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Stage 4 survivors

jen2012
Posts: 1186
Joined: Aug 2012

I know there have been many posts about survivors, but it's discouraging to look through old posts and then realize many have passed on. Was wondering if the stage 4 folks would mind posting? Things I'd love to know are:

1. How long since initial diagnosis?
2. What made you stage 4? My husband has only distant lymph node involvement and it's hard to find any info on those cases.
3. What has your treatment been - ongoing or have you been out of treatment for extended periods of time.
4. What is your quality of life - do you still work, enjoy everything as you always have.
5. Did you make any life changes - diet, supplements, etc.

Thanks very much for anyone that takes the time to share! Also if you know of anyone no longer on the boards that is still surviving, the more stories the better!

HANRSC
Posts: 21
Joined: Apr 2007

Hi

I love your viewpoint of hope but with Stage 4 or any cancer I learned recently to use and understand the word- NED. so I understand your oncologist.  I have know a fellow that went almost 15 years  on two different occassions with colorectal Stage 3; it came back, that individual has now had 10 of NED since...he still has to go every year for a checkup.  Some have had 20 years of NED and then one day...Note my reply above, I am almost a 7 year survivor. HOwever, I agree with your statement,  "I do think that I need places like this for support as it is hard to find people who truly understand where I am at and where I have been. I would like to help people going thru similar issues as I believe I can help and I think there is a need for this kind of support." Please don't take my comment as a negative reply but as a motivator to keep fighting the battle with God's help...as we know all healing comes from him.  Note this recent email.

 

Sent: Monday, August 20, 2012 9:04 AM
Subject: CHEMO DAY

Cancer is a strange cell.
You can go along for years inremission
and then oneday it pops its head up again.
If you ever have it you will never be free of it.
Pray for the day there will be a permanent cure.
Dear God,
I pray thatYou will guide someone to find a cure for cancer in 2013                                 .

Amen
AIGWT- Charles
 
HANRSC
Posts: 21
Joined: Apr 2007

Hi

I love your viewpoint of hope but with Stage 4 or any cancer I learned recently to use and understand the word- NED. so I understand your oncologist. I have know a fellow that went almost 15 years  on two different occassions with colorectal Stage 3; it came back, he has now had 10 of NED since...he still has to go every year for a checkup.  Some have had 20 years of NED and then one day...Note my reply above, I am almost a 7 year survivor. However, I agree with your statement,  "I do think that I need places like this for support as it is hard to find people who truly understand where I am at and where I have been. I would like to help people going thru similar issues as I believe I can help and I think there is a need for this kind of support." Please don't take my comment as a negative reply but as a motivator to keep fighting the battle with God's help...as we know all healing comes from him.  Note this recent email.

Sent: Monday, August 20, 2012 9:04 AM
Subject: CHEMO DAY

 Cancer is a strange cell. You can go along for years inremission and then oneday it pops its head up again. If you ever have it you will never be free of it. Pray for the day there will be a permanent cure.

Dear God,

I pray thatYou will guide someone to find a cure for cancer in 2013                           .

Amen

A SMALL REQUEST...All you are asked to do is keep this circulating.

Even if it's only to one more person.

In memory of anyone you know who  has been

struck down by cancer or is still living with it.

 
IGWT- Charles

 
 
 
 
Momof2plusteentwins
Posts: 437
Joined: May 2012

Stage 4 diagnosed 4/11/12 - rectal tumor,1 liver met. 5 weeks if chemoradiation, 4 weeks off, surgery 6 hours - removed rectal tumor, liver met, and gallbladder. Folfox started 4 weeks later, just finished round 8 of 12. Tired of chemo, all of the usual side effects, the cold sensitivity has gradually gotten worse. Have not been hospitalized any time during chemo or have not missed a dose. 4 more to go, should be finished by dec 17. I have not changed my diet too much. I was a big coke drinker before all this and now can't drink it every other week. I am not working now because I am a nurse on med/surg and can't be around sick people with my WBC so low. I have 4 children - 2 are married and have twin 15 year old boys that are in the high school band. I do go to every football game Friday night to watch them march. Every other week is usually good and feeling good. I have had 2 CT scans that have been clear and next one is in dec. Hope your husband is doing well.
Sandy :)

jen2012
Posts: 1186
Joined: Aug 2012

Hi Sandy - your child situation sounds similar to ours - oldest is 15, the youngest is 1!! But you look younger than us....I was 43 when I had the baby- yikes!
I'm glad you are doing well - I hope it continues. 4 more treatments - You can do it!

sammer4u
Posts: 23
Joined: Dec 2011

1. How long since initial diagnosis? Diagnosed November 4, 2011 had surgery to remove tumor.
2. What made you stage 4? My husband has only distant lymph node involvement and it's hard to find any info on those cases. Had tumors in the Liver.
3. What has your treatment been - ongoing or have you been out of treatment for extended periods of time. Had 12 treatments of chemo, folfox, oxiplatin, a couple of other mixtures.
4. What is your quality of life - do you still work, enjoy everything as you always have. Slowed me down during surgeries, but for the most part worked as much as I could.. office job helped.. was out for 2½ - 3 weeks with surgery recovery. Still try to do what I used to do with a few exceptions, weight restrictions, and other stuff. Miss hot tubing it and swimming, and bowling.. but eventually I will get back to it.
5. Did you make any life changes - diet, supplements, etc. No life changes, not diet changes, no supplements... continued on with normal diet when I could.

My life was on hold for about a year. I had first surgery when I went to the hospital in pain, and sick.. found out there was blockage in the colon, removed it.. and found out I had a colostomy. Life changed a bit, but never looked back, never felt bad, angry, just lived life to the best I could and always looked forward and positive. Felt the Oncologist and staff knew what to do and the best for me. Liver Specialist felt she got all the cancer/tumors out and I should be good to go! Just one last surgery to do the take down (colostomy reversal) in November and then it is life as usual, with a little less of the right side of my liver. I cannot wait for a hot tub, swimming, returning to my normal routine stuff! Been a hell of a year, but from what I have seen.. I am glad I am on this side of the dirt. Had a good friend die from Colon Cancer and was diagnosed a week before me. Saw a few die from cancer while I have been having my fun, but I think my positive attitude and dedicated girlfriend (now fiance) helped a ton!!!

jen2012
Posts: 1186
Joined: Aug 2012

Hi Sam - you do sound like you have a great attitude. I'm sorry about your friend. Congrats on the upcoming wedding and continue to stay well!

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Hi Jen,

I was dx'd in May 2010, my Stage IV is due to one met to the right lung and (at the time of dx) too many and too large of mets in the liver to count. I did the 6 weeks of radiation while getting chemo. My white blood cell count bottomed out in Sept. 2010 and put me in the hospital. Treatment started again after about a month, then the WBC got too low again in April 2011 and I went two months without treatment. When I started again in June, my CEA had soared to 2000 and blood work said that my liver was about a week to 10 days away from failure. I've been on chemo ever since only missing a week twice due to vacation in March and a hospital stay with pneumonia at the end of August, beginning of September.

I have to admit that many of the things I enjoy doing I've had to stop or pull back on to a large degree. I love cooking and Sunday was the first time I was able to do so since before going in the hospital in August. I've been on disability due to spinal damage since 1999, so I've filled my time wallpapering my office with academic diplomas. I had to end my Masters in History program one semester short because I had to move from Arizona to Utah. I'm currently pursuing a third Bachelors (this one in Philosophy) but had to put the current semester off due to my health. I intend to finish that one in December of next year and then say farewell to the Ivory Halls of Academia. I'm just getting too tired to maintain classes and I have my own writing that I want to finish and try to get published (I am planning on publishing my first novel as an eBook on Amazon.com by the end of this year.)

Finally, I have had to make some adjustments to my diet according to the blood draws every two weeks. And I'm on blood thinners right now because of blood clots in my lungs, so I've had to curtail foods with Potassium while trying to consume more with Magnesium because that level is dangerously low.

Ray/Doc

jen2012
Posts: 1186
Joined: Aug 2012

I know you haven't had an easy time Ray, but I hope things turn around for you. You are a fighter!

I can't wait to hear that your book is published - saving a space on my kindle for it, so please let us know!

biglaur's picture
biglaur
Posts: 66
Joined: Apr 2010

I thought I had appendicitis...but after an emergency colonoscopy and ct scan...learned I had colon cancer with mets to liver and lung. First I had a colon resection...then I did 11 rounds of folfiri with Avastin plus a clinical trial drug. I took a 3 week break between rounds 5 and 6 (for my daughters wedding) and for stereotactic radiation. After the initial colon resection I was reluctant to have further surgery so opted for radiation to nuke my mets...worked great! I finished chemo, then did Xeloda for 6 months. I have been NED since Feb '09...30 ct scans and 6 PET scans later I think radiation poisoning will be my biggest worry now :) My quality of life hasn't diminished at all...we just got back from 2 weeks of bicycling in Italy, I have a 10 month old grandson who is the coolest thing ever...I'm about to have a one woman show of my watercolors in Hawaii and I'm super happy to be alive and kicking. Stay positive and keep a sense of humor...

jen2012
Posts: 1186
Joined: Aug 2012

Awesome story Laur and beautiful grandbaby! Enjoy him and your good health! Thanks for sharing your story.

janderson1964
Posts: 1526
Joined: Oct 2011

Great story. Thanks for sharing.

PatchAdams
Posts: 272
Joined: Nov 2011

Your onc said you have a 20% chance of living 2-5 years? MD Anderson disagrees when liver mets are surgically removed.

Solitary Colorectal Liver Metastasis Resection Determines Outcome FREE
Thomas A. Aloia, MD; Jean-Nicolas Vauthey, MD; Evelyne M. Loyer, MD; Dario Ribero, MD; Timothy M. Pawlik, MD, MPH; Steven H. Wei, MS, PA-C; Steven A. Curley, MD; Daria Zorzi, MD; Eddie K. Abdalla, MD

Researchers at M.D. Anderson Cancer Center at the University of Texas prospectively studied patients with a first solitary liver metastasis who were treated either with hepatic resection or radiofrequency ablation. ….

The present study shows an 80% 3-year survival rate (and a 71% 5-year survival rate) after HR and well-established data showing 10- and 20-year survivors after HR of solitary and multiple metastases, even without adjuvant chemotherapy.

http://archsurg.ama-assn.org/cgi/content/abstract/141/5/460

Nana b's picture
Nana b
Posts: 2744
Joined: May 2009

1. How long since initial diagnosis?

4 years come November, DT November 2008

2. What made you stage 4? Liver Mets

3. What has your treatment been - ongoing or have you been out of treatment for extended periods of time.

Folfox - every other week for 6 months

4. What is your quality of life - do you still work, enjoy everything as you always have.

My body aches more, and I have had 3 hernias so that has slowed me down some.

5. Did you make any life changes - diet, supplements, etc.

Yes, I try and eat all that will help my immune system, D3, Calcium, Tumeric, milk thistle, green tea, berries, greens, a couple other things that aren't in front of me right now.

I had pain in my stomach, felt like big time cramping one weekend when I was at the beach, I came home in pain went to a local doctor, as I had just moved here. She told me it was gas and IBS for 2 months, to go home and do sit ups. I finally demanded a colonoscoy and had to to through extreme measures to get it. Tumor in ascending colon, 7 out of like 14 lymph nodes affected, stage 3, then later Stage 4 with liver mets. Had a liver resection, 60%. I have been NED since, but last January my CEA stated going up. We did a mild Xeloda which I still have 1.5 months to go, but CEA should be at normal range. It had dropped drastically to 8 the last time I got checked. THere wasn't an evidence of cancer on my CT, PET or Colonoscopy, but we figured better be safe then sorry. Not sure if that CEA climb makes me start my 5 year again but,I'm not worrying about it.

My motto is, fight, fight, I haven't been afraid since day one. Maybe shock, but I have just been dealing with it, staying out of stressful situations, and moving on....

jen2012
Posts: 1186
Joined: Aug 2012

Hi nana b...thanks for sharing. I hope the xeloda works well!

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

Greetings

thank you for leading this post. I really needed to read everyone's story.

I'm coming up on my one year since dx'd. (November 26, 2011)
I felt like crap for a long time, and when dx'd I was anemic and they found colon cancer in the transverse colon, which we now know what caused by my radiation treatments for my non-hodgkins lymphoma battle from 1989.

the large tumor was in the transverse colon, only 4mm from the Liver.
the tumor "started" on the outside of the colon, and grew inward and spread to the liver.
so my 'stage IV' might be a bit different than others.

I've had the bag, the port and had 26 treatments of Folfox6 and Erbitux.
had surgery to remove the bag, and they cut out the colon tumor and about 10" of the colon

the liesons in my liver went from 30+ leisons a year ago... and as of July I had only six.!

In September I restarted chemo treatments (after healing from the surgery for 8 weeks) and now I'm on Xeloda and Avastin. And, they are calling this "maintenance chemo".

I have six weeks of treatments under my belt and begin week 7 tomorrow morning.

Quality of life...
honestly, I feel better today than I have felt in over 5 years.
its strange. really strange. But i feel like this is WORKING!

I was eating really healthy for the three months of the summer... but now on Xeloda and my nausea feels like hunger pains and I crave starching foods. (bread, rice, potatoes, veggies) but not much appetite for fruits right now.

I'm back working full time (I had taken over 5 months off work).

I have a problem avoiding the stress... but working hard to make sure I don't get dragged too deep into the stress of work and life.

I've been very frustrated with my faith, and I plan to work on that this fall and winter.
It's hard not to question God on his plan, and the "why me? Pitty party" seems to raise its head to me way too often.

thanks again... and i wish the best for everyone here.

joe

jen2012
Posts: 1186
Joined: Aug 2012

Hey Joe...great new picture...you look ready to get back to work! They say my husbands may have also been from previous radiation. Wouldn't it have been nice if someone suggested you guys had an earlier colonoscopy because it was possible for this to happen?

Ive been having a hard time with faith too. My husbands faith has always been stronger than mine but we have both been so involved in church..volunteering many many hours and its hard to not look around at the pain so many suffer and not wonder why. Especially children...I wish I had the answers. I hope you find them and find comfort in your faith and also continue to do and feel well.

traci43's picture
traci43
Posts: 418
Joined: Jul 2007

Interesting that 2 people mention radiation as cause of their tumors. I had over 20 IVPs as a teen, each IVP is 6-8 x-rays of the kidneys with dye. My original tumor was a the junction of the transverse and decending near the left kidney--the one they were x-raying. No one will say whehter that lead to this or not. It's been 30 years since I've had one, so maybe not.

Chelsea71
Posts: 1168
Joined: Sep 2012

You look great, Joe. Congratulations on your return to work. I admire the way you're not letting this disease take over your life. It's great that your body responds so well to the chemo. My husband, Steve, was pleased to hear about your liver met reduction. He just started chemo (again) two weeks ago as liver lesions developed. Good luck at work. Don't let the stress get to you. Thanks for sharing your story.

Chelsea

jen2012
Posts: 1186
Joined: Aug 2012

Have you tried grains...farrow quinoa etc....or maybe mashed cauliflower instead of the rice and potatoes. I made some pretty good quinoa and oatmeal cookies with very little sweetener that everyone here liked...can add fruits to those.

Chelsea71
Posts: 1168
Joined: Sep 2012

Jen

Those cookies sound good. When you say "sweetener" do you mean artificial sweeteners such as Splenda and Truvia etc.? This is something that confuses me. I believe that sugar does feed cancer. To me it makes sense to avoid it when possible. I have been "giving" Steve sweetener in place of sugar. Ex. Buying jam sweetened with Splenda, I baked muffins with Splenda, he uses Truvia to sweeten his tea etc. However, in the back of my mind I'm wondering if sweeteners too are harmful. I know aspartame is not the best choice, so I do avoid it. Should any type of sweetness be avoided? Just wondering what your thoughts are on this. You mentioned "very little sweetener," which made me think that you've done some research on the subject too. Last night he had ice cream sweetened with Splenda. Do you think this is a bad idea? It's so hard to figure out what's best with regard to diet, supplements etc. I find there's a lot of conflicting info. out there.

Thanks

Chelsea

jen2012
Posts: 1186
Joined: Aug 2012

Hi Chelsea - we have always avoided artificial sweeteners. I used 1/4 real maple syrup - the base was 3 cups of cooked quinoa and 3 cups of oatmeal. I would have used honey, but didn't have any in the house. I also juiced some apples and used the pulp and the juice.

Will post the recipe later if you are interested.

Chelsea71
Posts: 1168
Joined: Sep 2012

Yeah, that would be great. Thank you.

Chelsea

jen2012
Posts: 1186
Joined: Aug 2012

Chelsea....there is a lot of conficting info about sweeteners. They say stevia is natural but I haven't used it or researched it. The dietician did say she uses splenda and feels its safe. We aren't obsessive about avoiding sugar but try to not overdue it.

These cookies are probably closer to breakfast bars than cookies and I don't really have a recipe...just throw in random stuff. I make some for the baby without nuts...put some chocolate chips in the ones for the older kids. Seems you cant mess them up. I use 3 cups of cooked quinoa and 3 cups of uncooked oatmeal. 1/4 cup of maple syrup or honey or I'm sure agave syrup or brown sugar will work. Tablespoon of vanilla and couple tablespoons of butter or peanut butter. Mix it all together and add whatever you want ...chopped nuts...chopped dried fruit...unsweetened coconut...chocolate or carob chips....couple mashed bananas....apple or pear juice and pulp. Form into small balls and bake at 350 for 15 to 20 mins. I threw all in - coconut, fruit and nuts.

Not the best recipe to follow but you really cant mess them up.

Bluejuniata's picture
Bluejuniata
Posts: 20
Joined: Nov 2012

Hello there-- i believe that it does not matter what the sweetner is because any sweetner spikes your insulin levels. Anyone else?

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

one of the guys at my work, provided me with hash-cookies to make it through the early and more aggressive folfox treatments. man those were good!

but for some reason I craved cheeto's and freetoes, wanted to paint with water colors, sit in a bean bag chair with sun glasses and bell bottoms on... and I kept pressing that button on the stero trying to get it to change from Track 5 to track 7 of the Jethro Tull 8track.

not sure what happened there.

jen2012
Posts: 1186
Joined: Aug 2012

Those cookies sound even better. Will have to find the recipe...maybe I'll share with my hubby :)

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

Lots of great info here that gives me hope. Glad I found this site right after dx.

1. How long since initial diagnosis?

Right at 9 months (2/2/2012). About 10 seconds in to being told how bad it was (we knew it was cancer after the colonoscopy), the original onc said I'd be on chemo for the rest of my life, and that it would be terminal. After he said "chemo for life" my first thought was "I've got to do this for 30 years?" (I'm 57)' but I quickly found out he meant maybe 3 years but my worries about 30 years was unfounded...damnit. Anyway, the news hit my wife and I like a ton of bricks -- as you all know too well. I was at my local cancer center and told them I'd like a second opinion, which he was fine with that. Got into see an onc at a university hospital an hour away, that became an NCI center a few months later, which is nice. The 2 oncs are playing nice with each other. I'm being treated here in town, but the NCI onc is calling the shots, and that's where I'll have surgery if its deemed appropriate. Before I got involved in this crap I figured tx's were probably somewhat standard, but as you know, it's anything but. The 2 oncs have had different ideas at about every turn. Glad I went to the NCI center because the chemo is working well. CEA started at 44 and dropped steadily to right around 1. Last scan showed liver mets were kind of burned out (still there -- but minimized). I definitely believe I'll beat the 29 months that is the supposed average, and have been buoyed by the stories I read from you fine folks.

2. What made you stage 4?

Extensive mets to liver, which have been considered inoperable....but my oncologist has me seeing a liver surgeon In 2 weeks to discuss the good, bad, and the ugly. She's not sure it's the right thing at this time, but the surgeon is part of the tumor board that reviewed my case and he wants to talk to me. Apprently they would take one lobe and "burn out" lesions on the other side. Not sure -- would that be RFA?

3. What has your treatment been - ongoing or have you been out of treatment for extended periods of time.

I've been on folfiri/vectibix for 18 tx's, and I'm definitely feeling the effects. After a few tx's I felt "heck, I can do this." But the chemo has had a cumulative effect that's kicking my butt.

4. What is your quality of life - do you still work, enjoy everything as you always have.

I worked extensively the first several months -- many times 60+ hours a week. I'm a realtor and that's the way it goes if you're busy and successful, so no complaints. But business fell off a couple of months ago and I applied for disability, which was approved almost immediately. Can still earn $1000 a month on top of that, so I'm still working, but minimally. That along with the cancer insurance that I fortuitously purchased a few years ago, should help us survive, along with my wife's job. We have no cancer history in my family and I guess I thought cancer insurance would "insure" I wouldn't get this dread disease. Lol. Quality of life hasn't been bad, other than getting way too acquainted with toilets, and chemo brain and nausea. I've taken 3 chemo breaks for short trips to Texas, Colorado, and a week long Caribbean cruise. The further I get from chemo the better I feel, then start another round, and start over.

5. Did you make any life changes - diet, supplements, etc.

Not really-- no real nutrition advice from either onc. I was told they wanted me to gain weight, and I've been successful! I had lost about 15 lbs and I've put that back on.

The real joy in my life has been my 3 month grandson...see avatar. We have one daughter who was married a year ago and found out she was pregnant about the time I was dx. The little guy has sure helped bring joy to the family! The same as everybody walking the planet, I don't know how much time I have. But this disease has helped me focus on the important things and enjoy life to its fullest. In that way this has been a real gift. I love and appreciate you all, Dan.

jen2012
Posts: 1186
Joined: Aug 2012

Awesome Dan...glad that the chemo seems to be working!

Beautiful grandson you have! Babies are amazing! We had a surprise addition to our family 13 months ago....hes the best surprise ever. Its hard not to smile and laugh with the little ones around.

Good luck with the surgeon!

traci43's picture
traci43
Posts: 418
Joined: Jul 2007

Hi there - I was diagnosed 5 years ago with stage IV mets to ovaries and omentum. Since original surgery 6/07 followed by 12 rounds FOLFOX, I've had two recurrances. First in 2009, had HIPEC to remove three small tumors that were in a bit of omentum not removed in the first surgery and probably not new tumors. In December 2010 I had a recurrance with a tumor in the peritoneal fat near my rectum, 18 rounds of XELIRI knocked it back but didn't kill the sucker. In June 2012 my CEA jumped and I started XELIRI again (6 rounds). Just had surgery to remove what my surgeon says is an old tumor, so we think my body is fighting 6 months off after my first to recover and do chemo. Three months off after HIPEC to recover. Since then I switched to XELIRI because there are fewer side effects for me and I can keep working except for infusion days. I try to do as much as possible and only relax on infusion and post infusion days. In fact I delayed starting chemo this year to take my niece and nephew to Disneyland. My quality of life is pretty high and I try to keep it that way. We are fixing up our old house, weeding on weekends and going to shows and museums. I want to do more travel, but have to fit that in around work. ;-)

I have tried to reduce sugar in my diet, I've stopped sodas and try to eat healthier--organic as much as possible. I'm taking high quality supplements for inflammation as well as Oncomar. I have also been exercising and that really helps to get through chemo--way more energy and fewer side effects. In fact I really need to get back to exercising. Oh and I started meditating a year ago. It's really helped my sleep!

MadeInMichigan
Posts: 35
Joined: Nov 2012

Thank you for all of the posts, everybody... it gives me a bit more hope for my mom, who was recently told she had cancer for the third time.

It doesn't look good, but these posts help. I appreciate every moment now. I used to give her a hard time, and had I lost her from something sudden? I'd've never forgiven myself.

Thanks again for sharing. I'll be coming to this site and thread every now and then.

LullabyEye
Posts: 2
Joined: Dec 2012

I logged onto this site because I needed to know more about my daughter's condition. She also has Stage IV, does chemo every three weeks indefinitely at age 43. Her doctor told her in September 2011 that the average life expectancy was 2 years for her condition. I wanted to know how this compares to other people's experiences. I have to say I feel a bit encouraged by the longevity described in these posts, as well as the optimism. I feel like I'm in the middle of being a cheerleader and a pallbearer, and I need some balance between the two. A little perspective.

Thanks for bringing up the topic.

cinreag
Posts: 154
Joined: Oct 2012

Keep reading the posts on this site. There is a lot of help and encouragement here for you and your daughter.
Best of luck.....Cindy

Chelsea71
Posts: 1168
Joined: Sep 2012

Two years is what they tell everybody. Each situation is unique. There's so many here who have well exceeded their expiry dates and are living with very good quality of life. Welcome to the board. I'm sure you will find it helpful.

Chelsea

jen2012
Posts: 1186
Joined: Aug 2012

Thought i'd bump this up for the new folks to read.

annalexandria's picture
annalexandria
Posts: 2181
Joined: Oct 2011

with tumors in the colon, small intestine, peritoneum, and 5 lymph nodes (including one para-aortic).  Two surgeries, followed by FOLFOX with Avastin.  Had major recurrence in September 2010, with further spread in the small intestines and peritoneum.  Another big surgery, followed by more chemo.  Two single tumors popped up in April 2011, and again in December 2011, leading to the removal of another piece of colon, a chunk of rectum, and a total hysterectomy.  No more chemo for me, after two failed attempts.  I've been NED since Dec. of last year, so celebrated one year of no treatment/surgery last month.  I have a very aggressive form of CRC, so making it a year is a pretty big achievement...knock on wood.  AA

jen2012
Posts: 1186
Joined: Aug 2012

Thats great Ann...i hope that Ned continues!

YoVita's picture
YoVita
Posts: 540
Joined: Mar 2010

Originally diagnosed as Stage IIIC rectal cancer February 2010.  Lung recurrence after 2 1/2 years June 2012.  In remission/NED since.  I'm doing well.  Life changes - I exercise more.  My diet has always been fairly healthy.  My major life change is in attitude - enjoying life each day!  Thanks for bumping this post Jen.  It should be permanently at the top! 

ron50's picture
ron50
Posts: 1266
Joined: Nov 2001

On a current post 'Ron are you ok?' I had a call fro a long time friend of mine from Newzealand. Foxy(virginia) had stage 4 colon ca with liver met. She had surgery including a wedge resection of her liver and a year of chemo(5fu and levamisole). Next december she will be 20 years ca free...ron.

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Thank you for posting this. We need to hear these stories, believe that it can happen. The wife of a doctor I used to work with (he's now retired) had colon cancer about 15 years ago, stage IV. I don't remember the details except that I thought it would have a bad outcome and that it seemed they were chasing the cancer all over her body. She has been cancer free ever since then and is also retired now and doing wonderfully health-wise!

Sandy

 

jen2012
Posts: 1186
Joined: Aug 2012

I hope you continue to do well also yo vita! Must have been scary to have the reoccurence but im glad they took care of it!

Thanks Ron and sandy for those great long term stories!

wahine56's picture
wahine56
Posts: 3
Joined: Jan 2013

This has been a great thread to read. Encouraging. So wish I had found this last year.  Was diagnosed Sep2011 after a complete hysterectomy for fibroids. Was told I had LMS and stage IV, mets to liver, lungs, back.  First Dr. said I had a few months, nothing could be done.  My husband had a complete breakdown and committed suicide Jun2012, not being able to deal with life without me.  The pisser is I'm still fairly healthy; tired mostly.  I've had radiation on my back, chemo, and am now on Votrient.  Still not being given much encouragement; am told survival is less than a year.  So good to see stories of those who have done well.  Have just moved and starting with Seattle Cancer Alliance.  Hoping for positive results.  Thanks all for your postings.

emrose's picture
emrose
Posts: 137
Joined: Dec 2008

1. diagnosed December 9, 2008 at 34 yrs old - stage 3 (but there was a tiny spot near the lung/esophogus that they determined was just acid reflux). In February 2010 a scan showed that acid reflux was bigger and brighter and it turns out it was a met in the lung, making him stage 4. This was disheartening since he had just sufferred through 6mo chemo (while I was pregnant!) 

2. 3 small mets in the right lung 

3. Colon surgery, 6mo chemo, lung surgery, supplements/diet changes

4. He's doing very well! The chemo did cause him to get avascular necrosi in both hips, so he will need them replaced :( our son is amazing - he's 3 yrs old and wouldn't be here if my husband didn't get cancer (we quickly decided to try and get pregnant before he started chemo). His last scan was in June last year and was crystal clear - over 2 years since his lung surgery. Praying for another clear scan this year

5. Yes yes yes. The chemo didn't work for my husband (though I know it does for many). We found an herbalist, nutritionist, and naturopath. His herbalist specializes in cancer treatment. He cut most sugar from his diet, began juicing and started a ton of supplements. 6mo of chemo made him miserable and the cancer grew the whole time. The supplements make him feel better, give him more energy, and so far no reccurance. Yes, his onc recommended chemo after the lung surgery but also agreed that it may not be effective for him and supported his deciscions to opt out. 

 

Hope this was helpful. Best of luck to you! 

 

Laura

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I was first dx with colorectal cancer in march of 2008,I did xeloda,then surgery.The tumor had spread to my tailbone,after surgery I ended up with a colonoscopy.No follow up chemo.Then in november 20011, I was dx with a cancer recurrance to my liver,a golf ball sized tumor was found then,and then I did 5fu coctail with avastin.Surgery was in july 2012,no follow up chemo,and I have been ned eversince.I did have to make diatery changes,but because I became diabetic.I can do what I did before,except I now have a broken leg,fell down,but I am going to retire probably next month.So far I have been NED twice.Good luck.

impactzone's picture
impactzone
Posts: 429
Joined: Aug 2006

almost 6.5 years here. I was dx with liver, colon and lung tumors. I had 4 lung surgeries, colon and liver and folfox. All were done at Stanford.

I get scans about every 3 - 4 months. I just got one thursday and this makes the first time I have gone 1 year without a met showing up, usually in lung. I have had 4 thoracic surgeries and still surf and ski. I teach high school and coach and still do that. Greeat times with kids and wife and I am 53 years old.

Life changes have been to be more alive. I never miss a chance to do something. I try to eat healthy, take an aspirin a day, exercise read a lot and mentally have gone through some antidepressants but now take nothing. It is tough but I get angry about this and then try to find sosmething I like and can laugh. My wife has been great and helps me so I can help her, which really helps me.

Live life, fight and never ever, ever give up.

Chip

taraHK
Posts: 1961
Joined: Aug 2003

1. How long since initial diagnosis? - 10 years
2. What made you stage 4? Initially diagnosed Stage 3. Since then I've had mets in lung, bone, brain, breast (!)
3. What has your treatment been - ongoing or have you been out of treatment for extended periods of time -- in and out of treatment although have to say my longest period NED was 2 years. I've sometimes had chemo breaks. 
4. What is your quality of life - do you still work, enjoy everything as you always have - I consider my quality of life to be good. Until recently, I have been working full-time, exercising, travelling, good social life. I'm about to go on sick leave from work and exercising not much these days (discomfort from bone mets) but still active....
5. Did you make any life changes - not much. I was a pretty health eater pre-diagnosis (lots of fruits and veggies, low-fat, no junk). I take a lot of vitamins

I consider myself lucky to have had these 10 years, especially since my sons were 10 and 12 when I was diagnosed and they are now handsome young men of 20 and 22. 

Tara

BusterBrown's picture
BusterBrown
Posts: 221
Joined: Mar 2005

 

Hey Jen,

For me it started Dec. 2004, DX w/ CRC and Liver Mets, I was 42 years old when dx.  Today, i'm 51 years old and I'm cancer free. My next appointment with my oncologist is July 2013:)  It's been a long road, I've been through the ringer, however, I never once thought that I could not beat this disease. My best advice is to compartmentalize your disease, visit it when you have to, but do your best to live your life.  

Buster...

 

 

jen2012
Posts: 1186
Joined: Aug 2012

Thank you all for sharing your stories.   I read them often when I'm feeling anxious....fully understanding there are no guaranties, but there is hope!

Bumping this for all the new folks that have recently joined.

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