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small intestine cancer...headed to clinical trials

tlo
Posts: 6
Joined: Jan 2011

I am creating this page for my husband, Tony. In March of 2010 he was diagnosed with stage IV cancer of the small intestine during a hernia operation (which turned out to be cancer causing the hernia). We chose Vanderbilt as our hospital. At that point, the CT/PET showed tumors on the small intestine, colon, liver, peritoneum and questionable small spots in the lungs. He did four rounds of Fulfiri and the cancer grew, threatening a blockage. He had a 10 hour surgery in early June where the surgeon was able to get 95% of the cancer in the abdominal area and he had an heated intraperitoneal chemo (nicknamed shake and bake) during surgery. The cancer that was left behind was on the pelvic floor (the surgeon would have had to remove his bladder and rectum resulting in two bags if he had taken all of it out). There was also a bit left on the spleen (I still don't get why he didn't remove the spleen) and inside of the liver. After a month, they put him on Folfox and then added avastin into the mix at six weeks. He had four rounds of this. The cancer stayed stable,the lungs did not change, but the doctor wanted to see if he could shrink it so he changed him to Folfoxiri + avastin. We thought surgery would be an option, but the surgeon said that the lungs were inoperable at this point. The first scans were stable, and Tony was excited about getting a chemo break with his last treatment on Dec. 3rd. The scan on Dec. 13th showed that the biggest tumor in the lungs had grown and there were new little spots on the lungs. Everything else was stable. A PET was ordered. A tiny tumor showed up on the femur. Yikes. Needless to say, we were devastated. He received one heavy dose of radiation on that spot which the doctors felt would be eradicated with no problems. His KRAS test showed mutation which will not help him with any standard treatment. Yesterday Tony got his first treatment (pill form) of a cutting edge targeted therapy at Sarah Cannon Research Institute in Nashville. We both need to hear success stories from cancer survivors! Especially those people whose only help was in clinical trials.

walterta's picture
walterta
Posts: 31
Joined: Jan 2011

I don't have a success story, I am going through my second occurance of appendix cancer and had one of my kidneys and part of my small and large intestine removed. I will be starting chemo and radiation at the end of February for the first time. I had to respond to this because I am in admiration of how brave and strong you and your husband are going through such a difficult time it is motivation for me to be brave as well. I want you to know that I will praying for you and your husband and I hope it goes well, please keep updates posted on how things are going. Lots of prayers and love,

Tausha

caseyj
Posts: 29
Joined: Nov 2010

Hello I have small intestine cancer I have not found anyone who has the same cancer as me. I am a 48 year old female. I know it is more common in men. I have read up on it. I had my surgery in Sepetember. I have really struggle with the emotions of having cancer. I had a CT scan in January and they found no cancer. they can not say I am cancer free. I have stage 4 cancer. They do blood test regularly and they showed no cancer so far. I am ready to have another surgery they think its scar tissue from the first surgery. Its hard for me cause I don't have anyone to talk to about all this and having cancer and all. I go from test to test and its like a rollercoaster sometimes. well I pray for your husband hope he is doing well I know how hard it is you are in my prayers.

Casey

msp1953
Posts: 22
Joined: Mar 2011

We have a faith in God and are Christian. If you would allow is we will pray for you.

You are never alone if you have our Lord and Savior in your life....

Love and Prayer coming your way.

maryhopeful
Posts: 7
Joined: Dec 2011

Hi Casey,
Just wondering how you are doing? I recently found out someone I love dearly has this cancer. Any information you could provide would be greatly appreciated.
With love, and hope you are doing well.

Carolyns Daughter
Posts: 4
Joined: May 2012

Had your Cancer spread any where else. My Mother was just diagnosed and it mestized to the Liver. She starts Chemo tomorow. I am hopefull for the whipple procedure, but they first need to see how she responds her Liver to the Chemo. Any feed back would be great. Thank You in Advance

zeanbean
Posts: 2
Joined: Jun 2012

Looks like I am in the same boat as you are. My mother was diagnosed on Monday with Stage IV Duodenal Adenocarcinoma with liver mets. Where is your mother being treated? How do you make the decision? We were told because of the mets in the liver surgery is not possible. Anxious to hear if there is a possibility.

Sincerely,
Christine

caseyj
Posts: 29
Joined: Nov 2010

My name is Casey and I have the same rare cancer as your husband would it be ok to email you here is my email ebaygirl715@yahoo.com I could really use some support and ask you some questions if that would be ok. I will be praying for your husband he sure has gone through alot.

God Bless Casey

jadit
Posts: 1
Joined: Feb 2011

Hi, I was diagnosed 21/12/2007 and I'm still here. Below I've pasted in the text of an email that details my experience - I'm now 61 and still receiving 6 monthly all clears. If you want to talk or have any questions I'd be happy to help in any way.
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Email from Feb 9th 2008

Hi Everyone,
This is a belated thanks to you all of your kind letters, cards, emails & calls expressing your concern and offering support. I promised to keep you up to date but I have been remiss.

Some of you have asked for a brief account of what of went on last year - so here goes.

Last March I started to get mild digestive upsets that I put down to middle age finally catching up. When it was still with me around July time I went to my GP and she suggested it might be an ulcer and prescribed tablets (to no effect). I was then sent for an Ultra scan and an xray which got a little delayed due to vacations - anyway they both came back clear. My problems seemed to lessen and it looked like that it might be clearing up of its own accord. Then towards the end of October I started to get quite severe pains in my upper abdomen and Myra(my wife) pushed for me to immediately to go privately. I had a gastroscopy and a colonoscopy both of which were clear. These procedures look at the top & bottom of the digestive system and I finally had a capsule endoscopy (swallowed a tiny camera that transmitted pictures back to external receiver giving a virtual tour of my small intestine) and this revealed a tumor. Using this information I had a pinpointed MRI and CT scan two days later which revealed a that an adjacent lymph node had also been affected. Two days after this I went into Southend Hospital and had a bowel resection and had both growths removed on 21st December and came home the day after boxing day.
A tumor in the small bowel is fairly rare - less than 2%. They quite often present little or no symptoms and quite often are only discovered postmortem, therefore treatment (chemotherapy) is a best guess scenario. I was fortunate in that my intestine had tried to digest the tumor thinking it was food passing down. This caused the bowel to slip over itself and this was the pain that prompted the capsule endoscopy. The pathology came back on the 11 th January as an "Adena carcinoma with node metastasis C2".
On the 25th I had an consultation with Professor Cunningham of the Royal Marsden. He has the reputation of being one of the world's foremost oncologists and as such the rarer cancers such as mine tend to be referred to him from all over the country. I've subsequently had a PET scan and another targeted MRI and a had the my Blood 'markers' checked and all are showing clear. Because the possibility of undetectable microscopic cancer cells a course of chemotherapy was prescribed and I had my chest port fitted last Thursday and started chemo on Tuesday this week ( Folfox ) I feel fine apart from a little spaced out due to anti nausea medicines.

Many thanks to you all for your kind words and thoughts. Fortunately I am still allowed a modest alcohol intake so JD's Bar is still open with a fine selection of wines, beers and nachos for any body passing........ (also available to attend functions at fairly short notice......)
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Chemo was 'interesting' and and became more so as it progressed - I was left with mild neuropathy in my fingertips and the soles of my feet but apart from that I'm fine.

I still buy lottery tickets but I suspect I may have used up all my luck. If anyone wants to chat I'm available on john@my-my.co.uk

caseyj
Posts: 29
Joined: Nov 2010

Thank you it is nice to hear from someone who has the same cancer I am still having stomach pain they are still doing test after test to see if it is a tumor or what. I will write more later good to see you on here.

Casey

msp1953
Posts: 22
Joined: Mar 2011

Hi,

My husband, Frank, has a new diagnosis of cancer of the small bowel. The tumor was found by accident after having a resection due to a blockage. The blockage turned out to be a cancerous Tumor. The surgeon was not aware of the tumor, he told us after the surgery, "thing were are real mess in there". The pathologist called the surgeon and told him that there was a large tumor in the "mess". Twenty-five lymphoid were removed with eleven tested to have cancer cells. WhAT A SHOCK!

I must say we did not see this coming. My husband has crohn's and most of the symptoms that he exhibited were all assumed to be crohns related. He had a rather serious GI bleed in October...assumed to be crohns. Frank had a congenital heart defect repaired that was discovered after he had a second small stroke during the summer, at which time he was placed on blood thinners...then the GI bleed.... he never got to feeling better. His abdomen was very distended and he began having a lot of pain in areas he would not have associated with crohns (not sure of spelling). Finally, he felt so bad he went to a minor emergency clinic located close to our home. ( I was working) The doctor sent him via ambulance to the nearest hospital emergency room for severe dehydration.

This hospitalization, included a bowel resection, and port placement, lasted for 15 days, he was unable to eat for 13 of the 15 days, the last 2 days he did have jello and broth. He has gone from 178 lbs to 150 lbs in about 3 weeks. He still has drains in his side, we may get those out today.

The surgeon placed a port while we were in the hospital. We see the oncologist tomorrow for the first time since leaving the hospital. It is my understanding from what was said while we were in hospital that the cancer is a Stage 3 and the Chemo of choice is Folfox 6....

I have been on this network looking for information and have had a difficult time finding any information on CA of the small intestine....one responder informed me that this is considered a rare cancer...So there you have it....I am very frightened for my husband, not that he might lose his life, but of the life he may have to endure...I draw hope and encouragement for the post of others.

Thank you all for taking the time to put into words what you have experienced. I know that every person reacts differently to medication, but, when you know the spectrum of what could happen it makes it easier to prepare your mind...

Praise God for all things for it is through Him that all things are possible.

The Wife of a 65 year old sweetheart.

tcp2012
Posts: 2
Joined: Jun 2012

MSP1953 - I hopo your husband is doing well and I would be interested to hear how he is faring the chemo treatment. I just started chemo for stage 3b small bowel cancel and am not sure what to expect. Anyway, I hope you are BOTH hanging in there and getting better.

shairb
Posts: 1
Joined: Apr 2011

Just came from the onocologist. I was floored by the cost of my upcoming treatment, in Ontario OHIP doesnt cover the cost of the treatment. The drug Fal fox, with another will be administrated once wk for two weeks for six months.THe cost is 50,000.My husbands drug plan does nt cover it...so had to find hospital where it is covered by hospital. I was wondering if you had more or less treatments, as the cost is high i am wondering if they are skimmping on the number of times i will receive it...he told me its the only treatment for small bowel, as its rare , they dont know really what to use...this treatment is for colon cancer...has anyone been offered another chem.mix????,,i am scared,

maryhopeful
Posts: 7
Joined: Dec 2011

just came across your post, and am wondering where are you in ONtario???? I thought all chemos were covered. I recently had someone I truly love diagnosed with small bowel cancer. Any information you could give me would be greatly appreciated. I do hope you are doing well, and that treatment is going well? Best wishes.

carl17's picture
carl17
Posts: 15
Joined: Jul 2012

From the date of yur post you may have sorted this by now but my Oncologist went to Cancer Ontario who funded the entire Folfox regime.

Hope you are healty. It is early stages for me. I'm scare too.

shawtkc
Posts: 1
Joined: Jan 2012

I was just diagnosed in Dec. I had a bowel obstruction and they didn't think it was a tumor but when they got in there it was and we just got the pathology report back on Tues. Jan. 3, 2012 and it is malignant. I am referred to an onocologist at Barnes Hosptial in St. Louis, but do not have a game plan as yet. I'd welcome any info on this disease as I am still in shock over it. I'd love to hear success stories.

tcp2012
Posts: 2
Joined: Jun 2012

Apologies in advance as I am new to this site and not a big "blogger". Your story sounds a bit like mine shawtkc. I also had a blockage and when they were operating found the cancer (stage 3b). It is reassuring to hear from others that have this same rare cancer. While they got the tumor out during surgery, I am starting chemo this Friday. I don't have a bunch of knowledge to impart but would recommend reading "Anticancer: A New Way of Life" which I found really information about cancer in general. You may have already figured this out but depending on where the cancer is they will treat either similar to stomach of colon (think colon is more prevalent) if that helps getting more information. It has been some time since your last post and I hope you found a great treatment plan.

smschmidt
Posts: 1
Joined: Jun 2012

My husband was also diagnosed with Stage 4 Small Intestine Cancer. It was found by accident when he collapsed on the golf course from pain in March 2011. After surgery we found that the pain was from peritonitis due to a tumor eating through the intestinal wall. We were in the hospital for 8 days. After 6 weeks he started on Folfuri. He was rechecked in 3 months. The tumors were smaller, but they thought it had spread so he started on a 6 month regimen of Folfox with Avastin. He finished chemo January 2, 2012. He had gotten through the chemo with flying colors. On January 23 he had a CT scan that showed no cancer activity. He had another CT scan on April 30 that showed that the tumors were back and larger. We were looking for a clinical trial when he was hospitalized for a blockage. The blockage was removed May 23 and he got an infection that took another surgery on May 29. At one point we didn't think there was anything else we could do. He is healing well from the surgery though so we are now in search of another clinical trial. Our bodies and minds are amazing. We try to stay positive and lean on our friends and family.

Carolyns Daughter
Posts: 4
Joined: May 2012

My Mother is 62 turning 63 Next week and was diagnosed in April With SBC stage 4 it met to the liver. so far she has had 4 rounds of chemo, the same regimin, folo avaisin FU oxiplotin. Her Tumor in the jiunum is shrinking, but unfortuantly the liver is the same. My big fear is that she still continues to vomit alot and realy can't eat solid foods at all, I want to be hopefull about surgery if the tumor shrinks more so that she can start eating normally again without suffering so much for it but she is deathly afraid of surgery. Please keep in touch, I will keep you and your husband in my prayers. It's so hard to find information about SBC. I want to remain hopefull about new trials coming out as well.

cinreag
Posts: 154
Joined: Oct 2012

Hello, shawtkc, I know your feeling of shock. I experienced it first hand the last week of may 2010. I was being treated for crohns desease when an exploratory surgery found a malignant tumor in my small intestine. It was removed and I was advised to take 6 months of chemo. I took one month and stoppd. I can explain my reasons if you want to hear them. I had a second exploratory surgery in feb. 2011. Nothing was found. I currently have blood work done every three months just so my onc can keep an eye on my markers and such. I live a fairly good life physically. Have some intestinal upset fairly often now. Hoping it isnt anything too serious.
Hope you are doing well, Cindy.

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