› Forums › Cutaneous Melanoma Community › Blood in Stool
- This topic has 99 replies, 10 voices, and was last updated 12 years, 3 months ago by
BrianP.
- Post
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- April 11, 2013 at 9:51 am
Quick background: 2006 .91mm skin mel excised from left chest area; Sep 2011 dx of stage IIIB, axilla disection, 24 nodes removed 2 positive; Nov 2011 local rediation; Dec 2011 begin interferon; Dec 2012 complete interferon; Dec 2012 clear scans (pet and Brain MRI)
Quick background: 2006 .91mm skin mel excised from left chest area; Sep 2011 dx of stage IIIB, axilla disection, 24 nodes removed 2 positive; Nov 2011 local rediation; Dec 2011 begin interferon; Dec 2012 complete interferon; Dec 2012 clear scans (pet and Brain MRI)
I've been feeling a little run down lately so a few weeks ago I ask my Dr to put in lab work for me to check my iron levels. For most of my life I've had a tendency to be anemic at times. Blood work comes back as being anemic. I'm just thinking no big deal, I've been this way my whole life just give me some iron supplements and I'll be on my way. Dr persuades me to give stool samples to see if there is any other underlying causes to my anemia. I reluctantly agree and of course all three stool sampes came back as positive for blood.
My two biggest fears now are 1) I could possibly have colon cancer or 2) this is a reoccurance of my melanoma.
My question to the board is if anyone has seen or heard of blood in the stool as a symptom or indication of possible melanoma reoccurance. I don't recall seeing the stomach or intestines as a location where metasises typically occur. I know there are many other possible less severe diagnosis but as many of you know it's difficult not to be concerned that the mel has returned anytime you have anything out of the ordinary.
Any advice or comments would be greatly appreciated.
Brian
- Replies
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- April 11, 2013 at 9:58 am
You mention that your doctor put you through the tests. Is he your oncologist? Have you spoken to your oncologist? That seems to me to be the first step you need to take. Certainly melanoma can reoccur in the stomach and other places in the digestive route. This may not be melanoma and we certainly hope it isn't, but, given your history, you ought to be aggressive in your attempt to determine with as much certainty as you can muster that it is not. Good luck and may you find out that it is coming from another much more "benign" cause.
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- April 11, 2013 at 9:58 am
You mention that your doctor put you through the tests. Is he your oncologist? Have you spoken to your oncologist? That seems to me to be the first step you need to take. Certainly melanoma can reoccur in the stomach and other places in the digestive route. This may not be melanoma and we certainly hope it isn't, but, given your history, you ought to be aggressive in your attempt to determine with as much certainty as you can muster that it is not. Good luck and may you find out that it is coming from another much more "benign" cause.
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- April 11, 2013 at 9:58 am
You mention that your doctor put you through the tests. Is he your oncologist? Have you spoken to your oncologist? That seems to me to be the first step you need to take. Certainly melanoma can reoccur in the stomach and other places in the digestive route. This may not be melanoma and we certainly hope it isn't, but, given your history, you ought to be aggressive in your attempt to determine with as much certainty as you can muster that it is not. Good luck and may you find out that it is coming from another much more "benign" cause.
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- April 11, 2013 at 10:15 am
It is not common, but I have heard of people having mets along the stomach or intestines. Melanoma most often metastisizes first to the lungs, so among all the other tests you're likely to have in the next few weeks, a CT of your whole body would be in order. For sure, meet with your oncologist. There are many things that could result in blood in the stool; melanoma is probably NOT the culprit. But wouldn't you feel like an idiot if you didn't at least check?
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- April 11, 2013 at 10:15 am
It is not common, but I have heard of people having mets along the stomach or intestines. Melanoma most often metastisizes first to the lungs, so among all the other tests you're likely to have in the next few weeks, a CT of your whole body would be in order. For sure, meet with your oncologist. There are many things that could result in blood in the stool; melanoma is probably NOT the culprit. But wouldn't you feel like an idiot if you didn't at least check?
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- April 11, 2013 at 1:38 pm
Thanks POW. I'm actually due for my 6 month CT scan and will try and get it scheduled immediately. My previous scans have been the full body pet scans. My next is schedule for a CT scan which I think covers from about the groin area up to my neck. That should be good to cover this new concern.
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- April 11, 2013 at 1:38 pm
Thanks POW. I'm actually due for my 6 month CT scan and will try and get it scheduled immediately. My previous scans have been the full body pet scans. My next is schedule for a CT scan which I think covers from about the groin area up to my neck. That should be good to cover this new concern.
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- April 11, 2013 at 1:38 pm
Thanks POW. I'm actually due for my 6 month CT scan and will try and get it scheduled immediately. My previous scans have been the full body pet scans. My next is schedule for a CT scan which I think covers from about the groin area up to my neck. That should be good to cover this new concern.
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- April 11, 2013 at 10:15 am
It is not common, but I have heard of people having mets along the stomach or intestines. Melanoma most often metastisizes first to the lungs, so among all the other tests you're likely to have in the next few weeks, a CT of your whole body would be in order. For sure, meet with your oncologist. There are many things that could result in blood in the stool; melanoma is probably NOT the culprit. But wouldn't you feel like an idiot if you didn't at least check?
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- April 11, 2013 at 12:33 pm
Have you eaten anything like beets, which can make your stool look like there's blood in it?
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- April 11, 2013 at 1:41 pm
Linny,
Haven't eaten beets. Have done research on what else can cause false positives. Was surprised to see things listed like brocoli, carrots, cucumbers, and cauliflower. Some of these things are staples of my diet now. I'm hoping it is a false positive. I'm bought a home test kit to see if it also comes out positive. I'm still treating it like it's an accurate result though.
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- April 11, 2013 at 1:41 pm
Linny,
Haven't eaten beets. Have done research on what else can cause false positives. Was surprised to see things listed like brocoli, carrots, cucumbers, and cauliflower. Some of these things are staples of my diet now. I'm hoping it is a false positive. I'm bought a home test kit to see if it also comes out positive. I'm still treating it like it's an accurate result though.
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- April 11, 2013 at 1:41 pm
Linny,
Haven't eaten beets. Have done research on what else can cause false positives. Was surprised to see things listed like brocoli, carrots, cucumbers, and cauliflower. Some of these things are staples of my diet now. I'm hoping it is a false positive. I'm bought a home test kit to see if it also comes out positive. I'm still treating it like it's an accurate result though.
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- April 11, 2013 at 12:45 pm
Go get it checked out!! That is exactly how my hubby presented…anemic and blood in his stool. He was admitted and had 4 blood tranfusions, 2 infusions of iron, 1 Endoscopy, 1 colonoscopy, 1 CT scan, and a small bowel resection to remove a golf ball sized tumor. He was discharged 14 days later with a dx of stage 4 metastatic melanoma. We were told melanoma “likes” the GI tract. Not necessarily what is going on with you but it sounds scarily like what he went through. Don’t panic….this all happened in January 2011 and my husband had scans last week that showed NED:). Find some good docs and get the ball rolling sooner rather than later! -
- April 11, 2013 at 12:45 pm
Go get it checked out!! That is exactly how my hubby presented…anemic and blood in his stool. He was admitted and had 4 blood tranfusions, 2 infusions of iron, 1 Endoscopy, 1 colonoscopy, 1 CT scan, and a small bowel resection to remove a golf ball sized tumor. He was discharged 14 days later with a dx of stage 4 metastatic melanoma. We were told melanoma “likes” the GI tract. Not necessarily what is going on with you but it sounds scarily like what he went through. Don’t panic….this all happened in January 2011 and my husband had scans last week that showed NED:). Find some good docs and get the ball rolling sooner rather than later! -
- April 11, 2013 at 12:45 pm
Go get it checked out!! That is exactly how my hubby presented…anemic and blood in his stool. He was admitted and had 4 blood tranfusions, 2 infusions of iron, 1 Endoscopy, 1 colonoscopy, 1 CT scan, and a small bowel resection to remove a golf ball sized tumor. He was discharged 14 days later with a dx of stage 4 metastatic melanoma. We were told melanoma “likes” the GI tract. Not necessarily what is going on with you but it sounds scarily like what he went through. Don’t panic….this all happened in January 2011 and my husband had scans last week that showed NED:). Find some good docs and get the ball rolling sooner rather than later! -
- April 11, 2013 at 3:34 pm
Please get this checked out…Yes, my husbands Melanoma went to the intestines. I lost him on Nov 30, 2010….Get this checked quickly.
Tale Care.
Sherron, wife to Sherron FOREVER
profile: Sherron
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- April 11, 2013 at 3:49 pm
Please get this checked out. 3 1/2 years ago my onc noticed that my iron level had trended downward. As a recent CT was clear he ordered a colonoscopy and an endoscopy which also came back negative. We then did a PET scan and found a tumor in my small intestine which was surgically removed. It seems mets in the small intestine can hide from CT scans. I have been NED since then.
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- April 11, 2013 at 3:49 pm
Please get this checked out. 3 1/2 years ago my onc noticed that my iron level had trended downward. As a recent CT was clear he ordered a colonoscopy and an endoscopy which also came back negative. We then did a PET scan and found a tumor in my small intestine which was surgically removed. It seems mets in the small intestine can hide from CT scans. I have been NED since then.
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- April 11, 2013 at 3:49 pm
Please get this checked out. 3 1/2 years ago my onc noticed that my iron level had trended downward. As a recent CT was clear he ordered a colonoscopy and an endoscopy which also came back negative. We then did a PET scan and found a tumor in my small intestine which was surgically removed. It seems mets in the small intestine can hide from CT scans. I have been NED since then.
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- April 12, 2013 at 12:04 am
Thanks Randy,
I talked to my oncologist about scans today. His opinion was that neither Pet or CT scans are particularly great at finding mets in the GI tract but of the two he prefered the CT scan. I'm scheduled for my CT scan in the morning and will have my results in the afternoon. Praying for clean scans! Of course even if they are clean I still need to get to the bottom of why there was blood in my stool. Assuming clean scans the next step will probably be the colonoscopy.
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- April 12, 2013 at 12:21 am
In my case, the CT was clear and the PET picked it up. I guess that because the CT was clear, my onc wanted to do the colonoscopy and endoscopy (which do not cover the entire gi tract) first. Absent any findings there, the PET was the only remaining test to do. Good luck. I'm glad you get results the same day. I'm feel really fortunate that I can have my scans and see my onc with results in three hours or less.
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- April 12, 2013 at 12:21 am
In my case, the CT was clear and the PET picked it up. I guess that because the CT was clear, my onc wanted to do the colonoscopy and endoscopy (which do not cover the entire gi tract) first. Absent any findings there, the PET was the only remaining test to do. Good luck. I'm glad you get results the same day. I'm feel really fortunate that I can have my scans and see my onc with results in three hours or less.
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- April 12, 2013 at 12:21 am
In my case, the CT was clear and the PET picked it up. I guess that because the CT was clear, my onc wanted to do the colonoscopy and endoscopy (which do not cover the entire gi tract) first. Absent any findings there, the PET was the only remaining test to do. Good luck. I'm glad you get results the same day. I'm feel really fortunate that I can have my scans and see my onc with results in three hours or less.
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- April 12, 2013 at 10:41 am
Randy/JMMM,
Did you or your husband have any other GI type symptons when your tumors were found? My onc said something along the lines that if a Pet or CT is able to pick something up that the met is probably up to a size that would be causing other type problems like discomfort or GI track blocking. I I SS
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- April 12, 2013 at 11:16 am
Nope…no other symptoms (although he’s not that aware of what’s going on in his body…he had a brain tumor growing for 6 months and it was the size of a racquetball before he noticed anything was wrong:)). With the GI tumor, he been really run down for weeks and would have a racing heart when doing any activity. By the time he went to his GP, his blood count was 4.9…when he was sent to the ER, the docs had no idea how he was even conscious. It sounds like you’ve jumped on it much sooner than him. Get the tests and get the answers…it could truly be something as “simple” as a bleeding ulcer. Let us know what you find out…I’ll be praying for a simple explaination that is not cancer related. -
- April 12, 2013 at 11:16 am
Nope…no other symptoms (although he’s not that aware of what’s going on in his body…he had a brain tumor growing for 6 months and it was the size of a racquetball before he noticed anything was wrong:)). With the GI tumor, he been really run down for weeks and would have a racing heart when doing any activity. By the time he went to his GP, his blood count was 4.9…when he was sent to the ER, the docs had no idea how he was even conscious. It sounds like you’ve jumped on it much sooner than him. Get the tests and get the answers…it could truly be something as “simple” as a bleeding ulcer. Let us know what you find out…I’ll be praying for a simple explaination that is not cancer related. -
- April 12, 2013 at 11:16 am
Nope…no other symptoms (although he’s not that aware of what’s going on in his body…he had a brain tumor growing for 6 months and it was the size of a racquetball before he noticed anything was wrong:)). With the GI tumor, he been really run down for weeks and would have a racing heart when doing any activity. By the time he went to his GP, his blood count was 4.9…when he was sent to the ER, the docs had no idea how he was even conscious. It sounds like you’ve jumped on it much sooner than him. Get the tests and get the answers…it could truly be something as “simple” as a bleeding ulcer. Let us know what you find out…I’ll be praying for a simple explaination that is not cancer related. -
- April 12, 2013 at 10:41 am
Randy/JMMM,
Did you or your husband have any other GI type symptons when your tumors were found? My onc said something along the lines that if a Pet or CT is able to pick something up that the met is probably up to a size that would be causing other type problems like discomfort or GI track blocking. I I SS
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- April 12, 2013 at 10:41 am
Randy/JMMM,
Did you or your husband have any other GI type symptons when your tumors were found? My onc said something along the lines that if a Pet or CT is able to pick something up that the met is probably up to a size that would be causing other type problems like discomfort or GI track blocking. I I SS
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- April 12, 2013 at 12:04 am
Thanks Randy,
I talked to my oncologist about scans today. His opinion was that neither Pet or CT scans are particularly great at finding mets in the GI tract but of the two he prefered the CT scan. I'm scheduled for my CT scan in the morning and will have my results in the afternoon. Praying for clean scans! Of course even if they are clean I still need to get to the bottom of why there was blood in my stool. Assuming clean scans the next step will probably be the colonoscopy.
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- April 12, 2013 at 12:04 am
Thanks Randy,
I talked to my oncologist about scans today. His opinion was that neither Pet or CT scans are particularly great at finding mets in the GI tract but of the two he prefered the CT scan. I'm scheduled for my CT scan in the morning and will have my results in the afternoon. Praying for clean scans! Of course even if they are clean I still need to get to the bottom of why there was blood in my stool. Assuming clean scans the next step will probably be the colonoscopy.
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- April 12, 2013 at 12:27 pm
There are other things that can cause blood in the stools, even internal hemorrhoids that you may be unaware of. I am glad that as I read down the post, you do have your scan appts, etc. That is just the best thing to do. Get it thoroughly checked out so it can be determined what is causing this and go from there. That is the thing that is different about "us folks" any abnormality like that brings the mel concern to the forefront. I am really glad to hear you can get your reports the same day. Let us know what the Dr has to say & hoping to hear some good news 🙂
Tina
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- April 12, 2013 at 12:27 pm
There are other things that can cause blood in the stools, even internal hemorrhoids that you may be unaware of. I am glad that as I read down the post, you do have your scan appts, etc. That is just the best thing to do. Get it thoroughly checked out so it can be determined what is causing this and go from there. That is the thing that is different about "us folks" any abnormality like that brings the mel concern to the forefront. I am really glad to hear you can get your reports the same day. Let us know what the Dr has to say & hoping to hear some good news 🙂
Tina
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- April 12, 2013 at 12:27 pm
There are other things that can cause blood in the stools, even internal hemorrhoids that you may be unaware of. I am glad that as I read down the post, you do have your scan appts, etc. That is just the best thing to do. Get it thoroughly checked out so it can be determined what is causing this and go from there. That is the thing that is different about "us folks" any abnormality like that brings the mel concern to the forefront. I am really glad to hear you can get your reports the same day. Let us know what the Dr has to say & hoping to hear some good news 🙂
Tina
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- April 13, 2013 at 1:59 am
Thanks to everyone that has replied so far. I am always astounded by how generous people on this site are with their time and knowlegde.
Well good news today was that my scans came back clear. Of course I am ecstatic about that. The bad news is that my blood numbers are still pretty bad. The big number that seems to be concerning my oncologist the most is my HGB is 8.5(normal range 14.0 – 18.0). Several others like iron, WBC, and RBC were low but the HGB was the worst. I've definitely put aside the hope that the stool test was a false positive. There is definitely something going on. Never wanted to have an ulcer so bad in my life. I'm praying it's something like that. Monday morning I have a consult with the gastroenterologist. I imagine the next step is going to be a colonoscopy and endoscopy. Thanks again everyone. Please keep me in your prayers.
Brian
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- April 13, 2013 at 1:59 am
Thanks to everyone that has replied so far. I am always astounded by how generous people on this site are with their time and knowlegde.
Well good news today was that my scans came back clear. Of course I am ecstatic about that. The bad news is that my blood numbers are still pretty bad. The big number that seems to be concerning my oncologist the most is my HGB is 8.5(normal range 14.0 – 18.0). Several others like iron, WBC, and RBC were low but the HGB was the worst. I've definitely put aside the hope that the stool test was a false positive. There is definitely something going on. Never wanted to have an ulcer so bad in my life. I'm praying it's something like that. Monday morning I have a consult with the gastroenterologist. I imagine the next step is going to be a colonoscopy and endoscopy. Thanks again everyone. Please keep me in your prayers.
Brian
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- April 13, 2013 at 1:59 am
Thanks to everyone that has replied so far. I am always astounded by how generous people on this site are with their time and knowlegde.
Well good news today was that my scans came back clear. Of course I am ecstatic about that. The bad news is that my blood numbers are still pretty bad. The big number that seems to be concerning my oncologist the most is my HGB is 8.5(normal range 14.0 – 18.0). Several others like iron, WBC, and RBC were low but the HGB was the worst. I've definitely put aside the hope that the stool test was a false positive. There is definitely something going on. Never wanted to have an ulcer so bad in my life. I'm praying it's something like that. Monday morning I have a consult with the gastroenterologist. I imagine the next step is going to be a colonoscopy and endoscopy. Thanks again everyone. Please keep me in your prayers.
Brian
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- April 13, 2013 at 10:48 pm
Brian,
My husband was diagnosed Stage IV this past January, out of nowhere. He has tumors along his spine, in his pelvis, and a few other places; brain tumor removed in early March after it started to grow rapidly.
He's been on iron since his diagnosis. In February he was hospitalized because he was so weak, blood counts very low. There was dark (almost black) blood in his stool, which the GI folks felt was most probably from the stomach or upper GI tract than from the large intestine (because of its color). It was determined that he has mets in his stomach/esophagus. These would not show up on scans. He had to get blood transfusions almost every 4-5 days.
The great thing is that he has since started Zelboraf, which appears to be working!
Best of luck to you.
Janet
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- April 13, 2013 at 10:48 pm
Brian,
My husband was diagnosed Stage IV this past January, out of nowhere. He has tumors along his spine, in his pelvis, and a few other places; brain tumor removed in early March after it started to grow rapidly.
He's been on iron since his diagnosis. In February he was hospitalized because he was so weak, blood counts very low. There was dark (almost black) blood in his stool, which the GI folks felt was most probably from the stomach or upper GI tract than from the large intestine (because of its color). It was determined that he has mets in his stomach/esophagus. These would not show up on scans. He had to get blood transfusions almost every 4-5 days.
The great thing is that he has since started Zelboraf, which appears to be working!
Best of luck to you.
Janet
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- April 13, 2013 at 10:48 pm
Brian,
My husband was diagnosed Stage IV this past January, out of nowhere. He has tumors along his spine, in his pelvis, and a few other places; brain tumor removed in early March after it started to grow rapidly.
He's been on iron since his diagnosis. In February he was hospitalized because he was so weak, blood counts very low. There was dark (almost black) blood in his stool, which the GI folks felt was most probably from the stomach or upper GI tract than from the large intestine (because of its color). It was determined that he has mets in his stomach/esophagus. These would not show up on scans. He had to get blood transfusions almost every 4-5 days.
The great thing is that he has since started Zelboraf, which appears to be working!
Best of luck to you.
Janet
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- April 25, 2013 at 1:02 pm
Not sure these threads get followed much once the get a few pages back in the forum but if anyone is still following here is a quick update.
The colonoscopy and endonoscopy did not find anything suspicious or anything that looked like it is or was bleeding. I have a follow up appointment today with the Gastroneuologist where I will be pushing hard to do the procedure where you swallow the camera pill. Apparently that is the only way to get a look at the inside of the small intestines. If that doesn't show anything I'm going to push hard for the PetScan based on the information from this thread.
In other news my hemoglobin numbers have improved. It's up to 9.4 (probably strictly due to the iron supplements I'm taking).
Brian
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- April 25, 2013 at 5:41 pm
Brian, I was actually thinking about you just yesterday and wondering if you'd had those procedures done yet.I am sorry you had to endure those tests ( and mostly the prep for them) , but glad they were negative. Good for you for following up and through, though. It is always best, in my opinion, to be certain before discounting such a symptom. Also glad to see that your hgb has improved, and I bet that you are feeling a bit more energetic?
Tina
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- April 25, 2013 at 5:41 pm
Brian, I was actually thinking about you just yesterday and wondering if you'd had those procedures done yet.I am sorry you had to endure those tests ( and mostly the prep for them) , but glad they were negative. Good for you for following up and through, though. It is always best, in my opinion, to be certain before discounting such a symptom. Also glad to see that your hgb has improved, and I bet that you are feeling a bit more energetic?
Tina
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- April 25, 2013 at 5:41 pm
Brian, I was actually thinking about you just yesterday and wondering if you'd had those procedures done yet.I am sorry you had to endure those tests ( and mostly the prep for them) , but glad they were negative. Good for you for following up and through, though. It is always best, in my opinion, to be certain before discounting such a symptom. Also glad to see that your hgb has improved, and I bet that you are feeling a bit more energetic?
Tina
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- April 25, 2013 at 6:39 pm
Melanoma is such a frustrating and scary disease, isn't it? It can metastasize almost anywhere so any symptom you feel in your body COULD be melanoma raising it's ugly head again. When you develop any symptom– pain, swelling, nausea, headaches, bloody stool, anything– first you pray that it is NOT melanoma! When the scans are negative, you are SO relieved! But then you are left wondering, "If it's not melanoma, what is it?" If the doctors can't find the cause of your problem, you can't help but but think that maybe it IS melanoma but it's just too small to show up on scans yet. And so the emotional roller coaster continues. I'm sorry that I do not have any brilliant insights about what could be causing your physical problems, but I most assuredly do understand and sympathize with the emotional ups and downs you are experiencing.
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- April 26, 2013 at 2:12 am
Thanks Tina and POW,
POW, I couldn't have expressed the emotional rollercoaster any better. I've never been a hypochondriac in my life but I feel like now I owe it to my kids (2 and 4) to agressively monitor and check every little sympton I have so they have a father for many years to come.
Interesting development today at the gastroneurologist. During the endonoscopy and colonoscopy from a few days ago the Dr. saw some inflamation in a few places and in particular the beginning part and ending part of my small intestines. He took a biopsy of this area and the results of the biopsy indicated that the inflamation may be the result of celiac disease. I'm familiar with celiac disease but haven't done any indepth research since he told me this. Although the diagnosis of celiac disease isn't something to jump up and down about, it is the first thing that has given me a possible explanation of my situation that does not involve melanoma. I'll take celiac over melanoma any day of the week! In a lot of ways it kind of makes sense. My whole life I've had a tendency to be anemic and maybe that's because I've had a leaning toward celiac disease and it has just recently manifested itself. Perhaps also the year of inferferon triggered something causing the celiac disease. It also kind of falls in line with the mild stomach pains I've had fairly consistently for the last 1 or 2 months. The only thing that doesn't exactly fall in line with the celiac disease is the positive blood in the stool, although my gastroneurologist did say I had some internal hemorrhoids that could cause a positive blood in stool test.
Today I gave blood work that is going to be sent off to somehow be evaluated for the likelihood of celiac disease. I also opted to do the camera pill swallowing procedure for Monday. Although I don't feel completely out of the woods yet the events of today have left me feeling much better. Hoping for continued good news next week.
Brian
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- April 26, 2013 at 2:12 am
Thanks Tina and POW,
POW, I couldn't have expressed the emotional rollercoaster any better. I've never been a hypochondriac in my life but I feel like now I owe it to my kids (2 and 4) to agressively monitor and check every little sympton I have so they have a father for many years to come.
Interesting development today at the gastroneurologist. During the endonoscopy and colonoscopy from a few days ago the Dr. saw some inflamation in a few places and in particular the beginning part and ending part of my small intestines. He took a biopsy of this area and the results of the biopsy indicated that the inflamation may be the result of celiac disease. I'm familiar with celiac disease but haven't done any indepth research since he told me this. Although the diagnosis of celiac disease isn't something to jump up and down about, it is the first thing that has given me a possible explanation of my situation that does not involve melanoma. I'll take celiac over melanoma any day of the week! In a lot of ways it kind of makes sense. My whole life I've had a tendency to be anemic and maybe that's because I've had a leaning toward celiac disease and it has just recently manifested itself. Perhaps also the year of inferferon triggered something causing the celiac disease. It also kind of falls in line with the mild stomach pains I've had fairly consistently for the last 1 or 2 months. The only thing that doesn't exactly fall in line with the celiac disease is the positive blood in the stool, although my gastroneurologist did say I had some internal hemorrhoids that could cause a positive blood in stool test.
Today I gave blood work that is going to be sent off to somehow be evaluated for the likelihood of celiac disease. I also opted to do the camera pill swallowing procedure for Monday. Although I don't feel completely out of the woods yet the events of today have left me feeling much better. Hoping for continued good news next week.
Brian
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- April 26, 2013 at 2:13 pm
Brian,
You've certainly been on quite a roller-coaster ride. And not just an ordinary one, but one of those that turns you upside down and twists you in all sorts of directions. It's good that you've documented and shared this with us. Altough melanoma is never far from the back of your mind when crazy symptoms emerge it's good to know that there are other things they can represent.
I don't know too much about Celiac Disease but what I do know is that it means you'll need to make changes to your diet. I did a quick search to see what some of the causes of it could be and doctors really aren't sure. But I did come across one article that had stated it can cause anemia. And, the latter certainly could account for your blood test results.
I hope and pray that the news for you is good: no melanoma!
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- April 26, 2013 at 2:13 pm
Brian,
You've certainly been on quite a roller-coaster ride. And not just an ordinary one, but one of those that turns you upside down and twists you in all sorts of directions. It's good that you've documented and shared this with us. Altough melanoma is never far from the back of your mind when crazy symptoms emerge it's good to know that there are other things they can represent.
I don't know too much about Celiac Disease but what I do know is that it means you'll need to make changes to your diet. I did a quick search to see what some of the causes of it could be and doctors really aren't sure. But I did come across one article that had stated it can cause anemia. And, the latter certainly could account for your blood test results.
I hope and pray that the news for you is good: no melanoma!
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- April 26, 2013 at 2:13 pm
Brian,
You've certainly been on quite a roller-coaster ride. And not just an ordinary one, but one of those that turns you upside down and twists you in all sorts of directions. It's good that you've documented and shared this with us. Altough melanoma is never far from the back of your mind when crazy symptoms emerge it's good to know that there are other things they can represent.
I don't know too much about Celiac Disease but what I do know is that it means you'll need to make changes to your diet. I did a quick search to see what some of the causes of it could be and doctors really aren't sure. But I did come across one article that had stated it can cause anemia. And, the latter certainly could account for your blood test results.
I hope and pray that the news for you is good: no melanoma!
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- April 26, 2013 at 2:12 am
Thanks Tina and POW,
POW, I couldn't have expressed the emotional rollercoaster any better. I've never been a hypochondriac in my life but I feel like now I owe it to my kids (2 and 4) to agressively monitor and check every little sympton I have so they have a father for many years to come.
Interesting development today at the gastroneurologist. During the endonoscopy and colonoscopy from a few days ago the Dr. saw some inflamation in a few places and in particular the beginning part and ending part of my small intestines. He took a biopsy of this area and the results of the biopsy indicated that the inflamation may be the result of celiac disease. I'm familiar with celiac disease but haven't done any indepth research since he told me this. Although the diagnosis of celiac disease isn't something to jump up and down about, it is the first thing that has given me a possible explanation of my situation that does not involve melanoma. I'll take celiac over melanoma any day of the week! In a lot of ways it kind of makes sense. My whole life I've had a tendency to be anemic and maybe that's because I've had a leaning toward celiac disease and it has just recently manifested itself. Perhaps also the year of inferferon triggered something causing the celiac disease. It also kind of falls in line with the mild stomach pains I've had fairly consistently for the last 1 or 2 months. The only thing that doesn't exactly fall in line with the celiac disease is the positive blood in the stool, although my gastroneurologist did say I had some internal hemorrhoids that could cause a positive blood in stool test.
Today I gave blood work that is going to be sent off to somehow be evaluated for the likelihood of celiac disease. I also opted to do the camera pill swallowing procedure for Monday. Although I don't feel completely out of the woods yet the events of today have left me feeling much better. Hoping for continued good news next week.
Brian
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- April 25, 2013 at 6:39 pm
Melanoma is such a frustrating and scary disease, isn't it? It can metastasize almost anywhere so any symptom you feel in your body COULD be melanoma raising it's ugly head again. When you develop any symptom– pain, swelling, nausea, headaches, bloody stool, anything– first you pray that it is NOT melanoma! When the scans are negative, you are SO relieved! But then you are left wondering, "If it's not melanoma, what is it?" If the doctors can't find the cause of your problem, you can't help but but think that maybe it IS melanoma but it's just too small to show up on scans yet. And so the emotional roller coaster continues. I'm sorry that I do not have any brilliant insights about what could be causing your physical problems, but I most assuredly do understand and sympathize with the emotional ups and downs you are experiencing.
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- April 25, 2013 at 6:39 pm
Melanoma is such a frustrating and scary disease, isn't it? It can metastasize almost anywhere so any symptom you feel in your body COULD be melanoma raising it's ugly head again. When you develop any symptom– pain, swelling, nausea, headaches, bloody stool, anything– first you pray that it is NOT melanoma! When the scans are negative, you are SO relieved! But then you are left wondering, "If it's not melanoma, what is it?" If the doctors can't find the cause of your problem, you can't help but but think that maybe it IS melanoma but it's just too small to show up on scans yet. And so the emotional roller coaster continues. I'm sorry that I do not have any brilliant insights about what could be causing your physical problems, but I most assuredly do understand and sympathize with the emotional ups and downs you are experiencing.
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- April 25, 2013 at 1:02 pm
Not sure these threads get followed much once the get a few pages back in the forum but if anyone is still following here is a quick update.
The colonoscopy and endonoscopy did not find anything suspicious or anything that looked like it is or was bleeding. I have a follow up appointment today with the Gastroneuologist where I will be pushing hard to do the procedure where you swallow the camera pill. Apparently that is the only way to get a look at the inside of the small intestines. If that doesn't show anything I'm going to push hard for the PetScan based on the information from this thread.
In other news my hemoglobin numbers have improved. It's up to 9.4 (probably strictly due to the iron supplements I'm taking).
Brian
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- April 25, 2013 at 1:02 pm
Not sure these threads get followed much once the get a few pages back in the forum but if anyone is still following here is a quick update.
The colonoscopy and endonoscopy did not find anything suspicious or anything that looked like it is or was bleeding. I have a follow up appointment today with the Gastroneuologist where I will be pushing hard to do the procedure where you swallow the camera pill. Apparently that is the only way to get a look at the inside of the small intestines. If that doesn't show anything I'm going to push hard for the PetScan based on the information from this thread.
In other news my hemoglobin numbers have improved. It's up to 9.4 (probably strictly due to the iron supplements I'm taking).
Brian
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- May 4, 2013 at 2:20 am
Well Linny the rollercoaster ride continues.
I'm posting a follow-up because as you mentioned in your reply it's good to document this so maybe someone else with similar symptoms may benefit in the future. As you will see as you read along, I certainly believe that the information others shared with me on this thread may have a significant impact on my survivability.
After my last appointment I felt a slight bit of relieve because we finally had an explanation for my symptoms other than melanoma. I think my gastroenterologist felt the same way. The next step of the plan was to send off the blood sample to test it for the possiblitity of having crohn's disease or celiac. Going into the appointment my emphasis was going to be to fight for the pill endoscopy. A pill endoscopy takes pictures through the whole GI track and is able to get pictures of the small intestines where a regular colonoscopy and endoscopy cannot. After receiving the surprising information about the celiac disease I wasn't sure if the pill endoscopy was necessary or not anymore but because of this thread I eventually came to the conclusion that I would sleep better knowing the small intestines was also clear. The gastroenterologist was on the fence about whether to do it or not but was more than willing to perform the procedure if I wanted. I swallowed the pill on Monday and Tuesday afternoon the Dr called and said he saw two spots that concerned him. One spot looked like a bluish circle that may be vascular (like vericose veins) and the other spot looked like an ulcer but the camera didn't get a good look at it. He suggested I have another endoscopy called a balloon endoscopy which allows them to get further into the small intestines. Amazingly I got this call Tuesday evening and Wednesday afternoon I was having the balloon endoscopy. Fortunately the bluish circle was nothing but unfortuantely the Dr. said the ulcer looked like melanoma. Today I had a petscan which showed a slight return in the area of concern. The radiologist said it was 50/50 whether he would have noticed the area if he wasn't clued in as to where to look. Monday I travel to Duke to meet with my surgical oncologist, Dr Doug Tyler, and I'm scheduled Tuesday for surgery.
I can always pray that after the area is removed and biopsied that it might not be melanoma but at this point that is highly unlikely. On the positive side from all the scopes, the CTScan and the Petscan I feel pretty confident that it's only one spot and after it is resected I can start my NED clock again. I just hope I can break my record of 19 months next time. Thanks again to everyone who has responded. I'll post one more time in couple weeks to let you know the results of the surgery and biopsy. lo
Brian
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- May 4, 2013 at 2:20 am
Well Linny the rollercoaster ride continues.
I'm posting a follow-up because as you mentioned in your reply it's good to document this so maybe someone else with similar symptoms may benefit in the future. As you will see as you read along, I certainly believe that the information others shared with me on this thread may have a significant impact on my survivability.
After my last appointment I felt a slight bit of relieve because we finally had an explanation for my symptoms other than melanoma. I think my gastroenterologist felt the same way. The next step of the plan was to send off the blood sample to test it for the possiblitity of having crohn's disease or celiac. Going into the appointment my emphasis was going to be to fight for the pill endoscopy. A pill endoscopy takes pictures through the whole GI track and is able to get pictures of the small intestines where a regular colonoscopy and endoscopy cannot. After receiving the surprising information about the celiac disease I wasn't sure if the pill endoscopy was necessary or not anymore but because of this thread I eventually came to the conclusion that I would sleep better knowing the small intestines was also clear. The gastroenterologist was on the fence about whether to do it or not but was more than willing to perform the procedure if I wanted. I swallowed the pill on Monday and Tuesday afternoon the Dr called and said he saw two spots that concerned him. One spot looked like a bluish circle that may be vascular (like vericose veins) and the other spot looked like an ulcer but the camera didn't get a good look at it. He suggested I have another endoscopy called a balloon endoscopy which allows them to get further into the small intestines. Amazingly I got this call Tuesday evening and Wednesday afternoon I was having the balloon endoscopy. Fortunately the bluish circle was nothing but unfortuantely the Dr. said the ulcer looked like melanoma. Today I had a petscan which showed a slight return in the area of concern. The radiologist said it was 50/50 whether he would have noticed the area if he wasn't clued in as to where to look. Monday I travel to Duke to meet with my surgical oncologist, Dr Doug Tyler, and I'm scheduled Tuesday for surgery.
I can always pray that after the area is removed and biopsied that it might not be melanoma but at this point that is highly unlikely. On the positive side from all the scopes, the CTScan and the Petscan I feel pretty confident that it's only one spot and after it is resected I can start my NED clock again. I just hope I can break my record of 19 months next time. Thanks again to everyone who has responded. I'll post one more time in couple weeks to let you know the results of the surgery and biopsy. lo
Brian
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- May 4, 2013 at 11:54 am
Oy! It certainly is continuing.
In retrospect it's a good thing that you went with your gut (no pun intended) instinct and pursued this. The only "good" thing about what was found is that it sounds like that ulcerous thing is in an area from which it can be easily resected. Doctors won't know for sure what it is until it's biopsied. Hang in there, Brian.
I'm praying that the biopsy ends up being negative.
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- May 4, 2013 at 11:54 am
Oy! It certainly is continuing.
In retrospect it's a good thing that you went with your gut (no pun intended) instinct and pursued this. The only "good" thing about what was found is that it sounds like that ulcerous thing is in an area from which it can be easily resected. Doctors won't know for sure what it is until it's biopsied. Hang in there, Brian.
I'm praying that the biopsy ends up being negative.
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- May 4, 2013 at 11:54 am
Oy! It certainly is continuing.
In retrospect it's a good thing that you went with your gut (no pun intended) instinct and pursued this. The only "good" thing about what was found is that it sounds like that ulcerous thing is in an area from which it can be easily resected. Doctors won't know for sure what it is until it's biopsied. Hang in there, Brian.
I'm praying that the biopsy ends up being negative.
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- May 4, 2013 at 12:28 pm
Oh, good for you, Brian! I mean, it's not good that you have a lesion that is likely to be melanoma. But I am very impressed with the way you have handled things.
You were alert to the presence of blood in the stool (which I think a lot of people would have ignored because it's embarassing). You immediately got all the right scans and tests. But when the answers were not satisfactory, you went the extra step and educated yourself about uncommon options (the pill camera) and found a doctor who is just as proactive as you are. If I had melanoma, I would want you to be my health advocate!
Again, I am sorry that you have this (probable) recurrance. However, you caught it very early and after the surgery you will again be NED. Not many people can say that. But for your smarts and proactivity, you wouldn't be able to say it, either. Way to go, Brian!
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- May 4, 2013 at 12:28 pm
Oh, good for you, Brian! I mean, it's not good that you have a lesion that is likely to be melanoma. But I am very impressed with the way you have handled things.
You were alert to the presence of blood in the stool (which I think a lot of people would have ignored because it's embarassing). You immediately got all the right scans and tests. But when the answers were not satisfactory, you went the extra step and educated yourself about uncommon options (the pill camera) and found a doctor who is just as proactive as you are. If I had melanoma, I would want you to be my health advocate!
Again, I am sorry that you have this (probable) recurrance. However, you caught it very early and after the surgery you will again be NED. Not many people can say that. But for your smarts and proactivity, you wouldn't be able to say it, either. Way to go, Brian!
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- May 4, 2013 at 12:28 pm
Oh, good for you, Brian! I mean, it's not good that you have a lesion that is likely to be melanoma. But I am very impressed with the way you have handled things.
You were alert to the presence of blood in the stool (which I think a lot of people would have ignored because it's embarassing). You immediately got all the right scans and tests. But when the answers were not satisfactory, you went the extra step and educated yourself about uncommon options (the pill camera) and found a doctor who is just as proactive as you are. If I had melanoma, I would want you to be my health advocate!
Again, I am sorry that you have this (probable) recurrance. However, you caught it very early and after the surgery you will again be NED. Not many people can say that. But for your smarts and proactivity, you wouldn't be able to say it, either. Way to go, Brian!
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- May 4, 2013 at 2:20 am
Well Linny the rollercoaster ride continues.
I'm posting a follow-up because as you mentioned in your reply it's good to document this so maybe someone else with similar symptoms may benefit in the future. As you will see as you read along, I certainly believe that the information others shared with me on this thread may have a significant impact on my survivability.
After my last appointment I felt a slight bit of relieve because we finally had an explanation for my symptoms other than melanoma. I think my gastroenterologist felt the same way. The next step of the plan was to send off the blood sample to test it for the possiblitity of having crohn's disease or celiac. Going into the appointment my emphasis was going to be to fight for the pill endoscopy. A pill endoscopy takes pictures through the whole GI track and is able to get pictures of the small intestines where a regular colonoscopy and endoscopy cannot. After receiving the surprising information about the celiac disease I wasn't sure if the pill endoscopy was necessary or not anymore but because of this thread I eventually came to the conclusion that I would sleep better knowing the small intestines was also clear. The gastroenterologist was on the fence about whether to do it or not but was more than willing to perform the procedure if I wanted. I swallowed the pill on Monday and Tuesday afternoon the Dr called and said he saw two spots that concerned him. One spot looked like a bluish circle that may be vascular (like vericose veins) and the other spot looked like an ulcer but the camera didn't get a good look at it. He suggested I have another endoscopy called a balloon endoscopy which allows them to get further into the small intestines. Amazingly I got this call Tuesday evening and Wednesday afternoon I was having the balloon endoscopy. Fortunately the bluish circle was nothing but unfortuantely the Dr. said the ulcer looked like melanoma. Today I had a petscan which showed a slight return in the area of concern. The radiologist said it was 50/50 whether he would have noticed the area if he wasn't clued in as to where to look. Monday I travel to Duke to meet with my surgical oncologist, Dr Doug Tyler, and I'm scheduled Tuesday for surgery.
I can always pray that after the area is removed and biopsied that it might not be melanoma but at this point that is highly unlikely. On the positive side from all the scopes, the CTScan and the Petscan I feel pretty confident that it's only one spot and after it is resected I can start my NED clock again. I just hope I can break my record of 19 months next time. Thanks again to everyone who has responded. I'll post one more time in couple weeks to let you know the results of the surgery and biopsy. lo
Brian
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- May 23, 2013 at 1:34 am
Final post just to archive this for future searches.
I had surgery to remove the mets in my small intestines on 14 May. The good news is that the Doctor believes he got everything. The bad news is there was a lot more to get than we all anticipated. There were 4 tumors that were removed with the largest one being about 6x7x4 cm. They ended up resecting about 23 cm of small intestines. There were also 20 lymphnodes removed with 19 testing positive for Melanoma. I found it interesting (not sure that's the right word or not) that the only tumor which was spotted during the endoscopy was not the largest tumor. In fact it was one of the smaller of the 4. It really showed me how poor CT scans are at getting mets in the small intestines if they can't even see a 6x7x4 cm tumor. To be honest the Pet really didn't light it up that much either. I think the GI tract is just a tough place to find mets with CT or Pet scans..
The surgery was not as bad as I had anticipated. I've read a couple other threads on here that indicated much worse surgeries than I experienced. I had surgery on Tuesday, Wednesday liquid diet, Thursday started with mushy food, and Friday started regular food and was discharged. Pain was very manageable throughout. I took my last pain medicine on Saturday and haven't felt the need to use any since. I'm still sore but all things considered this was way easier than my axilla disection.
Since I've now entered the Stage IV NED classification I'm now looking at a couple Clinical trials. One is a MEL58 vaccine trial at UVA with Dr. Slingluff and the other is a MAGE trial vaccine with Dr. Weber at Moffitt. I'll be traveling to both sites in a couple weeks before making my decision.
Looking back at the sequence of events I'm not sure I could have done anything differently that would have helped me come to a faster dx than what I did. The only thing I can think of with the power of 20/20 hindsight is that I could have suspected something sooner when I started experiencing very dark stools a couple months ago. I didn't think much of it at the time, partly because I've made a lot of changes to my diet recently and I attributed the darker stools to that. Now that my stools are back to "normal" color I now realize how abnormal the color had been for quite some time.
If anyone reads this and has any other questions please don't hesitate to message me. Prayers to all that are fighting this battle.
Brian
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- May 23, 2013 at 1:34 am
Final post just to archive this for future searches.
I had surgery to remove the mets in my small intestines on 14 May. The good news is that the Doctor believes he got everything. The bad news is there was a lot more to get than we all anticipated. There were 4 tumors that were removed with the largest one being about 6x7x4 cm. They ended up resecting about 23 cm of small intestines. There were also 20 lymphnodes removed with 19 testing positive for Melanoma. I found it interesting (not sure that's the right word or not) that the only tumor which was spotted during the endoscopy was not the largest tumor. In fact it was one of the smaller of the 4. It really showed me how poor CT scans are at getting mets in the small intestines if they can't even see a 6x7x4 cm tumor. To be honest the Pet really didn't light it up that much either. I think the GI tract is just a tough place to find mets with CT or Pet scans..
The surgery was not as bad as I had anticipated. I've read a couple other threads on here that indicated much worse surgeries than I experienced. I had surgery on Tuesday, Wednesday liquid diet, Thursday started with mushy food, and Friday started regular food and was discharged. Pain was very manageable throughout. I took my last pain medicine on Saturday and haven't felt the need to use any since. I'm still sore but all things considered this was way easier than my axilla disection.
Since I've now entered the Stage IV NED classification I'm now looking at a couple Clinical trials. One is a MEL58 vaccine trial at UVA with Dr. Slingluff and the other is a MAGE trial vaccine with Dr. Weber at Moffitt. I'll be traveling to both sites in a couple weeks before making my decision.
Looking back at the sequence of events I'm not sure I could have done anything differently that would have helped me come to a faster dx than what I did. The only thing I can think of with the power of 20/20 hindsight is that I could have suspected something sooner when I started experiencing very dark stools a couple months ago. I didn't think much of it at the time, partly because I've made a lot of changes to my diet recently and I attributed the darker stools to that. Now that my stools are back to "normal" color I now realize how abnormal the color had been for quite some time.
If anyone reads this and has any other questions please don't hesitate to message me. Prayers to all that are fighting this battle.
Brian
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- May 23, 2013 at 1:34 am
Final post just to archive this for future searches.
I had surgery to remove the mets in my small intestines on 14 May. The good news is that the Doctor believes he got everything. The bad news is there was a lot more to get than we all anticipated. There were 4 tumors that were removed with the largest one being about 6x7x4 cm. They ended up resecting about 23 cm of small intestines. There were also 20 lymphnodes removed with 19 testing positive for Melanoma. I found it interesting (not sure that's the right word or not) that the only tumor which was spotted during the endoscopy was not the largest tumor. In fact it was one of the smaller of the 4. It really showed me how poor CT scans are at getting mets in the small intestines if they can't even see a 6x7x4 cm tumor. To be honest the Pet really didn't light it up that much either. I think the GI tract is just a tough place to find mets with CT or Pet scans..
The surgery was not as bad as I had anticipated. I've read a couple other threads on here that indicated much worse surgeries than I experienced. I had surgery on Tuesday, Wednesday liquid diet, Thursday started with mushy food, and Friday started regular food and was discharged. Pain was very manageable throughout. I took my last pain medicine on Saturday and haven't felt the need to use any since. I'm still sore but all things considered this was way easier than my axilla disection.
Since I've now entered the Stage IV NED classification I'm now looking at a couple Clinical trials. One is a MEL58 vaccine trial at UVA with Dr. Slingluff and the other is a MAGE trial vaccine with Dr. Weber at Moffitt. I'll be traveling to both sites in a couple weeks before making my decision.
Looking back at the sequence of events I'm not sure I could have done anything differently that would have helped me come to a faster dx than what I did. The only thing I can think of with the power of 20/20 hindsight is that I could have suspected something sooner when I started experiencing very dark stools a couple months ago. I didn't think much of it at the time, partly because I've made a lot of changes to my diet recently and I attributed the darker stools to that. Now that my stools are back to "normal" color I now realize how abnormal the color had been for quite some time.
If anyone reads this and has any other questions please don't hesitate to message me. Prayers to all that are fighting this battle.
Brian
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Tagged: cutaneous melanoma
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