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Neuroendocrine carcinoma

Clbt102
Posts: 3
Joined: Jun 2013

Hello there,

my name is carrie, I am 46 and have a six year old son. I was just recently dx'ed with neuroendocrine carcinoma. I have a tumor in my axilary lymph node. They cannot find cancer anywhere else. All of my scans are clear. Like everyone on this board, I am beyond scared. I am currently on cisplatin/etopside and radiation. Has anyone else heard of a case like mine, I cannot find anyone else like me in the Internet. I am seeing Dr Shah at the James in Columbus, ohio.

 

prayers to all

carrie

northa914
Posts: 89
Joined: Mar 2011

Unlike you , I do know where my NET originated from, but my circumstances may give you some support.  I was originally diagnosed with stage IV cholangiocarcinoma in June 2010, and rediagnosed with Stage IV PNET in January 2013.  During an attempted resection for the CC in my liver (performed in May 2012), lymphnode metastasis was discovered with NET.  My oncologists decided to proceed as if I had two rare forms of cancer, and put me through nine rounds of FOLFIRINOX from August through December 2012.  My sister insisted that I have an Octreoscan in October 2012, which showed that all of my tumors had the octrotide receptors.  The PNET was confirmed by Dr. Edward Wolin with Cedars Sinai in Los Angeles.  Has Dr. Shah suggested an Octroscan for you, or have you already had one done?  I have two tumor markers that my oncologists monitor: CA 19-9 for the pancreatic lesion as that is the site of origin, and Chromogranin A for the NET.  I'm currently receiving Sandostatin LAR, and will begin Everolimus at the end of this month.  I know there are different forms of NET that require different treatments.  Mine is based on the fact that I have well-differentiated, slow growing tumors.  If your doctor hasn't already directed you to this website, carcinoid.org has some good info.  I looked up your doctor, and she is listed on the site as being a specialist in neuroendocrine carcinoma, which is what you need for this rare cancer. 

I hope this helps.  Keep your chin up!  I'm 51 and have two boys (12 and a soon-to-be 15 year old), and refuse to give up as I want to be around when they have children of their own. 

Andrea

Clbt102
Posts: 3
Joined: Jun 2013

Hi! Thanks for responding. I am sorry it has taken me so long to reply.. I have not had a ostroscan as of yet. I am flying to MD Anderson for the week of August 26 for a second opinion. I am seeing dr. James Yao. I've had ct scans and pet scans with no other cancer seen other than what is in the one lymph node in my armpit. I am hoping that dr. Yao will do the ostroscan or the new gallium 68 scan. how do you handle the fear and anxiety of what may happen to you? I am a very strong person, am a believer in God and am pretty positive. But I have a current of anxiety that runs through me. I am a psychologist and know that I have mild generalized anxiety disorder and have been on SSRIs for a long time. I quit taking the lexapro when dx'ed. I am thinking of going back on them but am worried about the effects of increased serotonin on cancer/tumor cells. Does the disbelieve and shock ever go away?

 

I too refuse to give up!! Good luck to you!

 

carrie

northa914
Posts: 89
Joined: Mar 2011

I have to admit that not every day is easy, but most days are really good!  I keep myself occupied with my two sons' activites, take care of our pets, hang out with my OAO (One and Only, at my age "boyfriend" sounds a bit silly), basically I live my life as if I don't have cancer but treat my body like it does.  You may want to consult with Dr. Shah about the Lexapro.  One of the specific questions I'm asked during my monthly visits with my oncologist is "Are you feeling any anxiety or are you feeling depressed?".  She made it clear that should I feel overwhelmed by either of those feelings that she could prescribe something to help.  Suffering from anxiety and/or depression after a cancer diagnosis is quite common, so if the Lexapro helps you stay positive then you may want to rethink your decision to stop taking it.  The disbelief and shock don't completely go away, and some days I have an absolute melt down (always when I'm alone and never in front of my children).  Afterwards I feel so much better and am able to carry on.  As time progressed, the meltdowns became less frequent, in fact I can't remember the last time I had one. You are in good hands with Dr.s Shah and Yao.  They are both specialists with neuroendorine carcinoma.  It must be so daunting to not know the origin of the growth in your lymph node.  You may find some comfort once you have a clearer diagnosis and a treatment path.  Remember that even if both specialists concur, always ask questions and be your own advocate.  I thank God for my sister, who took the reigns and did tons of research.  Without her I probably wouldn't be around today.  She's the one who suggested TACE to my first oncologist (I had to switch mid-stream, it's a long story), of which I've had four performed at USC-Norris in Los Angeles (I love my specialist there, Dr. Daniels), and suggested the octreoscan to my present oncologist when NET was discovered in my lymph nodes after an attempted liver resection.  She also found Dr. Wolin with Cedar Sinai, who now serves as my PNET specialist.  Im currently taking Afinitor 10mg, and get monthly injections of Sandostatin LAR and Xgeva (for bone issues caused by the bone metastasis).  These treatments are based on my PNET being a well-differentiated, moderately growing cancer.

 

I wish you the best, and hope that your consultation with Dr. Yao gives you insight and relief (ya, I know, sounds strange when it comes to cancer, but not knowing is worse!).  If you would like to reach me, please send a private message through this website (I get an email prompt that someone is trying to contact me).  I'll be sending positive thoughts your way, and you will be in my prayers.  Please let me know if there's any support I can give you!  Smile

 

Andrea

Marynb
Posts: 1134
Joined: Aug 2012

Hi Andrea,

I also have had a NET that was surgically removed. It was in my ileum and had spread to lymph nodes. I am not being treated with Sandostatin and I am wondering what led to the decision to be treated with it? Is this a short term treatment or will you remain on this for life? Also, what are the side effects. It is my understanding, based on research, that there are no known antiproliferatipn drugs to treat neuroendocrine carcinoma. I have no real symptoms at this time. Is the drug given to treat symptoms. Thanks for any input.

jhtesq's picture
jhtesq
Posts: 9
Joined: Mar 2013

Carrie....give that cancer hell !

I am rooting for you !

Hope to hear good things from you soon.

northa914
Posts: 89
Joined: Mar 2011

Per my specialist, Sandostatin/Sandostatin LAR have been shown to possibly increase progression-free survival and possibly shrink certain NETs, those of mid-gut origin in particular.  My current treatment consists of a monthly injection of Sandostatin LAR, 10 mg of Afinitor (Everolimus) daily, and a monthly injection of Xgeva (a bone strengthener to lessen the risk of fracture due to bone mets).  I don’t suffer from carcinoid syndrome, which Sandostatin and the LAR version are also used to treat.  Are you currently seeing an NET specialist?  I was fortunate enough to have one only an hour away from where I live (assuming there is no traffic, which in the Los Angeles/Orange County area is almost never).  Since this is such a rare cancer, being under the care of a specialist is of paramount importance.  My NET specialist consults with my primary oncologist, who takes care of the monthly monitoring and dispensing of my treatments.  My specialist monitors my progress every three months (CT and MRI scans) and then decides whether or not to change my treatment path.  I’ve been on Sandostatin LAR since February 2013 and started Afinitor about eight weeks ago.  My 1st scan since starting this combination is towards the end of this month.  So far my Chromogranin A tumor marker has gone from a high of 48 to 16.  What we’re looking to do is get me as close to remission as possible.  The Sandostatin LAR caused no side effects for me, and the Afinitor is a walk in the park compared to cytotoxic chemo.  I didn’t realize how crappy I felt until I was off of the really bad stuff I was being given for 2 ½ years. 

 

I hope this helps.  I will keep you in my thoughts and prayers!

 

Marynb
Posts: 1134
Joined: Aug 2012

Thanks for the response. I had midgut NET with spread to lymph nodes. Resection done in 2011. I have been to a NET specialist and have been told there is no evidence that Sandostatin increases survival, and may even shorten life. My research on this leads me nowhere at all. I can find no studies that suggest there is a benefit. Have you? Right now, I am awaiting results of new scan of possible mets to lungs. This is really a nightmare that I want to wake up from.

Does health insurance pay for the Sandostatin?

northa914
Posts: 89
Joined: Mar 2011

I'm assuming you have well-differentiated NET as well?  My NET specialist is Dr. Edward Wolin who practices at Cedars Sinai in West Los Angeles.  He directed me to a website, carcinoid.org, that has some good information regarding NETs.  It also has a list of specialists, ordered by state.  Perhaps a second opinion by another specialist in your area would be a good idea; also look to see if your psecialist is listed on the carcinoid.org website.  Below is a link to an article regarding a study done regarding Sandostatin LAR and the finding that it has anti-tumor properties.  Perhaps your specialist's statement relates to your particular type of NET?  This study only included patients with well-differentiated metastatic midgut tumors.  I know it's very frustrating trying to find information regarding this disease because it is so rare.  Are you having an octreoscan or another NET-specific type of scan, or is it a CT/MRI?

My health insurance (Blue Shield of California PPO) does pay for Sandostatin/Sandostatin LAR since it's listed as an approved treatment for NET.  Otherwise it's about $2000 per shot.  I hope I've made sense and that this helps!  I'm relatively new to this disease having been diagnosed in January 2013 so I most of what I know is from information from the caricinoid website, Dr. Wolin, and our favorite Dr. Google  Laughing

 

http://www.redorbit.com/news/health/1622737/new_study_first_to_confirm_sandostatin_larr_depot_controls_tumor/

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