Carcinoid of the Liver and Stomach

Please read, and agree to, the Agreement Announcement prior to posting your personal story.

Carcinoid of the Liver and Stomach

Postby Lunadawn » Fri May 06, 2016 10:38 am

I'm not quite sure where to begin, but I'll begin start with when I felt changes within my body. I have always been a heavy person who struggled with my weight since I was 10. So in 2011 I was turning 30 and I was determined to lose the weight for my 100th time. I did begin to notice I was more tired then usal but just brushed it off due to my diet change. Around this time started having bad acid reflux and began taking medicine for relief. I began watching what I ate to avoid my reflux. Then I had my first stomach episode, this is the only way I describe it so other non carcinoid can comprehend the feeling. I thought my stomach episode was a case of food poisoning, it was a mild cramp which later got worse, they were debilitating bloating adominal cramps. It felt like a knot which would start from the top and work it's way through the intestine. This would usually last a day or two and it would end with me vomiting or having explosive diarrhea. My doctors would just tell me watch what you eat, lose weight, just a case of IBS along with reflux. So i began to eliminate anything acidic, and anything that would cause reflux.
In 2012 my coworker notice that after I lunch my skin got blotchy, it felt like I was blushing and was warmer than usal. I didn't think much of it because I am over weight and do sweat easily. My energy level was depleting, and I just thought it was from all my dieting. But my episode kept occurring which eventually cost me my job due to many days taken off. It was embarrassing enough some days I went to work when I had the runs but I couldn't function with my stomach pains.
In 2013 I acept the fact I lost my ideal job, but had a new out look because I became a new home owner. In the moving process I was getting increasingly tired and I just kept on pushing to fix up my new place. Shortly after my 32 birthday I got another episode and this time it left me in bed for 3 days, my mother at this point was concerned because I just could get out of bed. She then took me to the doctor to see what was wrong with me. Thinking it was due to my weight she had me test for high blood pressure, diabetes, cholesterol etc. Everything came up negative and I was told it was a bug and my IBS and reflux issue. I was told to get more lab work and to see someone in the hospital, my mom took me staight to the emergency room. With another round of test the doctor there wanted a xray. There he notice spots on my liver tons of them, he didn't tell me but I knew it was bad. I spent six days of constant blood work, monitoring my heart due to rapid beating, IV put in me due to all the diarrhea I had. A biopsy of the liver was taken and I was released from the hospital with them saying I had cancer and they will call me and let me know what kind. I followed up with the hospital oncologist which who had began to tell me I had 10 yrs to live. But don't worry its something I have for awhile it's a slow growing cancer so I still had time. In shock because I was only 32 and give 10 yrs to live, and told just to go home. By then I had lost 50 lbs I still occasionally had diarrhea and I was given nothing to begin treatment. By then I became depressed sent home to die I just shut down.
My family began to do there research and took me for a second opinion, and and a third. By then i began recieving dayly injections in my stomach, which help my diarrhea situation. I was told to gert scans done to see the extent of my tumors and all the locations. On that day i met a nurse who was curious on my condition, and i told her how this oncologists had given me 10 yrs and that I need to find someone else because I haven't found a doctor who wants to treat me. All the other doctors said my liver wouldn't operable, and to go home. She gave me a flyer that happened to be giving a seminar on carcinoid, and it was the best thing I ever done. I went I was sick as hell but I met with a doctor who review my scans and gave me the news I wanted to hear. He can treat my symptoms and my liver is operable, at last I has hope. I began treatment and my symptoms began to go away, my diarrhea went, my asthma went, my energy was coming back, my hot flashes were going away. I started to feel like myself again, it took me a few months to regain my strength but I was hopeful. I didn't have to except that I was given just 10 yrs to live, I get my life back.
My current situation, I still stuggle with my weight, but if I lose weight it done with proper diet not from my condition. I still have to avoid certain foods so I don't get a episode, which happens less often. My energy is ok some days worse then others, but a little nap helps. Now I don't know if it's just me but I have mood swings, and I can't help myself. My goal is to hopefully meet someone with my condition and compare notes. It's difficult to explain how I feel to others when there are days you feel like crap. So please feel free to reach out I know I will be looking.
Posts: 1
Joined: Wed May 04, 2016 10:08 pm
Location: Washington, New Jersey
Cancer Diagnosis: carcinoid
Relationship To Patient: Self

Return to Submit Your Personal Story - ** Publicly Viewable **

Who is online

Users browsing this forum: No registered users and 1 guest