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carcinoid

kackle
Posts: 4
Joined: Nov 2009

I was diagnosed with carcinoid cancer 11/2007. I had been having symptoms for years, but no one could figure out what was wrong. Finally on Thanksgiving Day I went to the ER where they ran yet more tests. That's when they finally found the tumor. They removed the tumor along with 80% of my small intestine. The tumor had grown around several loops of my intestines and basically squeezed it shut so nothing could pass through. My oncologist said it had probably been growing undetected for years and is a very slow growing cancer, and rare. We continue to monitor with scans and lab work. Although all margins were clear, the cancer is still wandering around in me somewhere. He likened it to "little seeds floating around looking for each other". So far they haven't been able to find each other. I was started on Sandostatin LAR, 20mg in May and it has helped with carcinoid syndrome. However, in the past month, I have lost weight without changing my diet or exercise regimen. I eat all the time, and intentionally go for the desserts/candy/junk food. My muscles are sore for no reason, and I feel tired by the end of the afternoon. Is there anyone taking monthly injections of Sandostatin and experiencing any of these symptoms? I'd love to hear from you. I have my next appointment with my oncologist in December and will ask him about it. Happy Thanksgiving!

Cyndel's picture
Cyndel
Posts: 3
Joined: Jan 2010

Hi Kackle,
Diagnosed with carcinoid in Oct 09....on octreotide now,but going on Sandostatin in about another week and half. Having surgery 1/21/10.would like to keep in touch. How was your recovery?Who was your Dr?

kackle
Posts: 4
Joined: Nov 2009

Hi, Cyndel
Sorry I'm so long getting back to you- I haven't checked the board in a while. By now you have had your surgery- hope it all went well. I live in Kansas, my surgery was in Wichita, Dr. Whitney VinZant, and my oncologist, Dr. Eric Carlson, is in Manhattan. I'm due for my 6-mo. scan March 1st and meet with the dr. on the 11th. My weight has continued to fluctuate, but thankfully I haven't lost any more. I've been thin all my life and don't really have much to lose, but have been maintaining now between 115-118#.

Different 'symptoms' come and go and you always wonder if it's the cancer sneaking up on you or if it's just some random thing. When I was experiencing all my health problems and trying to get a diagnosis, I never in a million years even considered the possibility I had cancer! To this day, it seems surreal, like they got it all wrong. I know they didn't, but mentally it's hard to get your head around. I guess if I'd had to go through chemo and/or radiation, it would have seemed more real... From everything I've read, chemo/radiation can't cure this type of cancer. European studies show the Sandostatin slows and in some cases stops the growth of these tumors. Although I don't have any masses, they are potentially there so my dr. wanted me on Sandostatin to hopefully stop the progression before it got started.

I do really well at staying positive about my health, and have always been an active person and paid attention to diet. However, as the scan times get closer, the doubt and wondering start creeping in. I'm sure that's a natural thing, but it kinda sucks to live your life on a roller-coaster that every 6-mo. climbs to the top of the hill... I just have to remember it can't stay at the top forever and will scream it's way back to the bottom and everything will be okay again!

If there's any thing I can do for you or answer any questions, here is my personal email address. Feel free to contact me that way if you want. Take care, and stay strong!

A fellow survivor,
Kelly
hkgaston@tctelco.net

sdusenbe
Posts: 2
Joined: Feb 2010

I was diagnosed in 1992 with my first carcinoid of the lung, during the next 10 years it spread to my liver, stomach, thyroid and back to my lung. In the beginning I did not notice any sydrome but about three years ago I started getting the "symptons" and was put on Sandostatin, which I was doing daily injections. I was so miserable taking the Sandostatin, that I finally called indicating i would rather have the syndrom symptons then the side effects of Sandostatin. These side effects were nausea, vomiting, weight loss as I explained to my husban, it felt like it was the flu that would not go away. Even though I'm 10 years with no tumors, I continually worry that it would show in my intestines as all I've read indicates that is the norm to find it. keep positive.

kackle
Posts: 4
Joined: Nov 2009

Hi, sdusenbe,

Thanks for posting! I never had any of the symptoms consistent with carcinoid prior to diagnosis- no diarrhea, flushing, nothing like that. Mine were abdominal cramps that were as intense, or more so, as labor during childbirth. I would literally wad up in a ball for sometimes hours in extreme pain. After the diagnosis and removal of the tumor, I've had diarrhea problems and maybe occasional flushing. I figured it was due to the lack of small intestine. The sandostatin has definitely helped that problem and I've not experienced any of the side effects you are having. I'm sorry your body didn't take to the Sandostatin. Did your doctor allow you to discontinue the injections? If so, are you trying anything different? I don't know what else is available for survivors like us. My oncologist told me a breakthrough is coming very soon for a chemo treatment that will actually kill carcinoid so I'm patiently waiting, and jumping through the hoops to keep me as healthy and safe as possible! Stay strong!

A fellow survivor,
Kelly

mr steve
Posts: 286
Joined: Sep 2009

Kelly,

Can you say anything more about this breakthrough? My wife is currently getting treatment now and I would like to be able to follow up with her Onc.

Steve

kackle
Posts: 4
Joined: Nov 2009

Steve,

I can't really tell you much about the new treatment. My oncologist said he's been visiting with some colleagues at MD Anderson and they felt a new treatment would be available in the next 2-3 years. I know that seems like a long way off, but if the cancer hasn't metastasized and because carcinoid is such a slow growing cancer, I'm comfortable with the wait. I know the Sandostatin has been tested in Europe and good things have been discovered about it so I will continue on it as long as necessary.

Knowledge is power so I keep searching. I hope this helps you, and please let me know if your wife's oncologist can give you more info. Stay Strong!

Kelly

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