Samir's Story
My Experience with Carcinoid Tumours
Samir Haria. Age 27
This all started back in March 2005, and in fact I remember it was a Tuesday evening. I was coming home from work and my stomach felt funny. I assumed it was mainly because I hadn’t eaten very much for lunch so I should get some food inside me.
The next morning I woke up and I was in agonizing pain. I had no idea what was causing it, so I lay in bed for a while and realized it wasn’t going away. I walked over to the walk in clinic across the street and they said it was probably caused by something I ate, and basically sent me home. My girlfriend, Stacey, came over at lunchtime and brought some painkillers and that helped me for the next day or two. However, my stomach wasn’t feeling quite right so I didn’t really eaten much for the rest of the week.
On Friday, Stacey had a big dinner planned and I was looking forward to it. However throughout the evening I kept on waking up because of stomach pains, so early Saturday morning we went back to the walk in to figure out what was wrong.
To note, the main reason I was going to a walk in, instead of a family doctor all this time was because I had just recently moved to Mississauga, and I guess I never realized the importance of getting a family physician as soon as possible.
Anyways doctors at the walk in said I could get blood tests and things done, but the results wouldn’t come for a couple of days. They could see the pain I was in, and said the best thing would go to the local ER and they should be able to diagnose what was happening.
So we went off to the ER and they made my case a priority (which was lucky considering the future wait times I had to deal with) and got a bed within 30 minutes. They did blood work and a CT scan but the final response they came up with was that it was gastroenteritis, and I spent the next 3 nights there.
When I got out, my stomach still didn’t feel right, but I didn’t really know what to do. I was basically in and out of the Emergency room for the next 2 weeks trying to figure out what was wrong. In the meanwhile my weight was dropping rapidly from 145 to 121.
Finally a doctor said I would need to see an internal medicine specialist, and had an appointment to see him in less than a week. That week was brutal though. I was popping painkillers like no tomorrow, but eventually when I saw the doctor he ordered an ultrasound (rather than a CT which I had had two of already) and that’s when the discovered a growth on my small intestine.
They sent me off to surgery and it was removed late that night, and I spent a week recovering in the hospital. My surgeon, when he saw me two days later, said they sent the tissue off for analysis, but it’s a good chance it is Crohns disease. I am in the right age group (I was 25 at the time) and it was located on the intestine. He sent a gastroenterologist to explain it to me further, and what he said sounded very possible to what I had been experiencing.
However, a few days later the test results came in, and we learned that it was actually a Carcinoid Tumour. It was scary to hear because at that age you really don’t expect to have cancer. The doctors were also surprised with that diagnoses because of my age and the rareness of the illness. However they said it wasn’t a big deal and since it’s such a slow moving illness, I can basically live a fairly normal life. They would keep an eye on it by doing some tests every 6 months.
So for the next little while everything was great. I didn’t even think about that illness at all, until October I started getting a funny feeling in my chest. So I went to the ER, where I had to wait a longer time before finally being admitted. But eventually I got another CT scan and the results were a lot worse. The cancer had metastasized to my liver and I had a group of tumours there. We were able to see my oncologist the next day, and he explained what was happening and the treatment options. And we started chemo the very next day.
So for about 6 months I was getting cisplatin and etoposide and I felt a lot better. The tumours had shrunk considerably (the biggest was 9cm and had reduced down to less than 3). However, the tumours had stopped shrinking so I was told it was possible it was just scar tissue remaining. Further, my creatnine levels were getting too high and it was caused by the cisplatin damaging my kidneys so we would definitely need to stop this treatment.
We kept getting CT Scans done every 3 months between March 2006 and March 2007 and it seemed as if the tumours were not changing in size so that reinforced our belief it was just scar tissue.
Then in June 2007, I started experiencing headaches and I was having difficulty reading. The first thing I thought was that I needed to change my glasses, since I had been using the same pair for 4 years, and that it was probably time for an exam. So I got the eye exam and a new pair of glasses but I was still experiencing headaches. I still didn’t think much of it, but I went to the family doctor (I had finally gotten one) who said it was something called TMJ and that anti inflammatories would take care of it. We left for Las Vegas the following week (it was a trip that we had planned for a while) and towards the end of the stay I was really having difficulty reading. So a couple of hours after I returned home, we went to the emergency room, and that’s when I discovered I had cancer in the brain. I got the diagnoses on June 16th.
They put me on steroids to remove some of the swelling that would take care of the headaches and on July 7th, I had the surgery to remove the tumour. After analyzing it, they discovered it was the Carcinoid spreading to my brain. However, after the removal I felt great. When it was discovered that the tumour had spread, we did ultrasounds and CT Scans of my entire abdomen and pelvis area, only to discover that the tumours had started growing once again in my liver.
I wasn’t too worried, especially since the therapy had worked last time and my kidneys were back to normal, so we re started the cisplatin and etoposide combination. However, after 3 sessions, a follow up showed that the drugs were no longer working and the tumours had continued increasing in size. Further I started experiencing headaches where I had the surgery a couple of months earlier.
We discovered that there was an infection under the scalp and on the bone flap, and would be needed to be taken care of immediately. They performed the surgery on October 28th, so I met with my oncologist a week later to discuss the next steps for my chemo treatments. He said that resection or radiation of the liver wouldn’t be possible since there were multiple tumours in the liver and they were occupying both nodes. Further, transplant also wasn’t recommended because since the tumours didn’t originate there and because the drugs required so your body doesn’t reject a new organ actually promotes cancer growth.
He wasn’t sure what types of chemo we should try next so he called the experts in London. They wanted me to see them, so we booked an appointment for November 19th. They first wanted to consider me for this new drug trial they were doing, and if I was not able to participate (or chose not to) they would give me a Xeloda and Temodal combination of oral pills.
I was excited about the trial, but then learnt I didn’t qualify since my cancer had already developed metastases to the brain. I understood, but still was disappointed to hear that. However the doctors in London contacted my oncologist in Mississauga, and told him the dosage for the two drugs. So I am currently taking the Xeloda and Temodal and will be finishing my first cycle soon.
So this is where I am with my fight against this, and I am really hoping that these drugs work. It has been a long challenging battle so far, and I no it’s far from over. I guess I just have to keep fighting. Thanks.
Samir Haria
(Samir passed away on the 7th August 2008)