Melanoma in small intestine

Posted By
2/4/2011 11:59am
View other posts by
Activity
Replies: 9

Been a while since I've posted here as I have had the luxury of being NED since Aug 2009, however a recent appt has unfortunately changed that. Last week a routine blood test showed that I was anemic and had very low red blood cell counts. Doc ordered immediate Pet/CT which showed an active mass in my small intestine, near my liver. I have been experiencing some side pain for the last few weeks but wrote it off due to holiday diet. A subsequent CT showed that indeed there is a mass, likely melanoma in the small intestine, approx 3.6 x 2.9 cm large.

I am in NYC, being treated at Sloan Kettering (Dr. Carvajal) and NY Presbyterian (Dr. Taback). Was recommended that since I am symptomatic, surgery would be the best course of action. Curious to know if anyone else out there has had surgery on the small bowel before to remove melanoma? This appears to be a single lesion.

My brief history:

Aug 2007: DX with melanoma on left knee. Wide area excision and positive sentinel node.

Sept 2007: Lymph node dissection, rest of nodes came back negative.

Nov 2007-Nov 2008 - high dose / low dose Interferon

April 2009:  VATS on left upper lobe of lung with 1cm tumor removed. Same surgery had a sub q removed from thigh.

Aug 2009: had another sub q removed from left thigh. Been NED until last week.

Getting an opinion at NY Presbyterian as well.

If you have had surgery on the bowel (small intestine) I would like to hear from others about recovery time, complications, how difficult surgery was  etc.

Thanks

Wetterhorn

I have had mets in my small intestines twice. But I have been NED for four and a half years since the last time! I had surgery at MD Anderson, and after the first surgery, I did the MEL 44 vaccine trial for a year. I did have a recurrence, but it was only one large tumor. They thought I had mets throughout my intestines, based on the pictures taken by the pill camera... but when they got in,they found that the pigmented areas they saw were benign, and they believe that the mel-44 vaccine may have been doing its job, helping my body fight off additional metastatic growth.

The surgery will keep you  hospitalized for 10-11 days, as they have to make sure the bowels work properly after having some rest. You won't eat or drink for several days while everything heals. You'll have a nasal-gastric tube, which, to me, was the worst part... As soon as they take that out, you'll feel like a new person!

Please feel free to email me at jackiedoss@gmail.com if you have any other questions!!

I can't answer all your   questions, except to ge itt out quickly.  My husband passed away on Nov 30th...He had 14 tumors in his intestines....he was so sick and unstable at the time, they could only take care of one place...that was on Nov 19th...So please go do the surgery now!  Jim complained of stomach pain back in August and would not go to the doctor until October for pain medication...He was anemic and got 4 units of blood on Oct 19th, and several other times...Please don't wait as long as my husband did.   He had 4 great years, did no treatments at all, the boom it got him...He did do the surgery on Nov 19th, but there were just too many...He kept thinking he just had a virus, the food was'nt agreeing with him, until the middle of October when the pain became bad, and begged and pleaded...and from there on he was getting blood every few weeks....I wish you the very, very best...no matter how long it takes to recover, get it out.  I am in a great deal of pain in my heart.  I miss  him so much...43 years together.  I wish he had gone in earlier...I don't know if it would have made a difference if he had gone on in in August or not...No way to tell.  I am just tellilng you my side of it.  I don't regret his decision of no treatment, he made his decision,  and he had 4 QUALITY YEARS...THE only bad time was the last 4 months.

Wishing you best...go get it out!

Take Care,

Sherron, wife to Jim FOREVER

Thanks for sharing your story Sherron. Obviously real sorry to hear about your husband. I just read the profile.

Given the recent scans, the sense of urgency is high, although not quite "emergency surgery" high. I will be going in for surgery either next week or the week after. They believe there is a small amount of internal bleeding, hence the low blood counts, and if my symptoms worsen, I will be going in much sooner.

I have had a good response from all of my prior surgeries thus far (4 and counting) in terms of melanoma not coming back to those specific areas (WLE, Lymph node dissection, VATS on lung, sub q's on thigh) and will be treating this new spot aggressively as well.

yOU can find Jim's story,under Profile, in my name   Sherron   if you want to read how his started, etc.

yOU can find Jim's story,under Profile, in my name   Sherron   if you want to read how his started, etc.

Hey there,

 

Your information sounds a lot like my husband but he did IL-2 when they found the lung mets and after IL-2 got rid of those about 15 months later small intestine mets showed up.  3 lit up on the PET and when they did surgery they got all 3 and repaired the sections. He had a rough surgery because they did 2 resections in his intestine at the time of surgery. The PET is probably right, we were not surprised when my husband did surgery. He has been NED since July 2009, that was his last surgery, sure hope it stays that way. It was a tough recovery as Jackie says the nose drain is the tough part and my husband lost weight from being in the hospital so long and you obviouly can't eat for a while. His incision was from belly button down about 5/6 inches.  They give you the diet information when you leave so be prepared when you get home to have a healthly liquid diet, soups and stuff. You want to be careful with what you eat. My husband had a couple of scares since; he did get constipated and thought it was back so be careful with your diet. It took him quite some time to get back to normal. My husband's was a scheduled surgery as well and he had a blockage, emergency surgery would be much more scary in my mind.

Good luck. Take care of it and maybe this is the last of it.  The NIH doc said to us after reviewing her past records of patients that people that it went from lungs to intestine that 50% never came back after 5 years. Not great numbers but number don't seem to mean anything with this disease.

Rebecca

 

 

 

Believe

I had mets in my small bowels twice - 5 years ago. I had the samy symptoms, some pain, anemic, etc.

My first surgery was easy, very small incision, the worse was the tube as others said. I went home after 5 days and recovered very quickly. My second was not as easy as the incision got infected so I had a second surgery to clean up the infection and couldn't have stiches - I was hospitalized for 10 days.

I have had mets in my lung and spine - the small bowels mets were the latest. All my mets were treated with surgery. I have been NED 5 since Oct 2005. After the last surgery I did GM-CSF/Leukine for 2 years.   

Best of luck with your surgery,

Alicia

Hi,

I initially had a stage 2-3 melanoma on right shoulder back in 1995 and had a wide icision.

In 2010 I was diagnosed with stage 3 melanoma on right lymph node and had redical neck disecction surgery, which was a nightmare. I wore a drainage tune coming out of my neck for 2 months.

 July 1, 2013, I had the romval of a 4cm mass from where small and large intestine meet along with the removal on intussusception of small intestine. The mass came back as melanoma and will see oncologist in one week for adjuvant therapy. In terms of the abdominal surgery,  here is what I had to go through. Initally went to see a GI due to severe abdomianl cramping (lasting 3 hours and oftem times debilitating). We tested for celiac, gluten allergy etc and nothing was wrong. Next I did a CT scan, which indicated I had intussesuption of small intestine, which is rare. Next I had an upper GI with small bowel series and found a 4cm mass where small and large intestine meet. Scheduld surgery and Dr David Park when through naval to find the mass laproscoptically. Next, he made a 2" incision below naval to remove the mass. I was on liquid diet for about 6 days. I confined to the hospital for 4 days and on a dilaudid pump (every hour) for two full days. After surgery  which took one hour, it took about 3.5 hours to get my pain under control. Then they placed me on oral Percocoet 7.5 5000mg. Once I passed gas, I was released from hospital and able to have a soft foods diet for another week and a half. No salad or raw foods during this period. I am drinking lots of water and drinking prune juice every 4 hours to assist with bowel movement. The pain is tolerable with pain meds. I had a bowel movement this morning with nor problems so I recommend prune juice. Praying sor smething not too radical when I meet with Dr David Dubovsky, oncologist on Monday for adjuvant therapy.

Hi,

I initially had a stage 2-3 melanoma on right shoulder back in 1995 and had a wide icision.

In 2010 I was diagnosed with stage 3 melanoma on right lymph node and had redical neck disecction surgery, which was a nightmare. I wore a drainage tune coming out of my neck for 2 months.

 July 1, 2013, I had the romval of a 4cm mass from where small and large intestine meet along with the removal on intussusception of small intestine. The mass came back as melanoma and will see oncologist in one week for adjuvant therapy. In terms of the abdominal surgery,  here is what I had to go through. Initally went to see a GI due to severe abdomianl cramping (lasting 3 hours and oftem times debilitating). We tested for celiac, gluten allergy etc and nothing was wrong. Next I did a CT scan, which indicated I had intussesuption of small intestine, which is rare. Next I had an upper GI with small bowel series and found a 4cm mass where small and large intestine meet. Scheduld surgery and Dr David Park when through naval to find the mass laproscoptically. Next, he made a 2" incision below naval to remove the mass. I was on liquid diet for about 6 days. I confined to the hospital for 4 days and on a dilaudid pump (every hour) for two full days. After surgery  which took one hour, it took about 3.5 hours to get my pain under control. Then they placed me on oral Percocoet 7.5 5000mg. Once I passed gas, I was released from hospital and able to have a soft foods diet for another week and a half. No salad or raw foods during this period. I am drinking lots of water and drinking prune juice every 4 hours to assist with bowel movement. The pain is tolerable with pain meds. I had a bowel movement this morning with nor problems so I recommend prune juice. Praying sor smething not too radical when I meet with Dr David Dubovsky, oncologist on Monday for adjuvant therapy.