Carcinoid spread to brain?

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Carcinoid spread to brain?

by Joolsn on Wed Jun 01, 2011 10:45 PM

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Hello! I was hoping someone might be able to offer some information. My mother was diagnosed with carcinoid 3 years ago. She has an operation to remove most of her small and large bowel. After op they completed an octreotide scan and found a small small tumor in a lymph node by the liver. Since then her chromogranin a has risen each time. This time it was 169. Which, for her, had gone up quite a bit. She is also feeling very poorly- all symptoms if syndrome. Today they started her on a course of octreotide. However, her local GP noticed her droopy eyes and she is having a feeling of cramping in her head, dizziness and focus problems so they want to send her for a scan of her brain. They said it is unlikely to have spread but they need to check. I can't find any info on carcinoid spreading to the brain. Does anyone know where I might look??

RE: Carcinoid spread to brain?

by Jenholm25 on Wed Jun 01, 2011 11:24 PM

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Have them give her a blood glucose test kit.  80% of carcinoid cancer patients who have carcinoid syndrome develop type 2 diabetes.  Often times this is preceeded by pre-diabetes which can cause extreme lows and highs in blood sugar.  This can also cause similar symptoms which may be hard for docs to catch.  Having her test her blood sugar several times throughout the day for a couple days can giver her a much clearer idea as to what is going on.

I'm not saying she doesn't have mets to her brain, just that if they don't find anything - this could be a place to look next.

Try internet searches on "carcinoid syndrome" and "pancreatic insufficiency" or "diabetes". 

Keep us posted!

Thanks,

Jen

RE: Carcinoid spread to brain?

by Katsen57 on Thu Jul 07, 2011 01:41 AM

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Dear joolsn, I have one correction that is important to note. It is not carcinoid that causes the diabetes. It is the Sandostatin that MAY cause diabetes in a person who is pre-disposed to diabetes. I occassionaly have trouble with my hemaglobin and become borderline anemic. I've gotten Iron infusions for it.  I would get the shakes or weakness and have to eat something right away or I would feel like I was going to pass out. My Onc says its my Hemaglobin. FYI, I have heard of Carcinoid found in the brain, skin, bone, anywhere really. But never worry about getting a second oponion about this disease. There are only a few really well versed Dr.s that can Diagnose, monitor and care for this disease properly and you should never fear Hurting your Dr.s feelings about this. If they are worth their weight  they would cooperate and work with other Dr.s. This disease is so complicated not to seek out everything you can to treat this disease. I would also look into having your mother see a cardiologist. Large doses of Seritonin can damage your heart valves. I go to Dr. Zacks in NYC, He works with Dr. Warner @ Mt. Sinai Hospital on Madison Ave. and 98th street. I wish you all the best to you and your mother. Katsen57

RE: Carcinoid spread to brain?

by Katsen57 on Thu Jul 07, 2011 01:47 AM

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Dear joolsn, I have one correction that is important to note. It is not carcinoid that causes the diabetes. It is the Sandostatin that MAY cause diabetes in a person who is pre-disposed to diabetes. I occassionaly have trouble with my hemaglobin and become borderline anemic. I've gotten Iron infusions for it.  I would get the shakes or weakness and have to eat something right away or I would feel like I was going to pass out. My Onc says its my Hemaglobin. FYI, I have heard of Carcinoid found in the brain, skin, bone, anywhere really. But never worry about getting a second oponion about this disease. There are only a few really well versed Dr.s that can Diagnose, monitor and care for this disease properly and you should never fear Hurting your Dr.s feelings about this. If they are worth their weight  they would cooperate and work with other Dr.s. This disease is so complicated not to seek out everything you can to treat this disease. I would also look into having your mother see a cardiologist. Large doses of Seritonin can damage your heart valves. I go to Dr. Zacks in NYC, He works with Dr. Warner @ Mt. Sinai Hospital on Madison Ave. and 98th street. I wish you all the best to you and your mother. Katsen57

RE: Carcinoid spread to brain?

by nwfla on Mon Jul 11, 2011 12:47 AM

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Could you please tell more detail what you mean by "cramping in the head" and "focus problems?" I had some strange sensations after two sando LAR shots and wonder if they were similar. The sensations increased in frequency and intensity for two further months, until my dr suspended use of sando, then they slowly diminished and have almost disappeared. Neither dr. nor drug rep said anyone had ever reported similar sensations with sandostation LAR.

RE: Carcinoid spread to brain?

by Joolsn on Mon Jul 11, 2011 08:40 AM

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On Jul 11, 2011 12:47 AM nwfla wrote:

Could you please tell more detail what you mean by "cramping in the head" and "focus problems?" I had some strange sensations after two sando LAR shots and wonder if they were similar. The sensations increased in frequency and intensity for two further months, until my dr suspended use of sando, then they slowly diminished and have almost disappeared. Neither dr. nor drug rep said anyone had ever reported similar sensations with sandostation LAR.

Hello! The treatment didnt work for mum. She had to stop having the injections as she reacted badly to them. They are now looking at using mibg. We are awaiting the migb scan results. The cramping in her head and ability to focus got so bad we took her to the hospital and they too noticed that her eyes are droopy and speech slurred. They did an MRI which was clear so they are confident she has myasthenia gravis. I am not sure if the two (crcinoid an mg) are linked or mum is just unlucky to get 2 very rare health issues.

RE: Carcinoid spread to brain?

by Windymoose50 on Fri Oct 14, 2011 06:54 PM

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Hi Joolsn,

I am 59, almost 60 and I am unlucky enough to get weird and rare things.  I sympathize with your Mom.  I was tired of being treated like I was crazy and then when the carcinoid in my small intestine was found finally I was no longed judged for my weird symptoms.  Gayle

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