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Old 01-21-2011, 04:14 PM   #1
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Neuroendocrine Tumor

My husband has been diagnosed with Neuroendocrine cancer. It was first caught in November by accident, during a routing physical. His Liver was swollen, and after a sonogram, found to have several liesions. After an Otreocide Scan, he has been found to have a small (2.1 cm) tumor on the left lung. All blood work and other tests are normal. He has no symptoms, and is not sick.

They started him on Sandostatin, once a month, just a few weeks ago. I have read everything I can, and I still have questions:

1. As sandostatin retards the growth hormone, why can I not find any side effects about having less growth hormone? Will he age faster? Will his organs eventually give out? What effects, other than upset stomache and diabetes issues are there? Growth hormones have great effects on aging, so why wouldn't less of them have a rapid aging effect?

2. Everything I have read about Sandostatin is that it treats the symptoms, but my husband doesn't HAVE any symptoms! Doctor says it retards the growth of the tumor. Really? I cannot find ANYTHING on that possible use!

3. Although it is small, it has metastisized in his liver. Does this automatically make it stage 4? Also, I cannot get a straight answer on the survival rates. Some say 2 - 5 years, others 20 or more. What is realistic? Does the fact that it is in the liver reduce the life expectancy? or, since it is so small, should we not worry?

4. Can Sandostatin really keep it at bay for many years? What about the liver? It is all over his liver. What is the prognosis for that? Does Sandostatin stop those tumors, too? Or just the primary?


Someone, please help! I don't know what to believe!

Last edited by kmbenedetto; 01-21-2011 at 04:14 PM.

 
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Old 03-31-2011, 10:14 PM   #2
DBT DBT is offline
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Re: Neuroendocrine Tumor

my mom was just diagnosed, and it is very similiar to your husband. have your quetions been answered. has the medicine helped
hope he is doing well and to hear from you

 
Old 04-01-2011, 04:54 AM   #3
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Re: Neuroendocrine Tumor

Quote:
Originally Posted by DBT View Post
my mom was just diagnosed, and it is very similiar to your husband. have your quetions been answered. has the medicine helped
hope he is doing well and to hear from you
So far, so good. He still has no symptoms from the tumor. the Sandostatin does give him some stomach cramps occasionally, but that is all. He has been on the VERY expensive injections for 3 months now, and his hormone count (the hormones released from the tumor) are down! YEA! He goes in for another CT scan this month so they can measure the tumors on his lung and liver. Hopefully, they have shrunk a bit!

We sent all of his images and tests to a couple of other doctors, and all agree this is the best course of action. Sandostatin is least invasive with the least side-effects, so we hope this works. If not, there are other drugs, but they have more side effects.

I have done tons of research and asked lots of questions, so if you have any, I'll be happy to share what I know.

Hope your mother is doing well. Take care.

 
Old 04-01-2011, 08:15 AM   #4
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Re: Neuroendocrine Tumor

Im really happy to hear he is doing very well without any symptons. Thanks for answering back , and for sur Ill be be asking questions. First Ill hear what the oncolist has to say, our first appointment is this saturday. Mother is 82 but feeling good and optimistic.
regards

 
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