Where I’ve Been
Updated: December 2017 – 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 neuroendocrine tumors. Also, I have been told that surgery is not an option because of the amount my cancer has spread and the volume. I have seen Dr. Liu in Colorado and he will be reviewing my scans for a final decision on surgery so, that may change. You can read about my experience at the Rocky Mountain Cancer Center Here. Still, this is why my oncologist suggested a systematic approach and 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. I have a recipe for relieving mouth sores here. 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 prepared to die. Well, I returned to New York again and I did get Sandostatin shots but I wasn’t going to “prepare 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, the doctor became angry that I had sought a second opinion 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. No, sadly, I am not exaggerating. Finally, the doctor saw me. He seemed great! He gave me a “Pep Talk”. Told me NOT to wait and see and NOT to prepare 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 that doctor 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, this time, I was seeing a different doctor. 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 stabilized. 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 I mentioned in the beginning, the chemo did not seem to be working well. It seems that Afinitor is really more tailored to people who have Neuroendocrine cancer that originates in the pancreas. That’s not me. I really did struggle with this new drug and you can read about it here. You can read about the mouth sores and how to deal with them here.
When you are on chemo, you are often given “breaks”. These breaks are either scheduled or a result of the side effects of the chemo. Sometimes your body cannot take any more and your doctor will stop treatment temporarily. I was on a break from chemo and decided to use that energy to try and find another option for myself. So, I read 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. Not all doctors agree but some think that you should remove as much as possible as soon as possible. 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 Latest Options
Since writing this blog post back in 2014, I have had options open up for me. First, I went to Excel Diagnostics in Texas and received PRRT. PRRT is a treatment that, when a patient tests positive for Octreotide, they bind a radioactive particle to the octreotide and inject inject it into your blood stream. That lethal combination is absorbed by the tumors and kills them. I had this treatment and I am happy to say that my tumors have 30% smaller and my cancer has stopped growing. That is called stable. The medicine is only supposed to work for about 3 years but, hey… I’ll take it! 😀 I wrote a series of blog posts about my experiences. Here’s the list. PRRT Introduction, Trip 1, Trip 2, Trip 3, Trip 4 – I am also planning on writing a better introduction to PRRT and a complete summary of the experience. 🙂
Surgery and A Specialist
Since originally writing this post I have been fortunate enough to find a specialist that I feel comfortable with. I traveled all the way to Colorado to find him but I don’t regret it. He was kind, informative and is waiting for my MRIs to determine if surgery is still an option for me. I don’t think it is but it’s nice to know that a doctor isn’t closing doors on me. You can read about my experience at the Rocky Mountain Cancer Center here. If you haven’t been told, you really need to consider seeing a specialist with this cancer. Most doctors don’t know enough about it to treat us properly as you probably can see from my story.
You can read the original version here
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