My Carcinoid Cancer Story Updated December 2017

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.

Looking Back

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.

New York

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.

North Carolina

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.

Looking Forward

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.

Surgery

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

Ed – To find out how to use my images on your blog for free – Click Here

scrollwork

 

40 Comments

  1. Hi Ed, Liz here from the Gold Coast, Australia. You’re story resonates with me as being almost identical to mine. I ‘get you’. I also am a ‘bad patient’ and if it wasn’t for my extraordinary charm I’m sure my doctors would be climbing the walls before I meet with them every time. Now, I’ve been through chemo, operation and the nuclear therapy (which I think is the PRRT). Im on Sandostaton LAR and it has still progressed albeit a small amount. Currently considering what to do next. Though you’d be interested in this article which I’m talking to my docs about now
    http://www.medscape.com/viewarticle/819220 “Unprecedented Responses Seen in Neuroendocrine Tumors”

    I’d like to keep following your story. It IS inspiring and DOES make a difference. Than you.

    • Wow! How did you find me! 🙂
      Thanks for the encouragement…..wish I had your charm. Hee Hee!
      Well, I’m researching and consulting more doctors.
      It’s pretty frustrating.
      I want to ask more about Sandostatin since I only received 2 shots.
      My understanding is that it takes a while to start working AND is not as effective as when it is paired with another therapy. I have to admit…I’m getting a bit “war weary” and need to find some sort of way to give myself a mental break. Maybe I should start drinking? < > 🙂 Nice to know you. Do you have a blog?
      Ed

  2. Check out Dr. Eric Liu at Vanderbilt in Nashville. He also has some good talks on YouTube. I am undergoing treatment at MD Anderson in Houston.

      • Hi Ed my name is Brenda I have carcinoid cancer also in my lungs . I am going in to stanford where they have a carcinoid center they are going to remove the largest and most active one the other tumors in my lungs did show to be carcinoid tumors . I do not know what they are thinking but no cancer drugs for me he is saying I was good with that . I am from SLC UT I did not think they knew enough here at our cancer hospital they just wanted to give some shot in the butt and see what would happen that was not good enough for me . My husband had a friend that had a brother that started the carcinoid center at Stanford he got me to the person out there to get me started it has taken some time but it is going down on the 16th . I am hoping to be able to breath better when it is taken out . Ed I will pray that things go better for you I think you need to find a place that takes care of carcinoid cancer . I believe there is one in Colorado ,Texas ,New York and San Francisco that is where I am going . I hope this helps good luck to you and everyone on this page that has this cancer.

    • It has been awhile and I hope you are doing well. I would be interested in what you think of MD Anderson as I have not heard much but complaints that were about the hospital in general. They are the closest specialists to me. Thanks.

      • Hi Ron. I’m now seeing Dr. Eugene Woltering in Kenner, LA. I also see a local oncologist at Baylor Dallas for monthly Somatulin injections. MD Anderson was taking a wait and see approach. I decided I wanted to be more aggressive and changed to Dr Woltering. Dr Boudreaux did surgery to remove metastases to my liver and in the process I found out I had many more small tumors which were removed in the process along with my gallbladder, ovaries and part of my colon. They also put me on the monthly injection. So glad I had the surgery and didn’t wait and see as MD Anderson wanted me to do. I was seeing Dr Dasari. Only the liver tumors showed on my scans. At least now I know what I’m dealing with.

        I know someone else that just went to MD Anderson for a lung NET and they did surgery on her. Don’t know if she was seeing a different doctor or if they did surgery because she was much younger and no metastases or what. Let me know if I can help answer any other questions for you. If there is a support group in your area, I would highly recommend joining as they can be a wealth of information.

  3. Ed,
    I have never been more disappointed with the medical profession than I am reading the run around you have gotten. I do not have carcinoid cancer but have been with my mother since her journey began. She started with a oncologist that did not even know the word carcinoid. In one of those “God moments”, the post op nurse for her exploratory surgery had family who just happened to be diagnosed months earlier and told us to look up Dr. O. Dr. O turned out to be Dr. O’Dirisio at the University of Iowa cancer center, in Iowa City, Iowa. I know Iowa is not exactly close to North Carolina but they know their stuff. The team of doctors there, including surgeons are up to date on all of the changing treatments. As with every medical visit, things are not perfect but we always leave there with a feeling of peace knowing Mom is in the best hands.

    I am also outraged that they stopped your sandostatin treatment after 2 shots! Every case is different but there are things to tweak before calling it a failure, like dosage or frequency. There is also the daily shots you can give yourself. Between these two options we have kept Mom’s progression to a minimum for 4 years now. She is just now beginning the CapTem treatment, so I cant’ speak to it.

    I am sure there are other very capable doctors out there but if you are still getting the run around from doctors that have no idea I suggest at least going to Iowa city. Perhaps they could help you find somebody closer to home too.

    Good luck!

    -Brittney

    • Hi Brittney,

      Thanks for the sympathetic ear and I”m sorry to hear about your mom. At least she has you!. 🙂 Yeah, it’s been rough. I actually had a few doctors on the list to visit. I actually tried to get into the gallium 68 study with Dr. O but I did not have a “stable disease” so I was disqualified. I also had Dr. Eugene Woltering on the list and I think there is a guy in Florida. I ended up going to Nebraska to see Dr. Vargas. They specialize in radical surgery and if it had not been confirmed that it was in my bones I would have already undergone surgery. Unfortunately, it is in my bones so surgery is not an option for me.

      The good news is that I am on Afinitor and it is shrinking my tumors right now. Eventually, Afinitor stops working so I’m looking for a option. I just found something called DCA that was actually used on a carcinoid patient. I don’t know if it worked but I’m about to post on it. Here’s the link to the pdf. I didn’t read it yet but it peaked my interest.

      I’m currently at a Major hospital in NC and I am reasonably happy. Unfortunately, all of these cancer doctors treat carcinoid cancer like it’s any other cancer so, it’s a bit frustrating. That’s why I’m always researching solutions on my own. BTW, I know exactly what you mean by “God moments”. 🙂 So, how’d you find me? 🙂

      *** Update ***
      It looks like the DCA may have worked on the Neuroendocrine cancer according to the study.

      • I googled CapTem side effects and your blog was one of the options. i find that blogs are way better than study findings in what to expect.

        I sadly find it kind of funny that you were disqualified for a study because you didn’t have a “stable disease” and my mom keeps getting disqualified because her’s is “grossly stable”. So I guess you have to be just the right amount of stable/unstable.

        The thing with carcinoid is that treatment is continually evolving. 4 years ago it was surgery and sandostatin for us poor folk. if you had the money you could go to Sweden for the old school PRRT like treatment. Now there are so many more choices, some work, some don’t.

        You and your family have been officially added to my prayer list! It may not heal you but it doesn’t hurt. 🙂

        Good luck and God Bless!

        • Hey, I believe in prayer 100%. We will pray for you too. From my understanding PRRT does not work on large tumors which I have. I am praying and hoping that I can eliminate the smaller tumors, including the ones in my bones, so that I might be able to get the surgery to remove the larger ones. Hey, I just published the post on DCA. Check it out….it looks promising.

  4. It seems that many of us who are “zebras” are rather well-endowed with the “charm” factor! LOL

    Though I am a fighter, I realized that I have to pick my battles, so making the first doctor who told me I had “six months to a year” pay for instilling the fear factor was stealing life (living well) from me. But oh, how I wish I could rub his nose in it three years later. I have also stopped looking over my shoulder every step I get.

    I wake up every day and say, “Thank you.” I concentrate each day on “what difference can I make today” and have (tried) to stop worrying. I think I have stopped “fighting”… not to say I have given up, but simply to take things as they come, if that makes sense.

    As long as this reply is getting, I should make it into a blog entry. 😉

    • I see life the same way. I actually saw a video that showed some researcher who froze water with different words played in a loop while they froze. The water with words like hate and anger etc. were ugly and the ones with love froze with beautiful patterns. I don’t know if it’s true or not but, I try to keep it positive. 🙂 So, yes, getting vengeance is a mistake in my opinion. I like your blog by the way. 🙂

  5. Ed: I live in the Winston-Salem area, see Dr Woltering, and need an oncologist close by who is receptive to working with me, him and carcinoid. I know the name of Dr Morse at Duke but that is too far away. Would you email me offline and let me know who you are currently seeing and where he/she is. Thanks

  6. Pingback: What Carcinoid Cancer Is Like For Me - Carcinoid-Cancer.com

  7. My mom has carcinoid in the liver, I don’t particularly care for her Dr. He never gives my mom positive energy, we got her some cannabis oil. From my research it has helped many people including carcinoid patients.

  8. Ed I also have carcinoid tumors mine sadly are in my lungs I was diagnosed when I was 12 after removal of my pup left lung and the calaspal of the lower left lung when I was 18 they found 3 more tumors sadly in my only remaining lung the right I some how found ur blog and would love to continue reading ur blogs and to fallow u try some things u have a 1 on 1 convo would be amazing stay strong and whitey it keeps us around longer

    • Hi Crystal, I’m so sorry they found so many tumors in your lungs. Have you heard of PRRT? It helped shrink my tumors by about 30%. Maybe it could help you?

  9. Crystal, sorry you have had to deal with this illness and especially at such a young age. I’m curious if your parents smoke/smoked at all? I was around second jab smoke my whole life until age 18 when I moved out. My mother also smoked while pregnant with me. I’ve always wondered if this could have had anything to do with me getting carcinoid cancer.

    • My mom did smoke however my pediatric oncologist said that even thought I have it in my lungs that it’s not lung cancer and has nothing to do with smoking it’s said it’s commonly found in the stomach and intestines that it’s very rare in the lungs and they haven’t figured how or why it sometimes menafest in the lungs I hope that can help u

      • You’re right…nothing to do with smoking. It’s a cancer that affects the neuroendocrine cells which are cells that do things when exposed to certain hormones.The digestive is a perfect example. They squeeze and push the food through your intestines when exposed to hormones. To tell you the truth, I don’t fully understand it but this is what I have gleaned from reading and studying. If you’re on Facebook please friend me. There are tons of support groups on there that can help you get information. 🙂

  10. Hi Ed. Thank you for sharing about your journey. I found your site researching carcinoid tumors. I have had carcinoid-type symptoms for several years now and I’ve been to the doctor many many times over the past few years. I was told that I have ibs, then asked by another doc why i thought i have ibs. I was hospitalized last year with pancreatitis. No known cause, but they removed my gallbladder anyway. Here I am a year later and still having the same symptoms. I’ve had many tests and there is nothing ever wrong with me! Doctors seem unconcerned about my symptoms, they have no apparent cause and I am in no apparent ‘danger’. I genuinely think they think it’s in my head. I’ve read about carcinoid syndrome –
    It comes up when im doing online ‘ research ‘ of my symptoms, but tend to disregard the idea. It’s so rare I think it probably can’t happen to me.
    Maybe one day I will one day get the nerve to insist my doctor look into it.

    • Have you been tested by a specialist? There are tons of test specifically designed to find carcinoid / net cancer … honestly, I was told that I had “fatty liver” disease… it was stage 4 cancer.

Leave a Reply