Treatments for Carcinoids

Actually, Teresa, the flushing and diarrhea are not symptoms of carcinoid, they are symptoms of carcinoid SYNDROME which only between 10-15 percent of patients with carcinoid cancer have. That is one reason that the diagnosis can be initially missed. ... if we all wait for flushing, it might be too late.

Thanks, @wordnoid, I did not realize the difference. I take it that the nausea is a symptom of the carcinoid?

Hi all: @tresjur @gaylejean @gulzar @joannem @joanney @amyh2439 @lucci50 @derekd @lorettanebraska @wordnoid. It has been a while since any of our NET (carcinoid) folks have posted. How are you all doing? Any changes in treatments or symptoms that you might like to discuss?

I've been extremely busy these last few weeks and have not even read any posts or new articles on this site or anywhere else.
Not that I'm not interested, but most of my current time has been dealing with Thanksgiving, out-of-town visitors, a recent
family death and I hosed my car pretty badly last Sunday and it looks like it might get totalled, and lastly preparing to leave for a cruise
on Monday. So, as typically me, I deal with right is before me at the time and put myself last. All is well with me, though -- carcinoid progression is stable, no new problems, symptoms or treatments for me at this time. I hope all had a wonderful Thanksgiving and looking forward to the upcoming holiday festivities.

@tresjur Thanks for the update! It was good to hear from you. I'm sorry to hear of the death in your family and the car accident. However, the cruse no doubt gives you something to look forward to and that is great! I'm also glad to hear that your carcinoid progression is stable. Perhaps we will hear from @gulzar @joannem @joanney @amyh2439 @lucci50 @derekd @lorettanebraska @wordnoid soon and get their updates as well.

I'm here. Nothing new to report. Will be getting nervous soon as next scan is due in January. I heard that the sando shots can cause teeth problem causing your teeth to become brittle. Anyone have any personal problems with that issue?

@joannem Thanks for checking in with us, nice to hear from you! I'll be thinking about you in January. Keep us posted, if you will, and let us know how it goes. Regarding the sando shots and teeth problems, let's see what our other folks know about it. @tresjur @gaylejean @gulzar @joanney @amyh2439 @lucci50 @derekd @lorettanebraska @wordnoid, if you have had the sando injections let us know if you have had any dental problems related to that medication.

I have had Sandostatin shots once a month since October 2008. I had a root canal a couple of years ago but doubt it was from the injections.<br>

Hi @gaylejean Thanks for your response, sorry to hear about the root canal. We appreciate your input.

I was diagnosed with Carcinoid Cancer with Carcinoid Syndrome in 2003. By that time I was down to about 105 lbs, wore a size 5, (normal size was 10), and felt like I was what I called a member of the 'walking dying humans'. Fortunately my Onco kept trying to discover 'what cancer I had'. I had been to 2 very large & excellent hospitals leaving without a confirmed diagnosis. Both of them thought I had 'a cancer' but had no idea what type or where. Of course all the medical centers were centering around my genetic predisposition cancers, colon, pancreatic, and ovarian. All these tests were of course negative.

My Blue Cross/Blue Shield stop paying for any further testing. My Onco (who was convinced I had a 'cancer', told me there was 1 more test, a nuclear one in a location not far from where I lived and it was expensive. My husband & I agreed to do the test, knowing the costs, as a 'last chance' effort

When the appointment for the 'test results's arrived we met with my oncologist. He pulled his rolling stool close to my chair, held my hands, and looking eye to eye told me the test showed NOTHING WRONG!
Fortunately my body showed it's reaction by giving me a horrendous flushing episode! The doctor hugged me and said, 'I know what it is!!!! I can't believe it's this one and don't worry .... we have a world expert at EVMS in this type of cancer!
The doctor's name was Vinik and yes, he was an expert in that field, along with diabetes management. As it turned out, an extremely wealthy man had severe diabetes & had traveled everywhere to find someone who could help him. He had found Dr. Vinik, a South African native, doing a diabetes research partnership with Michigan University.
He relocated to Norfolk, Virginia thankfully for me! My Onco knew him & immediately got him on the phone to get my appointment. The rest is history.

Yes I still have Carcinoid Syndrome. However this doctor after my first meeting schedule a procedure with an interventional radiologist. He wanted my liver checked out where this doctor found & destroyed 3 sizable carcinoid tumors.

Unfortunately for me, I have an unknown primary. So technically unless it is found, I will stay on Sandostatin injections forever. But that is okay. I still have flushing, burst facial blood vessels, and I am only aware of my flushing if I put my hand to my face, pass a mirror, etc. The only place I can feel my flush is down my chest and on my back. I still have to go for injections every two weeks but that is a very small price to pay for waking up every day. And yes I still have multiple bowel movements per day, primary loose & weirdly formed, but hey .... I wake up!

That's our goal! Staying alive! If we live ..... we can handle mostly anything, someway, somehow .... If you have questions, maybe you can find a carcinoid support group near you or online. The Carcinoid Cancer Foundation, based in New York State, is a great resource. If you phone them, just ask for Grace. She is very helpful! Their web site also list other resources. They also have a list of all the best Carcinoid Cancer locations basically in the free world on their website.

Wishing you ALL the VERY BEST!