So, anyone know anything about neuroendocrine tumors?? Apparently a few of my co workers just attended a cancer conference and one of the speakers was a Dr Eric Liu from here in Denver and specializes in neuroendocrine tumors. One of them just texted me about it because she feels like I fit some of it given my continued anxiety, diarrhea, etc. I told her that my MC was diagnosed by biopsy and that I just recently had an abdominal/pelvic CT with oral and iv contrast...wouldn't something have shown up then??
I gotta give it to her....I still battle with the anxiety thing. And I am slathering myself with mag lotion people. Have started adding drops of ReMag back into water but not much. Nothing oral pill wise....
Anyone, anyone???
Laine
Neuroendocrine tumors
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Neuroendocrine tumors
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Spoke to another one of my therapists today. Apparently diarrhea is a big thing with these neuroendocrine carcinoid tumors. The Dr (one of 3 specialists in the world apparently..) said that it takes people 5-6 years on average to get diagnosed and most of them are chained to the house with diarrhea. Interesting.....I guess my coworkers all looked at each other at this conference as they felt that so much applied to me...at least they care!!
So, to be thorough I talked to my Internal Med doc this morning and he is going to order me the initial blood and urine tests. Blood test is chromogranin A (CgA) and the urine test is 5 hydroxyindoleacetic acid (5 HIAA). I guess if these are positive then you go on for more testing. He will call back later when he figures out which lab is best for these tests.
Anyone ever heard of this or know anything about this stuff??? I did a little more reading last night and apparently the "classic triad of symptoms is flushing/redness, diarrhea and anxiety/palpitations". "Stress can be a trigger for many patients and pt's are often misdiagnosed with PTSD or anxiety attacks".
Laine
So, to be thorough I talked to my Internal Med doc this morning and he is going to order me the initial blood and urine tests. Blood test is chromogranin A (CgA) and the urine test is 5 hydroxyindoleacetic acid (5 HIAA). I guess if these are positive then you go on for more testing. He will call back later when he figures out which lab is best for these tests.
Anyone ever heard of this or know anything about this stuff??? I did a little more reading last night and apparently the "classic triad of symptoms is flushing/redness, diarrhea and anxiety/palpitations". "Stress can be a trigger for many patients and pt's are often misdiagnosed with PTSD or anxiety attacks".
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Dear Laine,
Please don't worry. I know it is hard to do. Health anxiety is something I have only known for the past five years or so. And having a ton of symptoms due to MC makes it even harder!!! I had a lot of unexplained symptoms before I was able to manage MC with my diet (thanks to the wonderful people on here!) and each doctor I saw could think of several cancers that could cause my symptoms (which made it even worse since I had just lost my best friend to cancer). Obviously, I went through every test they suggested, and worried terribly while waiting for the test, and then while waiting for the result of the test.
One time, when I saw my gastroenterologist, I mentioned that I still had this weird rash on my face (only my right cheek). He said, hmm, rash, diarrhea, ..... well, there is a type of cancer that can cause this. They are big carcinoid tumors. I had gone in that morning feeling pretty good overall. Well, my heart dropped, my blood pressure went up, my heart rate went up, and I walked out thinking, what the heck just happened? I asked him where those tumors would be. By then I had lost over 20 pounds, so where would these big tumors hide??? He said in the abdominal region. I said but I just had a CT scan of the abdomen, ordered by the urologist, who I had seen because they PCP found blood in the urine test and thought I might have bladder cancer (not true either). He looked at the CT scan result and said, hmm, well, yes, they would have seen any tumors on there, but I will order additional tests anyway, to be on the safe side. So he ordered the tests you mentioned. I know I had the blood test, the chromogranin A, I cannot remember if I had the urine test or not. At the time I went through so much testing by so many doctors. The gastroenterologist then said, I should see a pulmonologist, because the CT scan of the abdomen showed nodules in my lungs. So then I had to have a chest CT (and they are still following up on those nodules because they are "larger" ones).
Anyway, the carcinoid test results came back as completely normal, no carcinoid tumors.
I later mentioned the rash to my dermatologist and that the gastroenterologist thought it might be due to carcinoid tumors. The dermatologist laughed and said, and that rash would look very different from the one you have.
I think all of this was in 2015, spring, so about 2.5 years ago. Nobody has mentioned any carcinoid tumors to me since and I do not believe that I have any. But I remember how scared I was at the time. So please try not to worry. Do the tests, and you will feel better when they come back normal.
Love, Patricia
Please don't worry. I know it is hard to do. Health anxiety is something I have only known for the past five years or so. And having a ton of symptoms due to MC makes it even harder!!! I had a lot of unexplained symptoms before I was able to manage MC with my diet (thanks to the wonderful people on here!) and each doctor I saw could think of several cancers that could cause my symptoms (which made it even worse since I had just lost my best friend to cancer). Obviously, I went through every test they suggested, and worried terribly while waiting for the test, and then while waiting for the result of the test.
One time, when I saw my gastroenterologist, I mentioned that I still had this weird rash on my face (only my right cheek). He said, hmm, rash, diarrhea, ..... well, there is a type of cancer that can cause this. They are big carcinoid tumors. I had gone in that morning feeling pretty good overall. Well, my heart dropped, my blood pressure went up, my heart rate went up, and I walked out thinking, what the heck just happened? I asked him where those tumors would be. By then I had lost over 20 pounds, so where would these big tumors hide??? He said in the abdominal region. I said but I just had a CT scan of the abdomen, ordered by the urologist, who I had seen because they PCP found blood in the urine test and thought I might have bladder cancer (not true either). He looked at the CT scan result and said, hmm, well, yes, they would have seen any tumors on there, but I will order additional tests anyway, to be on the safe side. So he ordered the tests you mentioned. I know I had the blood test, the chromogranin A, I cannot remember if I had the urine test or not. At the time I went through so much testing by so many doctors. The gastroenterologist then said, I should see a pulmonologist, because the CT scan of the abdomen showed nodules in my lungs. So then I had to have a chest CT (and they are still following up on those nodules because they are "larger" ones).
Anyway, the carcinoid test results came back as completely normal, no carcinoid tumors.
I later mentioned the rash to my dermatologist and that the gastroenterologist thought it might be due to carcinoid tumors. The dermatologist laughed and said, and that rash would look very different from the one you have.
I think all of this was in 2015, spring, so about 2.5 years ago. Nobody has mentioned any carcinoid tumors to me since and I do not believe that I have any. But I remember how scared I was at the time. So please try not to worry. Do the tests, and you will feel better when they come back normal.
Love, Patricia
Be gentle with yourself. Be kind to yourself. You may not be perfect, but you are all you’ve got to work with.
- Bhante Gunaratana
- Bhante Gunaratana
Thanks Patricia....
This is all a wierdo thing. I had never even heard of this stuff!!! It is interesting anyway. I don't have a rash on my face, but I do get this wierdo thing on the front of my thighs if I am in the sun for any length of time. And really, that was only riding my bike (which I have rarely done in the past year and a half due to my life situation and the MC) and I got sun. And this was with 50 SPF sunscreen on AND bike shorts. It almost looks vascular...like irritated little arteries... Like I said, haven't noticed this in the past year and a half as my thighs have rarely been in the sun.
Not that anyone wants some carcinoid tumor, but at least it would be an answer you know?? I just feel like I have been chasing my tail for SO long with no significant lasting change in my situation. I need to be able to have some sort of life...as what I have been going through this whole year aint living folks.
I have been on the Budosenide (sp?) for a week now. Still taking 6 packets of cholestyramine a day also. Still not back at work, this is week 6 out. Haven't been paid any of my short term disability either, though they finally did ok the claim but starting way later than it should have. I still don't have normal poop, or anything that will wait more than 1 minute if needed...urgency is still an issue. So, I don't think the type of work I do is possible yet...and will it ever be possible really?? Even with a Depends...if I had a secretarial job where there was a bathroom very close to my desk that I knew was available....then ya, I could go back to work. But working with a stroke patient...even if I am in the gym or in their room...I don't think I could safely get them back situated in bed or in a chair if I needed to "GO" like I need to right now...
And I haven't weighed myself since the colonoscopy 2 weeks ago. That was 100# at 5' 6". Typically I feel good at 123# which everyone thinks is thin. Geez, what I would give to weigh about 140#...I hate getting in the shower or changing clothes and spying my skeletal self in the mirror. It is so scary. That's the thing that really scares me, not being able to gain weight.
So, we will see what those 2 tests show....but thanks for the kind word!!
Laine
This is all a wierdo thing. I had never even heard of this stuff!!! It is interesting anyway. I don't have a rash on my face, but I do get this wierdo thing on the front of my thighs if I am in the sun for any length of time. And really, that was only riding my bike (which I have rarely done in the past year and a half due to my life situation and the MC) and I got sun. And this was with 50 SPF sunscreen on AND bike shorts. It almost looks vascular...like irritated little arteries... Like I said, haven't noticed this in the past year and a half as my thighs have rarely been in the sun.
Not that anyone wants some carcinoid tumor, but at least it would be an answer you know?? I just feel like I have been chasing my tail for SO long with no significant lasting change in my situation. I need to be able to have some sort of life...as what I have been going through this whole year aint living folks.
I have been on the Budosenide (sp?) for a week now. Still taking 6 packets of cholestyramine a day also. Still not back at work, this is week 6 out. Haven't been paid any of my short term disability either, though they finally did ok the claim but starting way later than it should have. I still don't have normal poop, or anything that will wait more than 1 minute if needed...urgency is still an issue. So, I don't think the type of work I do is possible yet...and will it ever be possible really?? Even with a Depends...if I had a secretarial job where there was a bathroom very close to my desk that I knew was available....then ya, I could go back to work. But working with a stroke patient...even if I am in the gym or in their room...I don't think I could safely get them back situated in bed or in a chair if I needed to "GO" like I need to right now...
And I haven't weighed myself since the colonoscopy 2 weeks ago. That was 100# at 5' 6". Typically I feel good at 123# which everyone thinks is thin. Geez, what I would give to weigh about 140#...I hate getting in the shower or changing clothes and spying my skeletal self in the mirror. It is so scary. That's the thing that really scares me, not being able to gain weight.
So, we will see what those 2 tests show....but thanks for the kind word!!
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Dear Laine,
I am so sorry to hear all of this. I sure hope the Budesonide will work for you!!!
I totally get what you mean about getting in the shower. I was 140# before MC and now I am between 110 and 114# (also 5' 6"). I am grateful that my weight has been very stable for the past 2 years or so, but I am still not used to my skinny body. And it doesn't help that I found several palpable lymph nodes in the groin area on both sides while showering 1.5 years ago. Finding enlarged lymph nodes while losing a ton of weight is not exactly reassuring. I am always afraid I will find more lymph nodes somewhere on my body. My PCP was very concerned about them at first, but the lymph nodes have not changed in over a year (based on ultrasounds). My husband (who is not a physician) was not concerned at all. He told me when I first found them that I probably had them for a long time but now that I am so skinny I can feel them, and before they were just hidden and I did not know I had them. The radiologist wrote that they were reactive. I was wondering if they were reacting to the MC. Who knows? I think my husband is right with his analysis.
Please keep us posted about your test results. And I hope you will soon find the missing puzzle piece!
Love, Patricia
I am so sorry to hear all of this. I sure hope the Budesonide will work for you!!!
I totally get what you mean about getting in the shower. I was 140# before MC and now I am between 110 and 114# (also 5' 6"). I am grateful that my weight has been very stable for the past 2 years or so, but I am still not used to my skinny body. And it doesn't help that I found several palpable lymph nodes in the groin area on both sides while showering 1.5 years ago. Finding enlarged lymph nodes while losing a ton of weight is not exactly reassuring. I am always afraid I will find more lymph nodes somewhere on my body. My PCP was very concerned about them at first, but the lymph nodes have not changed in over a year (based on ultrasounds). My husband (who is not a physician) was not concerned at all. He told me when I first found them that I probably had them for a long time but now that I am so skinny I can feel them, and before they were just hidden and I did not know I had them. The radiologist wrote that they were reactive. I was wondering if they were reacting to the MC. Who knows? I think my husband is right with his analysis.
Please keep us posted about your test results. And I hope you will soon find the missing puzzle piece!
Love, Patricia
Be gentle with yourself. Be kind to yourself. You may not be perfect, but you are all you’ve got to work with.
- Bhante Gunaratana
- Bhante Gunaratana
Again, thanks for the reassurance Pat. I go back to PCP today for follow up for Time Away From Work. I am going to ask to be released to return to work sometime next week (there is some 3 days waiting/review period..assume that's business days..) because I am starting to become more of a basket case sitting at home. I seem to be ok during the middle of the day (I hate when I say stupid things like that..)..so I think working in a Depends might be ok. I just can't sit around anymore. I have been on the Sandoz cholestyramine at 6 packets a day, and Budesonide for a week an a half now. I am better but definitely not anywhere near normal. Imodium doesn't seem to do much nowadays (always worked in the "old" MC days) and pepto just gave me black WD last time I tried it...
I have been eating a very restricted diet for a year and a half (gf, df, sf for 5 years before that), and since January I have been even more restricted. The last Enterolab test in July of 2016 showed my overall score at 41 with me reacting to EVERYTHING at the 2+ level with rice at 3+. So, there went rice. And of course I reacted to white potato so probably all nightshades. So, sweet potatoes are my starchy food for the past year and a half. I haven't tried any other sort of grain other that a little popped millet in my porridge on occasion. I would love to be able to overeat on rice like alot of the folks here to be able to add more calories. But no. Who knows, I could be reacting to sweet potatoes for all I know. At this point I just look at food like the enemy and sort of laugh at anyone talking mentioning their "safe foods". Really, I have no idea what my safe foods are. I could be reacting to everything that I am eating. And I am not a "cheater" with food. I want a life, any sort of life back.
I hear you about the anxiety. I was probably too "chill" in a prior life. Least anxious person around. But that changed slowly and I attributed it to lots of things like hormone fluctuations/trying to fall over the cliff into menopause, my crazy life situation, low magnesium, etc. My personal life has actually settled down but that hasn't done one thing for the anxiety. I am currently doing acupuncture but haven't seen much improvement yet. Obviously when I am distracted with an activity/chore/walking/working..things are better. I'm so clueless that when I couldn't blame it on hormones or low mag I actually thought that maybe it was whacked out blood sugar levels...I just hadn't dealt with it in my life so had no clue!!! Blood sugar levels were always ok by the way..
Laine
I have been eating a very restricted diet for a year and a half (gf, df, sf for 5 years before that), and since January I have been even more restricted. The last Enterolab test in July of 2016 showed my overall score at 41 with me reacting to EVERYTHING at the 2+ level with rice at 3+. So, there went rice. And of course I reacted to white potato so probably all nightshades. So, sweet potatoes are my starchy food for the past year and a half. I haven't tried any other sort of grain other that a little popped millet in my porridge on occasion. I would love to be able to overeat on rice like alot of the folks here to be able to add more calories. But no. Who knows, I could be reacting to sweet potatoes for all I know. At this point I just look at food like the enemy and sort of laugh at anyone talking mentioning their "safe foods". Really, I have no idea what my safe foods are. I could be reacting to everything that I am eating. And I am not a "cheater" with food. I want a life, any sort of life back.
I hear you about the anxiety. I was probably too "chill" in a prior life. Least anxious person around. But that changed slowly and I attributed it to lots of things like hormone fluctuations/trying to fall over the cliff into menopause, my crazy life situation, low magnesium, etc. My personal life has actually settled down but that hasn't done one thing for the anxiety. I am currently doing acupuncture but haven't seen much improvement yet. Obviously when I am distracted with an activity/chore/walking/working..things are better. I'm so clueless that when I couldn't blame it on hormones or low mag I actually thought that maybe it was whacked out blood sugar levels...I just hadn't dealt with it in my life so had no clue!!! Blood sugar levels were always ok by the way..
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt