phil!

Chelsea

YoVita's picture
YoVita
Posts: 590
Joined: Mar 2010

Love the shirt. Good luck with your treatment.

YoVita's picture
YoVita
Posts: 590
Joined: Mar 2010

Sorry you're in this situation. Your youth and good physical shape will help you fight this battle. I'm a stage 4 metastasized crc and after a tough year of surgery and treatment anda lung nodule found two and a half years from initial diagnosis I'm doing very well 3 years out,. Good luck with your plan.

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

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's picture
dmj101
Posts: 527
Joined: Nov 2011

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.

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

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's picture
tomwade123
Posts: 9
Joined: Apr 2013

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

jen2012
Posts: 1607
Joined: Aug 2012

What a sweet little baby! So cute!

swimmer22
Posts: 60
Joined: Oct 2011

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.

 

Trubrit's picture
Trubrit
Posts: 4681
Joined: Jan 2013

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. 

Trubrit's picture
Trubrit
Posts: 4681
Joined: Jan 2013

but glad that you have found this message board. You will find the love and support you and your family need, plus a plethora of information of all kinds.

Be sure to have a notebook with all the questoins and concerns that you have, for your Oncologist. No question is silly or insignificant, write everything down and take it in with you to every appointment. This is one thing that has helped me so much, and my Oncologist (Gastroenterologist, Surgeon, Radiation Oncologist, GP) have a little laugh now and again at some of my questions, but I don't care. 

We are here for you. Good luck! 

 

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