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Mother has Stage IV 20+ Tumors, Why Sandostatin?

valenciasr
Posts: 2
Joined: Aug 2013

Hello,

 

This past week has been crazy.  We found out that mom has stage IV metastatic liver cancer that came from a neuroendocrine tumor that was removed in 2007.  Here is my question..yesterday the oncologist said that the most effective treatment will be to use Sandostatin.  Out of all of the reseach that I had done in prep for the appt, I read about chemo and tons of other treatments, but NEVER Sandostatin.  In reseaching the meds it seems that they focus on the symptoms only.  Are thye trying to say that shes at the end?  

 

Whatever advice you have would be greatly appreciated!

 

Valencia

northa914
Posts: 89
Joined: Mar 2011

Hi Valencia,

I'm currently being treated for stage IV pancreatic neuroendocrine tumor (liver, lymph node, and bone mets), and am being given monthly shots of Sandostatin LAR.  I also take 10 mgs of Afinitor (Everolimus) per day, which is for advanced stage, unresectable PNET.  The Sandostatin LAR in my case was to stop tumor growth and spread (I didn't suffer from carcinoid syndrome).  Is your mom being treated by an NET specialist?  This is a rare cancer so she should be under the care of an oncologist who is an expert with the disease.  There is a website, carcinoid.org, where you can find a specialist in your area.  It also has a lot of good information that may help you understand this type of cancer.  I am under the care of Dr. Edward Wolin who is with Cedars Sinai/Samuel Oschin Cancer Center in West Los Angeles.  He works in conjunction with my primary oncologist to determine the protocol to use.  My primary oncologist monitors me on a monthly basis, checking to make sure the treatments aren't making a mess of my body (monthly blood tests) and that my tumor markers are either steady or decreasing. I have an MRI/CT scan done every three months, at which time Dr. Wolin decides whether the treatments are working.  My cancer is well-differentiated and considered moderately aggressive (between slow-growing and aggressive).

If you haven't already done so, please get a second opinion from a specialist and maybe a third.  Unfortunately I was misdiagnosed for 2 1/2 years and was chasing the wrong beast.  My second opinion was done by the City of Hope, which shows that even a premier cancer hospital can make a mistake.  I wish you and your mom well, and hope her treatments are successful!

 

 

Andrea

Bill83
Posts: 5
Joined: Aug 2013

Your concern seems well founded to me.  I surfed the web quite a bit and can't see logic of connection of Sandostain to liver cancer.  We've not found much hope in three weeks of looking, maybe Y90 is feasible, but perhaps not for elderly.  We'll keep you and family in our prayers, hope you will do same for us.

northa914
Posts: 89
Joined: Mar 2011

Bill83,

 

You're correct that Sandostatin/Sandostatin LAR are ineffective for liver cancer.  However, if the cancer that's in Valencia's mom's liver is metestatic neuroendocrine carcinoma/tumor, then the growth is not hepatocellular carcinoma and the Sandostatin drugs may be effective in controlling and possibly shrinking her tumors.  I have neuroendocrine tumor of pancreatic origin which has metatstasized to my liver, bones, and lymph nodes.  Though it exists in my pancreas and liver, my treatments are not those that would be dispensed for liver cancer (hepatocellular carcinoma) or pancreatic cancer.  I have been treated with transarterial chemoembolization (TACE) for my liver mets, and Y90 and RFA are options we may use in the future should the liver mets continue to grow as all of these procedure can be effective for NET that exists in the liver (they can also be effective against other types of metastatic diseases, including primary liver cancer).  Valencia's mom needs to see a neuroendocrine specialist if she ahsn't already, and ask for an octreoscan or any other type of scan that can assist with determining if her mom's liver mets are of neuroendocrine origin and not a new type of cancer. 

I hope you are able to find treatments and procedures that are successful in your fight.  I'll keep you and your family in my thoughts and prayers!

 

Andrea

 

valenciasr
Posts: 2
Joined: Aug 2013

Bill  & Andrea THANK YOU BOTH SO MUCH!

Today mom is getting an MRI of the brain and an octreotide scan...I'm looking for a specialist and I'm sure with Duke & Chapel Hill being so close I will have luck!

 

Thank you both for the prayers and I will keep you both in my prayers as well!  

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