› Forums › General Melanoma Community › melanoma in small intestine?
- This topic has 27 replies, 7 voices, and was last updated 11 years, 11 months ago by
Erinmay22.
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- May 25, 2012 at 1:53 am
So I just had my latest scans. I've been lucky to be clear since I had nodules show up in my lungs Jan 2011. This time the scan shows a small section in my small intestine that states there is significant thickening of the wall? I also have several lymph nodes around that area that are swollen.
I must have some sort of small GI bleed since my hemoglobin was down to 5.6 on Tuesday when I went in for my appointment. Got hospitalized to get 3 units of blood and responded very well to it.
So I just had my latest scans. I've been lucky to be clear since I had nodules show up in my lungs Jan 2011. This time the scan shows a small section in my small intestine that states there is significant thickening of the wall? I also have several lymph nodes around that area that are swollen.
I must have some sort of small GI bleed since my hemoglobin was down to 5.6 on Tuesday when I went in for my appointment. Got hospitalized to get 3 units of blood and responded very well to it.
Sounds like the plan right now is to go ahead and start me on Zelboraf. We already know I'm braf+ from my lung biopsy in March 2011. There was talk of surgery but they don't now if they would get all the lymph nodes. So the plan is to start with treatment.
Guess I'm wondering what thoughts/suggestions people have on melanoma in the intestine. I've been told that it's a common place? Wondering if there is a possiblity it could be something other than melanoma? I know the only way to know is a biopsy. Surgeon is saying that the only way to biopsy is to cut open and then might as well just take the section out… I have lots of questions for my next appointment.
Thanks everyone!
Erin
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- May 25, 2012 at 3:44 am
Hi Erin,
Kelly here… my husband has stage 3b mel, I am a nurse. Here's what I know about mel in the sm intestine….
We have a close friend stage 4 mel with multiple recurrences/clinical trials, etc whose last recurrence was in his small intestine. He had abdominal surgery and has been NED for 15 years. When I told this story to Dr Margolin (Mel researcher at UWashington), she told us that mel in the small intestine if meticulously resected can be a cure. I know that sounds a bit extreme but it is truly what she said. She did stress that the surgeon must be highly skilled in the removal GI cancers.. So do your homework and find the top notch doc to do the job.
Best of luck to you!! Kelly
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- May 25, 2012 at 3:44 am
Hi Erin,
Kelly here… my husband has stage 3b mel, I am a nurse. Here's what I know about mel in the sm intestine….
We have a close friend stage 4 mel with multiple recurrences/clinical trials, etc whose last recurrence was in his small intestine. He had abdominal surgery and has been NED for 15 years. When I told this story to Dr Margolin (Mel researcher at UWashington), she told us that mel in the small intestine if meticulously resected can be a cure. I know that sounds a bit extreme but it is truly what she said. She did stress that the surgeon must be highly skilled in the removal GI cancers.. So do your homework and find the top notch doc to do the job.
Best of luck to you!! Kelly
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- May 25, 2012 at 3:44 am
Hi Erin,
Kelly here… my husband has stage 3b mel, I am a nurse. Here's what I know about mel in the sm intestine….
We have a close friend stage 4 mel with multiple recurrences/clinical trials, etc whose last recurrence was in his small intestine. He had abdominal surgery and has been NED for 15 years. When I told this story to Dr Margolin (Mel researcher at UWashington), she told us that mel in the small intestine if meticulously resected can be a cure. I know that sounds a bit extreme but it is truly what she said. She did stress that the surgeon must be highly skilled in the removal GI cancers.. So do your homework and find the top notch doc to do the job.
Best of luck to you!! Kelly
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- May 25, 2012 at 5:17 am
Hi Erin,
I had something almot identical around a month ago. Thickening of the bowel wall, and also an intussusception that was causing some problems. I am also on a BRAF inhibitor. My hemoglobin went to 8, felt pretty bad! I had surgery, and they removed a 20mm x 30mm bowel me (and 12.6cm of small bowel). Interestingly, this did not show up on a CT. They ran through the rest of the bowel to make sure it was clear (it was).
The surgery was painful, though I recovered quickly. I am very glad it was done, and now I have another scar for the collection. I would assume that some similar treatment be prescribed for you.
Hope this helps,
Ben.
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- May 25, 2012 at 5:17 am
Hi Erin,
I had something almot identical around a month ago. Thickening of the bowel wall, and also an intussusception that was causing some problems. I am also on a BRAF inhibitor. My hemoglobin went to 8, felt pretty bad! I had surgery, and they removed a 20mm x 30mm bowel me (and 12.6cm of small bowel). Interestingly, this did not show up on a CT. They ran through the rest of the bowel to make sure it was clear (it was).
The surgery was painful, though I recovered quickly. I am very glad it was done, and now I have another scar for the collection. I would assume that some similar treatment be prescribed for you.
Hope this helps,
Ben.
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- May 25, 2012 at 5:17 am
Hi Erin,
I had something almot identical around a month ago. Thickening of the bowel wall, and also an intussusception that was causing some problems. I am also on a BRAF inhibitor. My hemoglobin went to 8, felt pretty bad! I had surgery, and they removed a 20mm x 30mm bowel me (and 12.6cm of small bowel). Interestingly, this did not show up on a CT. They ran through the rest of the bowel to make sure it was clear (it was).
The surgery was painful, though I recovered quickly. I am very glad it was done, and now I have another scar for the collection. I would assume that some similar treatment be prescribed for you.
Hope this helps,
Ben.
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- May 25, 2012 at 11:08 am
Erin,
My husband had 3 small tumors removed from his small intestine, one showed up as intussusception. He had surgery, with two areas of the small bowel resected. He was in the hospital for 5 days and in about 10 days he was getting back to his normal self. They did exploratory surgery during and did not find it anywhere else. It was a rough surgery but the he was able to schedule it not go in on an emergency basis. He had a great surgeon at NIH. Make sure you do find a good surgeon and at least get an opinion from them on what they think they can do. My husband also had it in his lungs and that was treated with IL-2 and VATS before the intestinal mets showed up a year later.
Our NIH doctor was also more on the positive side with us after complete resection. My husband has been NED almost 3 years, coming up in July. Still praying for NED.
Good luck in your choice.
Rebecca
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- May 25, 2012 at 11:08 am
Erin,
My husband had 3 small tumors removed from his small intestine, one showed up as intussusception. He had surgery, with two areas of the small bowel resected. He was in the hospital for 5 days and in about 10 days he was getting back to his normal self. They did exploratory surgery during and did not find it anywhere else. It was a rough surgery but the he was able to schedule it not go in on an emergency basis. He had a great surgeon at NIH. Make sure you do find a good surgeon and at least get an opinion from them on what they think they can do. My husband also had it in his lungs and that was treated with IL-2 and VATS before the intestinal mets showed up a year later.
Our NIH doctor was also more on the positive side with us after complete resection. My husband has been NED almost 3 years, coming up in July. Still praying for NED.
Good luck in your choice.
Rebecca
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- May 25, 2012 at 11:08 am
Erin,
My husband had 3 small tumors removed from his small intestine, one showed up as intussusception. He had surgery, with two areas of the small bowel resected. He was in the hospital for 5 days and in about 10 days he was getting back to his normal self. They did exploratory surgery during and did not find it anywhere else. It was a rough surgery but the he was able to schedule it not go in on an emergency basis. He had a great surgeon at NIH. Make sure you do find a good surgeon and at least get an opinion from them on what they think they can do. My husband also had it in his lungs and that was treated with IL-2 and VATS before the intestinal mets showed up a year later.
Our NIH doctor was also more on the positive side with us after complete resection. My husband has been NED almost 3 years, coming up in July. Still praying for NED.
Good luck in your choice.
Rebecca
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- May 25, 2012 at 12:05 pm
Erin, I am sorry to read this. I was hoping that your immune system could keep you free
of melanoma without the need for treatment. However, the interaction between the immune
system and malignant cells is a complex and variable process that is yet to be fully
understood. Therefore, it is always wise to be vigilant and to pick up problems early as you have done.Surgery is a good option. Zelboraf can also be very effective; however, newer drugs such
as MEK/PI3K or HSP90 inhibitors (XL888) should ideally be included in the treatment
plan. (See:
http://clincancerres.aacrjournals.org/content/early/2012/02/18/1078-0432.CCR-11-2612).Take care
Frank from Australia
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- May 25, 2012 at 12:05 pm
Erin, I am sorry to read this. I was hoping that your immune system could keep you free
of melanoma without the need for treatment. However, the interaction between the immune
system and malignant cells is a complex and variable process that is yet to be fully
understood. Therefore, it is always wise to be vigilant and to pick up problems early as you have done.Surgery is a good option. Zelboraf can also be very effective; however, newer drugs such
as MEK/PI3K or HSP90 inhibitors (XL888) should ideally be included in the treatment
plan. (See:
http://clincancerres.aacrjournals.org/content/early/2012/02/18/1078-0432.CCR-11-2612).Take care
Frank from Australia
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- May 25, 2012 at 12:05 pm
Erin, I am sorry to read this. I was hoping that your immune system could keep you free
of melanoma without the need for treatment. However, the interaction between the immune
system and malignant cells is a complex and variable process that is yet to be fully
understood. Therefore, it is always wise to be vigilant and to pick up problems early as you have done.Surgery is a good option. Zelboraf can also be very effective; however, newer drugs such
as MEK/PI3K or HSP90 inhibitors (XL888) should ideally be included in the treatment
plan. (See:
http://clincancerres.aacrjournals.org/content/early/2012/02/18/1078-0432.CCR-11-2612).Take care
Frank from Australia
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- May 25, 2012 at 2:32 pm
Erin, get to it quickly….My husband passed away on Nov 30, 2010….but went only Alternative …no surgeries, no trial, no WLE, No SNB….He lived for 4 years 3 months just great……had a great life, this is the way he wanted it…He was about quality life, not quanity……then boom, it exploded all over him, with the worst being in the intestines…They did do an emergency surgery, on the 19th, and he had 13 tumors….they took care of the immediate problems, but by then , it was too late to take care of the other tumors, too many, and he had been getting tranfusions every 2 weeks. He never got to go home…on the 29th he went to Hospice and he passed within 12 hours.
Take Care,
Sherron, wife to Jim FOREVER
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- May 25, 2012 at 2:32 pm
Erin, get to it quickly….My husband passed away on Nov 30, 2010….but went only Alternative …no surgeries, no trial, no WLE, No SNB….He lived for 4 years 3 months just great……had a great life, this is the way he wanted it…He was about quality life, not quanity……then boom, it exploded all over him, with the worst being in the intestines…They did do an emergency surgery, on the 19th, and he had 13 tumors….they took care of the immediate problems, but by then , it was too late to take care of the other tumors, too many, and he had been getting tranfusions every 2 weeks. He never got to go home…on the 29th he went to Hospice and he passed within 12 hours.
Take Care,
Sherron, wife to Jim FOREVER
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- May 25, 2012 at 2:32 pm
Erin, get to it quickly….My husband passed away on Nov 30, 2010….but went only Alternative …no surgeries, no trial, no WLE, No SNB….He lived for 4 years 3 months just great……had a great life, this is the way he wanted it…He was about quality life, not quanity……then boom, it exploded all over him, with the worst being in the intestines…They did do an emergency surgery, on the 19th, and he had 13 tumors….they took care of the immediate problems, but by then , it was too late to take care of the other tumors, too many, and he had been getting tranfusions every 2 weeks. He never got to go home…on the 29th he went to Hospice and he passed within 12 hours.
Take Care,
Sherron, wife to Jim FOREVER
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- May 25, 2012 at 3:52 pm
Erin,
So sorry to see this latest news. Praying that the Zelboraf will be your silver bullet.
Keeping you in my prayers.
barb
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- May 25, 2012 at 3:52 pm
Erin,
So sorry to see this latest news. Praying that the Zelboraf will be your silver bullet.
Keeping you in my prayers.
barb
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- May 25, 2012 at 6:05 pm
Thanks Everyone!
Frank – yes I was hoping also that my immune system could keep it at bay! Although my family thinks it's because I've been trying to do way too much.
They want to start Zelboraf right away to try and stop anything that is going on. My only concern is that what if it's not melanoma? Should I be asking for a PET? They said biopsy isn't easy of the area without surgery. Darn Melanoma.
So stay tuned… Never a dull moment on the Melanoma roller coaster!
Erin
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- May 25, 2012 at 6:05 pm
Thanks Everyone!
Frank – yes I was hoping also that my immune system could keep it at bay! Although my family thinks it's because I've been trying to do way too much.
They want to start Zelboraf right away to try and stop anything that is going on. My only concern is that what if it's not melanoma? Should I be asking for a PET? They said biopsy isn't easy of the area without surgery. Darn Melanoma.
So stay tuned… Never a dull moment on the Melanoma roller coaster!
Erin
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- May 26, 2012 at 2:50 am
Erin, I think that you should definitely be asking for a PET scan now. In fact, I wonder why you haven't already been scheduled for one as soon as the CT scan result was known? The concept of starting Zelboraf without the PET results is unwise as it assumes that melanoma is the only thing that can be the cause of the issue.
At the moment, there is not enough evidence to say that the problem is being caused by melanoma – so why start Zelboraf based on an assumption?
Good luck and take care.
Frank from Australia
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- May 26, 2012 at 2:50 am
Erin, I think that you should definitely be asking for a PET scan now. In fact, I wonder why you haven't already been scheduled for one as soon as the CT scan result was known? The concept of starting Zelboraf without the PET results is unwise as it assumes that melanoma is the only thing that can be the cause of the issue.
At the moment, there is not enough evidence to say that the problem is being caused by melanoma – so why start Zelboraf based on an assumption?
Good luck and take care.
Frank from Australia
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- May 27, 2012 at 1:39 am
Hi frank –Yes I am going to ask about a pet on Tuesday when I am back to see my oncologist. While I keep being told that small intestine is common place for melanoma – I want to know for sure! What if it’s just something like irritable bowel disease? My stomach pain started when I had the flu really bad in December/jan. I thought I gave myself an ulcer from all the cough drops and cold pills I took.
But I know im in good hands – I trust my doctors at Sloan. I just don’t want to automatically assume melanoma is back.
So stay tuned!
Erin -
- May 27, 2012 at 1:39 am
Hi frank –Yes I am going to ask about a pet on Tuesday when I am back to see my oncologist. While I keep being told that small intestine is common place for melanoma – I want to know for sure! What if it’s just something like irritable bowel disease? My stomach pain started when I had the flu really bad in December/jan. I thought I gave myself an ulcer from all the cough drops and cold pills I took.
But I know im in good hands – I trust my doctors at Sloan. I just don’t want to automatically assume melanoma is back.
So stay tuned!
Erin -
- May 27, 2012 at 1:39 am
Hi frank –Yes I am going to ask about a pet on Tuesday when I am back to see my oncologist. While I keep being told that small intestine is common place for melanoma – I want to know for sure! What if it’s just something like irritable bowel disease? My stomach pain started when I had the flu really bad in December/jan. I thought I gave myself an ulcer from all the cough drops and cold pills I took.
But I know im in good hands – I trust my doctors at Sloan. I just don’t want to automatically assume melanoma is back.
So stay tuned!
Erin -
- May 26, 2012 at 2:50 am
Erin, I think that you should definitely be asking for a PET scan now. In fact, I wonder why you haven't already been scheduled for one as soon as the CT scan result was known? The concept of starting Zelboraf without the PET results is unwise as it assumes that melanoma is the only thing that can be the cause of the issue.
At the moment, there is not enough evidence to say that the problem is being caused by melanoma – so why start Zelboraf based on an assumption?
Good luck and take care.
Frank from Australia
-
- May 25, 2012 at 6:05 pm
Thanks Everyone!
Frank – yes I was hoping also that my immune system could keep it at bay! Although my family thinks it's because I've been trying to do way too much.
They want to start Zelboraf right away to try and stop anything that is going on. My only concern is that what if it's not melanoma? Should I be asking for a PET? They said biopsy isn't easy of the area without surgery. Darn Melanoma.
So stay tuned… Never a dull moment on the Melanoma roller coaster!
Erin
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- May 25, 2012 at 3:52 pm
Erin,
So sorry to see this latest news. Praying that the Zelboraf will be your silver bullet.
Keeping you in my prayers.
barb
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