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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!

smokeyjoe
Posts: 1428
Joined: Feb 2011

I'm stage 1V, diagnosed Dec. 2010...mets to ovaries, spleen, etc. lymph nodes. I did chemo. Folfiri for 10 months...10 month chemo. break, some progression showing again (ugggh) ...tried three months of xeloda, but wasn't effective enough, so I just restarted Folfiri, waiting for Avastin to be approved for me. I had two blood clots in my lungs which is why I went to hospital in the first place. Life is as it was before, work, kids games etc......I get slight side effects, some fatigue, sometimes tummy upset...but not anything that stops me from activities. A month ago I walked the 3 mile climb up Watkins Glen Gorge (gorgeous for anyone who enjoys a fall hike, do it, it's amazing, Finger Lakes area of New York, oh and the wineries too!!!)

jen2012
Posts: 1186
Joined: Aug 2012

Hi Smokeyjoe - wow that ovaries met really threw me ... I thought you were a man! :)

Thanks for sharing your story - sounds like an awesome hike you took Will have to find out how far a drive that is for us.
I hope you do well with your new treatment - good luck!

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

Dx'd April, 2007 when metastatic tumor was found encompassing my ovary. Tumor showed to be appendiceal in origin, thus they then removed my healthy looking, tumor filled appendix. Therefore, state IV at dx. Had significant mets and seeding throughout the peritoneum - on the omentum, and on the outside of my colon and ileum.

Debulking surgeries followed by intraperitoneal (IP) chemo followed by systemic chemo. Treatment completed in April, 2008.

Been NED/remission since. Longterm prognosis looks excellent.

Full, normal life; doing anything and everything.

I can't say I've made many lifestyle changes, tho I've tried to eat healthier and get more exercise.

jen2012
Posts: 1186
Joined: Aug 2012

Wow - good for you! Thanks for sharing and I hope your remission continues for many years!

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

Without the experts at Sloan Kettering who knew how to treat my rare form of cancer, I would not be alive.

Alice

Chelsea71
Posts: 1168
Joined: Sep 2012

Hi Jen,

I find those old posts upsetting too. I was really thrown off about Bruins1971. Sad for him and his family but also reminded of what might lie ahead my husband and I.

Has Mark had surgery? Is the primary tumor gone? Was the tumor in his colon or rectum? Steve had several distant lymph nodes involved. They were removed during hipec. I'm wondering if Mark would be a candidate for hipec. Regardless, he has a lot going for him. He is young and strong and is tolerating treatment well. No organs are involved. He doesn't have other health issues. I would think you guys could be successful in managing it as a chronic disease for many years. (Until they find a cure!).

Steve has not worked since diagnosis. But he feels well enough that he could. His onc told him that people with "your kind of cancer" don't work. She said they need to save their strength for managing the disease. He seems to have a really good quality of life. He doesn't think much about cancer. He has many hobbies and walks and lifts weights. Even while on chemo he can continue on normaly. Finds himself tired on the day following disconnection. In many ways his quality of life is better now that he has an ileostomy. The ulcerative colitis had him running to the bathroom constantly. Now, it's no longer an issue.

As far as diet, he cut out sugar and reduced red meat. He takes MCP. Started only a month ago. I asked his onc if he should stop before chemo and she said to continue taking it!!!!!! She is full of surprises.

Steve and I have only been at this slightly longer than you guys, so we consider ourselves novices. However, from what I've learned, I think you and Mark should be quite hopeful for many good years ahead.

Good question. I too am looking forwar to many positive responses.

Chelsea

jen2012
Posts: 1186
Joined: Aug 2012

I know it's heartbreaking, when I realized some of these young vibrant people passed away I felt so sad - like I knew them.

He has not yet had surgery. They want to do the chemo for a few months - hopefully surgery in January or February. It is rectal. He has been tolerating chemo very well and he seems so healthy that it's almost hard to believe.

I'm still waiting to hear back from the doctor about MCP and some other vitamins.

I hope Steve did well with him chemo this week.

Randy33
Posts: 48
Joined: Jan 2011

I was dx with stage 4 colon cancer in July 2008. I had mets to the liver and lymph node in the neck. I had 10 rounds of Folfox w/ Avastin until the neurothopy got too bad and I had to quit. I still have numbness in my feet. After my last round of chemo my PET scan showed I was cancer free. That was in Dec. 2008. My doctor told me I had a 95% chance of recurrance, but I decided to do everything I could to prevent recurrance. My program is as follows:
1. Exercise 3 hrs per day doing walking, yoga, weightlifting and running.
2, Eat a Mediterranian diet. No red meat, limit sugar, sat. fat, white flour. Also eat lots of fruit, veggies, and whole grains. Green tea and tumeric every day.
3. Take a variety of supplements: asprin, resveratrol, grape seed extract, fish oil, multi-vitamin, Co-Q-10, and Vit. D3.
4. Avoid stress
5. Prayer
6. Visulize my anti-bodies attacking cancer cells.
So far the program has been working. My next scan is in Jan. My last doctor's visit was last week and my CEA number indicated I was still NED. So far things are working out well. My doctor says I'm 62 going on 45. Except for the numbness in my feet I am in great shape. One positive thing about the whole experience has been a greater apprecdiation for life. I hope this helps.

Randy

jen2012
Posts: 1186
Joined: Aug 2012

Just the kind of stories I wanted to see - thanks so much for sharing! 3 hours of exercise a day? Yikes! I'm glad you are doing so well!

mstults
Posts: 1
Joined: Oct 2012

That reinforces my hope. I was diagnosed in June this year with colon cancer and mets to liver. Had colon resection and surgeon said liver is eaten up. Started folfox in July. After 6 treatments the ct showed all tumors are shrinking. The largest was 9 cm to start and was 6 cm at the ct after 6 treatments. The Cancer Protein marker went from 303 at the beginning to 9.7 after 6 treatments. Dr. said I was tolerating so well that he added Avastin with the 7th treatment. That was last week. It increased the fatigue but if it helps I can tolerate it. Other then the fatigue the neuropathy is the worst side effect for me. But I can tolerate that too to live. Dr. says we have a good start in the fight.

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

Randy

I like... I mean, I LOVE your simple six steps.

I am approaching my year anniversary of joining this colon cancer club... and I and making my goals for how/what I am going to do in this new year.

I plan to be a copy cat of your list.

thank you!

JoeMetz

Randy33
Posts: 48
Joined: Jan 2011

Joe,

My plan is not the easiest to follow, especially all the exercise and the diet. It helps that I am retired. I tell my wife and friends that my new job is fighting cancer. I really feel good now both physically and mentally. I really feel I am going to make it. When I first got my diagnosis I thought for sure I only had a couple of years at most to live. Now I have got confidence I will survive although I still get anxious waiting for scan and CEA results. Good luck on your fight and I will be following your progress.

Randy

krishna12345
Posts: 3
Joined: Oct 2012

Hi Randy

My father was dx with stage 4 colon cancer in September 2012. He had mets to the liver (9mm tumor) and spleen (15mm tumor).Docs have advised chemo. Is chemo enough?

Please describe the tratment given to you.

Randy33
Posts: 48
Joined: Jan 2011

I had 10 rounds of Folfox and Avastin until the neuropathy got too bad to continue. My Onc wanted me to originally do 12 rounds. After chemo I was suppose to have surgery and radiation to remove what was left of the tumors however the PET scan showed that the tumors had disapeared. We decided to wait and see what happened. I started out having scans every 6 months and now I am on yearly scans. I also have my CEA checked quarterly. So far so good. One thing I did was exercise and eat well during chemo. I don't know if that was a factor or not. Good luck to your father.

Phil64's picture
Phil64
Posts: 417
Joined: Apr 2012

Oct 31, 2011: Diagnosed with testicular cancer, surgery followed on 11/1, Radiation treatments over Nov and Dec in 2011.

Apr 21, 2012: Colonoscopy completed, found colon cancer. Was experiencing symptoms that lead to colonoscopy. Surgery followed. MET in Lung found. Surgery followed. Officially Stage IV colon cancer.

June through Current: Undergoing FolFox chemo treatments. Currently in treatment 9 of 12 (disconnect will be on Sat 10/20.

One year since testicular cancer diagnosis.
Six months since Stage IV colon cancer diagnosis.

I had one lymph node involvment, but later Lung MET was found which made it Stage IV.

I'm working throught the chemo. I am losing about 1-1/2 days of work every months because of chemo. So far work has been understanding and supportive.

Quality of life is good. Seems like chemo weekends are mostly sleep and some working from home. Other than chemo weekends I've been able to do most activities with help from friends and children.

I've been trying to eat healthier; however the nutritionist didn't want me to lose weight during chemo so she has advised a higher calorie diet during chemo.

Currently there was a small nodule on my lung. A follow-up scan is scheduled for 11/12. If the nodule grows that could mean another MET and it could mean that the FolFox is not working. Or the met may prove to be inflamation or congestion.

so far, we all seem to be newbies... Where are the longer term stage IV survivors? I'm guessing that once NED most people forget about this discussion board???? Does anyone in NED status visit the board?

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Did you forget me, Phil?

8.4 years and still counting...

So, to answer your question..."Does anyone in NED status visit the board?"

Answer: I do more than just visit - I actually live here:)

-Craig

Phil64's picture
Phil64
Posts: 417
Joined: Apr 2012

However, I'm wondering if there are lots more experiencing NED that we are not hearing from??? I hope we see a lot of responses to this thread. :-)

jen2012
Posts: 1186
Joined: Aug 2012

Phil - I hope the nodule is nothing. My husband too had stage 1 testicular - 13 yrs ago. Some docs think this tumor may have been from that radiation. Who knows. He also is working through chemo. Takes the day off for the treatment - since so far it's been an all day thing! So aggravating that there is so much sitting around and waiting before they get started!

Good luck with your scan, I will pray for good results!

Craig - I love your stories and the others like you that continue to share after all this time! True inspirations!!

swimmer22
Posts: 53
Joined: Oct 2011

At 46 years old, I was diagnosed Stage IV out of the gate on 12/16/10 so I am approaching the 2 year anniversary. I had rectal cancer with spread to the lung (two small nodules). They attacked my lung mets first with surgery via VATS, followed by 6 Folflox/Avastin treatments. The Folflox also reduced the size of my rectal tumor by 50%.

Next, I progressed to 28 daily treatments of chemo/radiation, then waited 6 weeks and scanned. Results showed a complete response to the rectal tumor. I followed up with surgery at 10 weeks post chemo/radiation to remove the scar tissue from where the tumor was located. Clear pathology on all lymph nodes harvested as well as the scar tissue removed.

I then went through 12 Folfiri treatments (preventative mop-up) that ended this past April 2012. I've had nothing more since. So far I am very fortunate as there have been no signs of disease since my PET scan after chemo/radiation. I have a PET scan completed once every 3 months for the first year and if all remains clear, they will stretch them out to once every 4 months, then just twice a year. I also get my CEA and CA19 tested monthly.

I continued to work through all of my treatments (although I have an office job) only missing a few hours here and there for doctor appointments/chemo. For both surgeries, I was out for two weeks while recovering. I always scheduled chemo for Wednesday afternoon with a disconnect from the 5FU on Friday afternoon, allowing the weekend to recover. Saturday after disconnect was always my most tired/fatigued day.

Really, no life changes with regard to diet. My life change is the realization to no longer take anything for granted. I try to experience life to the fullest and have grown to appreciate the little things much more. Career, wife, kids and all the realted activities of parenthood fill my days. Best of luck to you and your husband.

jen2012
Posts: 1186
Joined: Aug 2012

That's great swimmer. I hope my husband has a good response too! May yours continue for a long long time!

janderson1964
Posts: 1526
Joined: Oct 2011

It will be 7 years next week for me. I have had 3 liver resections and 34 rounds of chemo with long periods of NED in between. I am currently NED for the third time. My quality of life is great except the chemo when i have to do it. I was heavily into mountain biking before cancer and am more into it since. I would even mountain bike 2 days after chemo. I radically changed my diet to mostly vegan with a lot of juicing.

jen2012
Posts: 1186
Joined: Aug 2012

J - that is great! Like Craig, you are an inspiration. Thank you for sharing your story.

Randy33
Posts: 48
Joined: Jan 2011

What was the longest period of time you were NED? I will be going on 4 yrs soon and I am interested in knowing if there are many people who go NED for 4 yrs or more and then have a recurrence. I see we follow a similar plan of lots of exercise and good diet. Do you take any supplements? I think its great you have made it for 7 yrs. I hope third times the charm and you stay NED.

Randy

janderson1964
Posts: 1526
Joined: Oct 2011

I do a good amount of supplements as well. I juice 3 times a day. I dont eant to make you nervous but i went 1 1/2 years NED the first time. 4 years the second and am going on a year NED NOW.

HANRSC
Posts: 21
Joined: Apr 2007

CONGATULATIONS!!!!!!!!!!!!!

Great news I am right behind you nearing 7 years in July...All Praise to God!!!!... only had one initial round of chemo in 2006. Wow!!! I am also heavy in mountain bike riding here in Germany. As far as nutrition you and I are on the same page. I screwed-up with my diet between 2007 and 2009 with too much poultry and fish, as a result a small lung MET, since I only eat fish once or twice a month and poultry twice a year. NED since then...didn't think there were many survivors out there with Stage 4. My main ingredient the entire time is a mixture of yoghurt and mixed with frozen berries daily which is suppose to be good for the liver and immune system. In 2006, my surgeon said he would operate on my liver again; so far I proved him wrong. I used the article below as my guidance -

Folfox/avastin Success

I am a 47 year old Aussie who was diagnosed with Stage4+ metastatic bowel cancer in November 2005. I had metastasis’s (tumors) in the bowel (1), lungs (10), liver (7) and lymph nodes (2). The right lobe of the liver was splattered with tumors, the largest being 7cm (3 inches). The left lobe had only one small tumor over lapping from the right junction T4. My CEA, a cancer marker protein was 1560, normal is 5! After the initial shock was over I decided to fight the disease on multiple fronts. I chose to ignore the negative garbage of my oncologist, advising three months to live, and promptly sacked him. There is no place in my life for negative people. The new oncologist sat down with me and plotted a two year survival plan, together, with alternative treatments if the conventional medicine failed. It involved initial radiation treatment (10 days) with five weeks of 5FU, a 40 year old but effective cancer drug. This shrank the tumors about 30%. I then started on a FOLFOX/Avastin treatment, two days a fortnight, with 12 treatments planned. I also played a major role rather than just being a victim. I attended the Petrea King clinic in Australia http://www.petreaking.com.au/ and began to practice at least an hour’s daily meditation and a modified diet. I am a trained food scientist and had always followed a good diet, was very fit, and of normal weight, but realized that early age cancer was probably a failure of the immune system. Accordingly I now eat many immuno stimulating foods. Breakfast is a least a punnet of blueberries, blackberries, raspberries, dark grapes, combined with an active culture yoghurt. Try this and see the increase in the white blood cells, especially neutrophils which target cancer. I drank a daily glass of 3 carrots,2 celery and half a raw beet root. Within two months the lung nodules had disappeared, and ALL tumors had gone within 5 months. We stopped chemotherapy after 8 treatments (21 weeks total) and started surgery aiming for a total cure. Five weeks ago I had the right liver lobe embolised to shrink it and allow the left lobe to grow me a new liver. Last week the bowel was resectioned, and the primary tumor mass removed. There is a lot of debate in the literature about whether to do surgery or not after successful chemotherapy. Detailed pathology revealed some active cancer cells remained in the bowel mass and the lymph, so surgery was essential to ensure the cancers did not come back. In four weeks time the liver will be resectioned, removing all areas which were previously cancerous. I will then finish the remaining 4 treatments of FOLFOX , and finally rejoin the bowel again. Christmas will be wonderful this year! Finally may I say that the love of family and friends has helped me get though this. In December I was in desperate trouble, the bowel was shutting down and only passing black blood. I lost 7kg in three weeks. I was baptized and anointed in oil in front of 300 people in our church. My bowels started working the following day and have worked normally ever since. Being at peace with the Lord has been a major positive in this journey. David

 

IGWT- CHARLES

Rubyrose
Posts: 47
Joined: Feb 2011

My husband diagnosed July 2010 bowel cancer with mets to liver. He had folfox which reduced tumours hopefully for him to have surgery to remove mets in liver. Due to small tumour being in different part of liver where the big tumours were, he had portal vein embolisation which enlarges liver to make surgery possible. Unfortunately the embolisation didn't work. Has had erbitux (cetuximab) which shrunk tumours again. Went to different surgeon who said he could do surgery on liver but needed PVE as before. This one worked. Unfortunately while waiting the timeframe (with no treatment), he had blocked bowel with emergency surgery removing upper bowel and 10cm tumour in December 2011. Now has illeostomy bag. When going in for liver surgery in February this year, surgeon couldn't complete as had spread to stomach lining. Huge disappointment. He went on avastin for three months which worked well at first, then stopped working and CEA levels started going back up. He is now on a new trial drug called regorafenib which appears to be working. He is very tired but otherwise OK and are hoping for improvement in energy levels. Please don't let our story worry you, everybody is different and my husband has aggressive tumours. We have great family and friends support. He is an inspiration to all, will always fight and in a lot of ways we are in a great place. He is determined to get back to golf. We regularly go out to dinner, meet up with friends etc. life is good. Good luck with everything, it is a rollercoaster but you will cope and there are many long term survivors, especially if your husband can have surgery. I would be interested to hear if anybody knows about regorafenib and any more survivors with similar symptoms. We live in Australia.

jen2012
Posts: 1186
Joined: Aug 2012

Hi rubyrose...I'm sorry for your husbands problems. I will pray for good outcome with the new drug. Why don't you post new topic about that ...not many will see your question about it here and I think I remember reading that someone here has been on it.

HANRSC
Posts: 21
Joined: Apr 2007
jjaj133's picture
jjaj133
Posts: 857
Joined: Mar 2011

1. How long since initial diagnosis? 12 years!!
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.
I had mets to the liver after 5 years clear.

3. What has your treatment been - ongoing or have you been out of treatment for extended periods of time.
after a colon resection i was clear for 5 years. It came back in the liver. chemo, resection and chemo. 1 year later, back again. liver resection and Xeloda for 9 months. I am currently NED 20 months as of today. I am chemo free for 1 year.
4. What is your quality of life - do you still work, enjoy everything as you always have. I have the same quality as prior to all this. The only difference is the discomfort from 3 major surgeries.
5. Did you make any life changes - diet, supplements, etc.
Not really, I pretty much think if its gonna come back, there is not a whole lot you can do. I do try and keep active, and I pray a lot. I am 67 and I know I am so fortunate to have made it this far. Many of my friends and family have not. But I am going to suck up every minute of life I can. I am retired and very, aware how blessed I have been. ( I have a bit of neuropathy in my feet. such a small price to pay. )
Jen, there are so many stories,the thread that connects us all is that
we seem to get doses of hope and determination, along with the chemo.
Stage 4 does not mean you are doomed. It means you might have to fight harder and longer. It does not mean you are down for the count.
God bless, Judy

jen2012
Posts: 1186
Joined: Aug 2012

Yay! Great news! Congrats...I hope you are celebrating this weekend. I know there is hope thanks to the Internet! We walked out of that drs office several weeks ago after hearing the 2 yr timeline and felt that was it. I hate that drs do that. Our youngest just turned 1 so hopefully my husband will have the great response that many of you have!

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

Amen Judy!

Your post here is awesome!!

You are inspiration for me and many others.

I'm coming up on a year since this battle began... and honestly, I feel better than I have felt in over 5 years.

crazy... as I certainly didn't think i had a flying hope to feel this good, back when I was in the throws of my first 30 chemo treatments. But, its working.

thanks for sharing judy!

U Rock!

Many blessings to you.

joe

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

1: DX Feb 2004

2: At the time of DX my cancer had already spread to my liver and lungs so I was designated Stage IV

3: I did 6 months of FOLFOX with Avastin, then had surgery to remove the diseased portions of colon and liver. I also had an HAI pump installed to treat any remaining liver issues. I did more chemo after that. From the beginning I also had many lung mets in both lungs so after the colon and liver were "fixed" we concentrated on my lung mets. While the chemo, Erbitux and Irinotecan shrunk and/or stabilized the tumors, there were points when removing the tumors was an option so over the next few years I had 3 lung wedge resections to remove small clusters of tumors that had developed. For the past 4-5 years I've had a total of 5 RFA (Radio Frequency Ablations) to remove a spot or two that have continued to develop. The RFA's are great because the just insert a needle into the tumor, heat up the needle, then the tumor gets dissolved. I've returned home the same day from those.

4: Quality of life has been up and down but I've worked throughout all of this. The surgeries were rough but ever since the RFA's my Quality of life has been good to very good+. I do get some skin issues from the Erbitux and Irinotecan but it's manageable.

5: I've improved my diet somewhat but haven't made any major changes to it. I (try) to keep a positive attitude and sense of humor. I do not view myself as a victim by any means. My view is that Cancer has been a Mixed Blessing.

I was VERY fortunate to hook up with one of the best oncologists in this field at Sloan Kettering, Dr. Nancy Kemeny. I have no doubt that if I had not found her I wouldn't be here today. I've been very fortunate that the right drugs were developed at the right times and became available to me. I've also been very fortunate that I've responded well to the new treatments.
EVERYONE responds differently to treatments and no two cancers or patients are alike. What's helped me may have killed another just as what's killed someone may have helped me. Some people have had great success through diet, others through TCM, and others by who-knows-what.
There is no one size fits all...
-phil
Living With Cancer Since February 2004
:-)

jen2012
Posts: 1186
Joined: Aug 2012

Hi Phil...I'm glad you had a great response. I've been trying to talk my husband into going to Sloan...its a fairly easy drive for us. He likes his Dr here and trusts her. They must use rfa for nodes?? Id think they could... he had 2 removed in the biopsy. Surgeon said they were both positive even though he thinks he only got one of the two that lit up … so I would guess there is at least one more still in there.

I agree a positive attitude goes a long way...he's doing better with that than I am.

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

There are no musts with cancer other than we must try to do our best but even that doesn't really apply.
Some have a fatalist approach to everything...
I've had chemo, wedge resections, and RFAs done on my lungs. The RFA is by FAR the easiest on my body.
The wedge resections were rather major surgery and not a lot of fun...

Being "Happy" with your doctor is nice but I'd rather have one of the brightest minds there is treating me.
I'm not suggesting your husband's doctor isn't smart or isn't good. I'm just saying that I believe mine is smart and good
Attitude may not be the only thing but to me, it plays a HUGE role.
If you think like a winner you'll be on your way to becoming one.
If you think like a victim, you're on your way to becoming one.

A no brainer for me.
Good luck
-phil

Semira's picture
Semira
Posts: 271
Joined: Mar 2012

Jen for starting this thread and all of you for sharing your stories. We (husband is the patient) are facing our 1 year cancervery in nov and it is good to read all you stories.

A hug from germany
Petra

jen2012
Posts: 1186
Joined: Aug 2012

Hi Petra - I'm sorry you guys are dealing with this too. Best to you and your husband!

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

DX 3/25/2008 with rectal tumor

Considered Stage 4 after metastisis was found in lower left lung lobe

Initially I did Folfox to try and eliminate any foreign cancer cells after surgery

Was out of treatment for two years before reoccurence happened

Chemo Folfiri/with Avastin has really done a number on me and quality of life on it for me was near to none

I have opted not to continue treatment........

jen2012
Posts: 1186
Joined: Aug 2012

Buzz - When I first started searching this website back in August, I found many of your posts and were comforted by them. I am so sorry that you have had such a hard time. I wish you peace and happiness.

Chelsea71
Posts: 1168
Joined: Sep 2012

None of my business, however, if Sloan is an option for you guys, I would jump on it. I've noticed that the people who are involved with Sloan and MD Anderson etc. seem to do very well. My cousin was diagnosed with having a fairly rare cancer (leiomyosarcoma) by an oncologist in Syracuse. She was told to go home and enjoy her last few months with her children. (she was 40 with a one year old and a three year old). A friend convinced her to visit Sloan. This was over seven years ago. She has had many surgeries and challenges but it is amazing what they've done for her. Sloan oncologists are the best of the best. I would love to have access to such a great hospital. It's hard isn't it? I run into this a lot. Ultimately, it's Mark's (in my case Steve's) decision as to the details of his course of treatment and it's very important that he is comfortable with the decisions that need to be made. I often wish it was me that had the cancer (instead of Steve) as then I would be able to do everything my way! It is nice though that Mark likes and trust his current onc. There seems to be a lot of people who are stuck with a doctor they don't like.

Take care,

Chelsea

PS - yes, Steves's treatment went really well on Wed. No problems have developed yet. Lots of energy. No nausea etc. Hopefully it will continue.

jen2012
Posts: 1186
Joined: Aug 2012

I know! I'm still trying to convince him - he feels that everything is going well so far where he is and there's no reason to do anything else at this point. We met another man in the chemo room yesterday who is 2 yrs out and has been on chemo the whole time. Mets to lungs. He had his colon surgery at another hospital yrs ago and never had even a temp colosomy, has been doing chemo here, no surgery for lungs, but he looks great and says "it's no big deal"

Glad Steve's treatments are going well.

cinreag
Posts: 154
Joined: Oct 2012

Hi, Buzzard. I was beginning to think I was the only person who had opted to discontinue treatment. Still waiting to see if my "rare form" of cancer is going to met to my liver or not. Will be 3 years in May 2013.

Rubyrose
Posts: 47
Joined: Feb 2011

I saw your last post that you opted not to continue treatment. How are you? Rubyrose

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi everyone,
I used to be very active on this forum but have fallen off in recent years...although I still lurk sometimes.
I was diagnosed in 2002 right before my 32nd birthday. I was later discovered to have a liver met and was treated w/ XELIRI...
In 2004 I had 2 lung mets removed via open thoracotomy (wedge resection) and did not have any chemo after that. I have been NED since. I was treated primarily at MD Anderson and am grateful for finding doctors with a positive attitude and a belief that I could be cured.
I exercise regularly although I do go through periods of laziness (like now, lol.)
I also try to eat right and have taken a variety of supplements over the years. The only Rx that I take now is Celebrex 100 mg/day.

jen2012
Posts: 1186
Joined: Aug 2012

Amazing story - thanks for sharing!! Keep up that exercise!

Did your oncologist prescribe the celebrex?

janderson1964
Posts: 1526
Joined: Oct 2011

Great story. Thank you for sharing it with us.

tanstaafl's picture
tanstaafl
Posts: 945
Joined: Oct 2010

1. Diagnosed March, 2010 after 25% weight lost in 3-4 weeks and near total colon obstruction.
2. Distant lymph nodes, para aortic cluster. Unresolved "thingies" lungs and liver with questionable or minor activity. Mesenteric fat invaded and partially unresectable-couldn't get clean margins with presumable seeding to peritoneum, all dead/necrosed at time of surgery by massive granulocyte attack following cimetidine etc.
3. Permanent, massive immunological treatment from 2nd-3rd day of diagnosis, pallative surgery 4 weeks after dx, permanent immunochemotherapy 6 weeks after surgery. 2nd surgery for para aortic nodes 13.5 months after dx.
4. High quality of life - more physically fit, not chemo sick, not symptomatic.
5. Massive reduction of carbs and bad fats, improved diet with liver, more vegetables and herbs, lots of specialized anticancer supplements and lots of IV vitamin C (over 400 large vit C infusions). Use targeted generic drugs and supplements **not** FDA approved for cancer. Still no oxaliplatin, irinotecan, avastin, or erbitux.

jen2012
Posts: 1186
Joined: Aug 2012

Thanks Tans - I always appreciate your info...you have done your homework! I hope your wife continues to do well.

semicolon811's picture
semicolon811
Posts: 2
Joined: Oct 2012

Hi Jen:

My initial diagnosis was 8/3/11 during a colonoscopy. I had been constipated for a few months and the doctor told me I had IBS and needed more fiber and water. Because I had recently turned 50, he decided to do the colonoscopy. Well, he got about 2" in and found a huge mass. He woke me up saying 'get up - it's bad - you have cancer and need surgery right away". on 8/5/11 I had my Sigmoid Colon removed.
They at first told me it was Stage 3 and I would need 12 rounds of Chemo. When I saw the Oncologist, he told me to get my Port put in and because they saw "small cysts" on my liver, he wanted a PET scan to be sure. He called with the results - they weren't cysts, they were tumors and I was now Stage 4.
I had 5 founds of Chemo - FOLFOX with Avastin and then on 12/6/11, they removed my right lobe of my liver as well as my gall bladder. I started back on chemo a few weeks after surgery, but had a problem and was hospitalized for a week. We tried again, another problem -- they found that I had become allergic to the chemo and I had to stop. I have had 3 scans since I stopped in February (2 CT's and 1 PET) and they all show No Evidence of Disease.
My Oncologist says not to get too excited until I have been "clean for 5 years" and still tells me that my chances are 20% for living 2 - 5 years, but I truly feel that I am healed and have beat this terrible disease!
I am now trying to figure out how to move forward with life - to see what my "new normal" is. 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.

jen2012
Posts: 1186
Joined: Aug 2012

Hi - glad you are doing well! I love your attitude.

I hope you do stick around - to give support and receive support!

PatchAdams
Posts: 272
Joined: Nov 2011

Here's another link to disagree with your onc

http://www2.mdanderson.org/depts/oncolog/articles/11/4-5-aprmay/4-5-11-2.html

The results of the study were recently reported in the Journal of Clinical Oncology. The 3- and 5-year overall survival rates were 67% and 51%, respectively, for patients who underwent at least the first stage of two-stage resection versus 41% and 15%, respectively, for patients who underwent chemotherapy only. The 3- and 5-year overall survival rates were significantly higher (84% and 64%, respectively) among patients who underwent the second stage of resection than among those who underwent the first stage only.

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