Where I’ve Been
I have a page in the top menu titled My Carcinoid Cancer Story but I wanted post my carcinoid cancer story update to let everyone know my current plan. As you know, it looks like chemo is not working on my carcinoid tumors. I knew this was a possibility. Often chemo and radiation, which are the standard treatment for most cancers, does not work on carcinoid tumors. Also, I have been told that surgery is not an option because of the amount my cancer has spread and the volume. That is why my oncologist suggested a systematic approach which was why he suggested we try chemo So far, I have been on Xeloda, Xeloda and Temodar and also Afinitor. Afinitor caused mouth sores so I am on a short break from that but we might try it again at a lower dose. Before that I was given to shots of Sandostatin by a different doctor and was told that Sandostatin was not working for me.
My cancer journey has been fairly complicated. I was “blind sided” by my diagnosis. It was like a nuclear bomb went off in my life. We ended up selling our house, moving 6 or 7 times in one year, had job loss and, because of all of this, I had a number of different doctors. Too many doctors. Looking back, I have learned quite a bit the hard way and now I’m hoping my path will be a bit easier.
I was working in North Carolina trying to relocate my family from New York. I landed a great job but soon afterward my diagnosis of cancer came through. It was quite a rough time. My family was still in New York and I was alone.
So, I started jetting back and forth between New York and North Carolina to get scans and tests. I was referred to a doctor for a consultation in New York, he knew nothing about my cancer but tried to pressure me into immediate surgery. This was a renowned university based cancer center and I expected more. I walked out. You can read more of that encounter here.
I was still living in New York and I started seeing a doctor in North Carolina at another renowned university based cancer hospital. He told me that I probably had 10 years to live and that there was nothing I could do. No hope. Later, after getting my scans, he told me I had 5 years and still had no chance to live longer. He walked out of the room and never looked back. Either did I….and, believe it or not, I ended up going back to New York again.
New York (Again)
I was separated from my family, living alone and dealing with a new job and cancer and bad doctors. My wife talked me into quiting and returning to New York. Believe me, it wasn’t easy for me to do but it was the right choice. We were all together again.
I left North Carolina with nothing more than a recommendation for Sandostatin and words echoing in my mind that I should wait to die. Well, I returned to New York again and I did get Sandostatin shots but I wasn’t going to wait to die. I was, and still am, a fighter.
I started seeing a new doctor in New York City. Again, a renowned hospital and I was told that they were able to help. To sum up my experience there, I was being seen by a very nice doctor but, she didn’t know anything about carcinoid cancer. I got 2 shots of Sandostatin and was told that it wasn’t working and she wanted me to have a port installed and she was recommending chemo. Before I started chemo I decided that I wanted to see a carcinoid specialist. Lucky for me there was one in New York. As it turns out, my doctor didn’t like that and referred me to a clinic on Long Island that would administer the shots. So, now I would have NO doctor. Why? Because I sought a second opinion. I was so disappointed.
The New York Carcinoid Specialist
I chose to seek a specialist and found one in New York. He seemed great. Again, a renowned hospital and a well known specialist in carcinoid cancer. I waited hours in the waiting room. It was at least 3 maybe 4 hours. I had no breakfast or lunch and was getting dizzy from lack of food. It was ridiculous. Still I held out hope that he would be good. The wait would be worth it I thought. Any how, he was a specialist.
I was finally brought into the office and I waited another 20 minutes. Yes, I am not exaggerating. Sadly. Finally, the doctor saw me. He seemed great! He gave me a “Pep Talk”. Told me NOT to wait and see and NOT to wait to die. He said that there were options. He examined me and seemed to really care. He took blood for tests and said he would get back to me.
Five months later I still had no information from him. He finally called with so much medical mumbo jumbo I had no idea what he was talking about. In the interim my wife had gotten a job in….you guessed it….North Carolina. I informed him that we were moving and he took time to find a good doctor for me. I am seeing him now and he is great. So, we headed back to North Carolina and I went back to the same hospital I was at previously but I was seeing a different doctor now. I had hope that he would be good. He is.
Back To North Carolina Again
I went back to North Carolina and sent my request to release my medical records to my new doctor. Everyone returned information except the carcinoid specialist from New York. Now, I have to admit that I am still stunned to this day that I was never able to get anything out of his office. Well, I did get a single page that my current doctor said was useless. I spent $1,500.00 for all of these tests and I still have no information from this guy. I feel totally ripped off. I’ve gotten to the point where I have decided to let it go and move on. I’m trying to stay positive in my fight to survive this.
Where I’m Going
Yes, I am back in North Carolina. The good news is that my family situation has stabalized. We sold our house, purchased a new house, my son is in a new school and he is ready to go and my wife loves her job. The only piece left in the puzzle is my cancer.
As you read in the beginning, the chemo does not seem to be working. Yes, I will try the Afinitor if my doctor suggests that I should but, I don’t have a lot of hope for it. It seems that Afinitor is really more tailored to people who have Neuroendocrine cancer that originates in the pancreas. That’s not me. I’m really hoping I can find something on the web that will look to be more promising than this. You can read about my struggle with this new drug here and you can read about the mouth sores and how to deal with them here.
I’ve been off chemo for a few weeks and some of my energy is back. I’ve decided to use that energy to try and find another option for myself. So, I’ve been reading about a few options that may be available to me. Some of those include radical surgery and some include options only available in other countries or in clinical trials. I am seeking multiple opinions now.
It seems that radical surgery is now being considered an option for patients with advanced carcinoid cancer. I have seen a few video testimonials where the patient had stage 4 cancer with distant metastasis yet surgery was still performed where, in the past, this was never an option. Now, even though a systemic approach is typically recommended in these cases, it seems that surgery is being used to treat patients more often than in the past. I’ve noticed that often the result is not always a complete removal of the tumors but, rather, a relief of symptoms and “stable disease”. In other words, better quality of life and reduced tumor load with continued management. Here’s a video.
My understanding of PRRT, is that when a patient tests positive for Octreotide, they inject a radioactive version of PRRT that is absorbed by the tumors. As I understand it, this is a very effective systemic treatment for treating patients with carcinoid cancer in advanced stages. You can read more about PRRT here.
I haven’t ruled out chemo but I think I need to get in touch with a carcinoid specialist to see if they have a different take on it. You see, although my oncologist is a great guy a does a great job, I have a rare cancer and I cannot expect to be his “special” patient. I need to go where I am one of a number of patients who have my health issues and that is the main focus of the doctor.
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