My Carcinoid Story
My experience with Carcinoid Cancer began in January 1995 although I did not know it at the time. I had a heart attack followed by a couple of small strokes. The medications prescribed by my primary physician masked symptoms we now recognize are related to Carcinoid Syndrome. The doctor expressed the opinion that my flushing and diarrhea were related to undesired but not unexpected effects of the medications.
During the next seven and half years I voiced my concerns over the ever increasing symptoms to both the primary care physician and the heart doctor. Each time I was pronounced as being in extremely good shape… for a man my age and medical history.
By March 2002 the diarrhea had advanced to the point that it was socially embarrassing which prompted an “early retirement” as I could not leave my home office very often. Taking meals with business associates and friends had been dwindling due to the embarrassing flushing events when my neck, face and head became extremely red and always created comments at the table.
But now I was becoming weak, listless and apathetic. I had started a consulting business to work out of my home office during hours I wanted and doing the kind of work I wanted to do. Even with that freedom, I just didn’t feel like doing anything and the symptoms got worse.
In May I knew something was terribly wrong and that after all this time my doctors could not or would not even look into the possibility of something else causing my problems. So I contacted the Sansum Clinic in Santa Barbara, California and made an appointment for a complete examination. During the initial interview the physician narrowed down my problem to one of three possibilities and ordered tests to isolate the cause of my distress.
The tests indicated it was the worst possible cause, Carcinoid Cancer. I still recall the shock of hearing the word “cancer” the first time as it related to my condition. We had been discussing the possibility of a tumor but this was the first time it was suggested it was other than benign.
They determined the “primary location” was in the mid-gut and recommended surgery. We took that under advisement as we returned to our home to consider all the options. During the next several days the pain grew worse each time I would eat and create “movement” in the intestines. The main cancer mass and tumor was located at the point where the small intestine meets the colon and it failed to show on all tests with the exception of a CT scan. This scan also showed that the liver was fully involved with over 20 tumors.
We accepted the doctor’s recommendation for surgery and in late August 2002 a considerable amount of my internal parts were removed. A biopsy of these parts revealed Carcinoid Cancer was involved in each one. The doctors stated the tumors in the liver were to advanced for surgical procedures. For the first time we learned that this was incurable and inoperable.
The only good news was it was a “slow growing” cancer. I asked what that meant. Did that mean I got to live longer with the problem? Take longer to die than those with “fast growing” cancer? Why can’t the liver be operated on? Why isn’t it curable? And many more questions that all support the denial portion of my journey. This passed quickly but it was still a shock.
I began a regimen of Sub-q Sandostatin injections for the Carcinoid Syndrome in November 2002, and Testosterone for physical weakness in February 2003. It had been reported that in time the Sandostatin may lose some of its effectiveness. In the beginning to intermediate stages this can sometimes be estimated but in advanced cases such as mine, well, no one knows. We all take it one day at a time. After a few months we switched to Sandostatin LAR injections once a month.
A very old report stated that statistically, life expectancy from the onset of symptoms was around 7.42 years. Just about the same amount of time the doctors ignored my symptoms and complaints. It has now been over 13 years since the symptoms began and although my case is in an advanced stage, I am still here and able to function. OK, not like before but then I am not confined to 30 paces from my toilet. I eat a lot of things I simply could not before the surgery and medications, and that is a big improvement.
I have avoided documenting the details and statistics of my journey with Carcinoid Cancer since every case seems to be as unique as the individual. What we are all interested in is what will happen next. Will there be pain? How long do I have? No one is comfortable discussing these issues but yet that is what we all want to know.
Here is the answer; but I warn you, it is not very satisfying. It differs for each person. Your journey is just that, your journey. The end of your life is as unique as how you lived it. Not everyone lives exactly the same or passes the same. How this will end for others is not necessarily how it will end for you.
When I was born, 65 was the life expectancy for most children in the United States. So that number has had a special meaning for me all throughout my life. My Dad died at age 55, just before his 56th birthday and I wondered if I would make it to my “allotted” time. God has been good and I indeed did make it to 65 and beyond.
It may be important to point out that maintaining a positive attitude is very helpful. There is always hope. Hope for a cure, a significant delay, a reversal, anything that will help you feel better. Yet we all know that someday this life’s journey will come to a close. Don’t let the illness defeat you. It is a major problem but your whole life is not the cancer. It is just one of the many things you have to deal with and you have dealt with a lot of other issues in your life. So keep on keeping on.
Believing that every life story should have a moral, or at least a purpose, here is my encouragement to anyone reading this and trying to learn more about Carcinoid Cancer.
Take responsibility for your own body! Doctors are very much like any other profession. They can advise but it is YOU that must decide! They are busy doing a fantastic job for the most part and society is and should be indebted to those in this profession. But, they are not perfect and given their case loads, insurance companies, government regulations, etc. they do a wonderful job. Only you know your body and how you feel. Don’t accept fast answers if it just doesn’t seem right. Get another opinion.
Don’t wait to long! If I had acted upon my condition a few years before I did, I might have a good chance of extending my life expectancy not to mention the quality of life. (And keep my innards).
Don’t let the condition dominate your entire life. As long as you are still alive, live!
Do not accept defeat. Only you can let yourself be defeated.
When I learned about my condition I wrote the item below and during these past few years my opinion has not wavered. If you find some comfort from this then please use it to your best advantage.
May God continue to bless and keep you and yours.
Death has not conquered!
I have been released! From a body that was in decay, growing weaker, and would have given out at some point in the future anyway.
I have been restored! In a new body as promised by my Lord Jesus Christ.
I am reconciled with my Lord for eternity.
I am remembered by so many loving and caring friends and family that I will continue to live in their hearts.
I am grateful to my God for the privilege of having a wonderful life.
I thank my God for the opportunity to learn and grow the way He wanted.
I had many failures but only one victory was necessary and He provided that!
I don’t want to start a list of those I have loved and who love me, but of course the one person that cannot be ignored is Margie. My very best friend and companion for life. We took a vow that we lived everyday. As a result, we truly become one as God has so ordered in His Word. All of His blessings were bestowed upon us. No one has ever had it better than we did.
My life was one of complete contentment. God filled every need. My wife and I loved each other completely.
So I ask, “How could death possibly conquer?”
Once again, God has the final victory. To Him I give my life. A poor offering indeed but it is what He asked for.
Bill Evans 2002
(The above was written when I was given my “death sentence.” My status has changed, the thoughts have not. This is, and will be, valid in the future.)
In 2004 and 2005, Bill participated in a clinical trial of a new drug designed for Carcinoid Cancer and allowed highly skilled surgeons to remove 75% of his liver, reducing the number of tumors to four. A recent MRI now shows 11 tumors in the liver and several small tumors in the pelvic area. In April 2008 Bill agreed to participate in another clinical trial of new drug coded RAD001. The results are amazing! Recent scans indicate limited new tumor growth and the symptoms of Carcinoid Syndrome have greatly reduced.
And yes, as of August 2010, Bill is alive and doing well considering he is classified as Stage 4, Terminal.
The following is a journal of the steps I have gone through and
may not be of much importance to anyone except a dedicated reader.
September 25, 2003
As expected the medication has been compromised. A recent CT scan revealed that the tumors are growing again. Pain has become a 24/7 situation. Usually it is just darn uncomfortable but then about once a day, the pain hits incredibly hard. Bad enough to send me to my knees crying. The doctor increased my medication to a 30mg shot of Sandostatin LAR every two weeks. He plans to start chemo in October.
February 20, 2004
The latest CT Scan shows that 5 of the tumors have grown together in the liver and represent a mass that measures 7 X 5 X 4 cm, about the size of my fist. The second largest mass is just a little smaller, about the size of a large avocado. There are still numerous small tumors. I am receiving LAR every two weeks, the minimum time frame, and there are continuing and increasing signs the medication has been compromised. It can only get worse.
I am on my fourth chemo treatment which is administered 24 hours a day for 5 days. Then a rest for 23 days and start over. It makes me sick and weak but the doctor seems to think it is helping. There is no clear evidence that is the case. Each time I have this treatment I must drive 100 miles round trip and 3 times during the treatment period. This is proving to be a burden so I am looking for another doctor in the local area that is familiar with Carcinoid Cancer treatments.
I wrote to the two US Senators and 5 of the US Representatives that I know personally and requested their assistance in obtaining the “Rotterdam” treatment for patients in the US. We want the FDA to move things along. They are working the case and we hope to have word soon.
Well, we heard back from the elected officials and learned that the FDA does not seek out drug therapies to approve. They must wait until the drug and its data is submitted before they can take action. The drug company has not finished their studies and not submitted any requests to the FDA for approval. So much for that course of action.
The LAR continued to decline in effectiveness and usually “wears off” about 7 to 10 days after the injection. That leaves about 4 to 6 days every two weeks where there is minimum relief from the LAR.
With the kind assistance of my new Oncologist, Dr. Robert Havard, who is located in my same town and much easier to access, we stopped the chemo, which was not apparently helping in any manner, and found a clinical trial at UCLA in Los Angeles that might help my condition.
Went to UCLA and found a wonderful group of dedicated professionals that were very helpful. However, their trial was not appropriate for my condition. Most of the trials I looked at had a list of conditions that one must meet before they can be accepted. Like age, sex, previous health events, current condition of the disease, etc. I was not eligible for any of them.
When we returned from the UCLA trip I was feeling somewhat hopeless. It was one of those, “Now what do we do?” times. Then by chance, or divine guidance, I went online to http://clinicaltrials.gov/ and learned of a program being conducted at Cedars-Sinai in Los Angeles. I couldn’t believe it! It was if it were written exactly for my condition. So I called, they sent material via e-mail. I wrote back, they called and set an appointment.
On August 16, 2004 we met with Dr. Stephen Lim and Dr. Anthony Heaney and were accepted into the study. It is a test of a new drug termed SOM230b and it uses four of the five Human Somatostatin Receptor Subtypes, (HSSTS) instead of the one out of five used by Sandostatin LAR.
This should give better results for a longer period of time. But that is what the study is to determine. Not publicized but very important is the possible side effect of shrinking existing tumors. Many patients in stage 1 testing reported this effect.
It is a six month study and if it works it may just extend my life expectancy by up to two more years. If it doesn’t work…well I’m no worse off than I was before. The only downside to the study is daily self injections. I’m not a fan of needles.
On September 7, I had my last LAR shot and am in the process of weaning myself off of the long acting drug with sub-q injections of Sandostatin. After four weeks of this I must STOP all drugs before administering the SOM230b. That will be the rough period. I really don’t want to go back to the experiences I am familiar with before Sandostatin. But it will be done!
March 4, 2005
We started the trial of SOM230b on November 1, 2004. We concluded on January 24, 2005. The doctors declared that the drug was only “marginally” effective and due to my advanced condition, it could not do much for me. CT scans taken before the trial and right after verified that two of the larger tumors shrank. But another had grown. There is some indication that the drug was not really that helpful to me.
However, during the course of the treatment and trial, we learned that one of the world’s best liver surgeons, Dr. Nick N. Nissen, was working out of Cedars Sinai. I asked our team doctors, Lim and Heaney about Nick and they not only knew him, they were good friends.
Dr. Heaney showed my CT scans and other reports to Dr. Nissen and they discussed the case. I was asked to meet with Nissen and when we did, imagine my surprise to learn that he thought he could help me with a resection of the liver. He went on to state that I was strong enough to withstand the procedure and where they turn down about 8 out of 10 with a similar condition, I was one of the lucky ones they would consider. To my amazement I learned that the liver will grow back, usually within several weeks. And what grows back will be healthy! Wow! Why had this not been mentioned by anyone before?
So on January 31, 2005 at 11:00 AM I underwent the surgery. They removed the entire right lobe, about 65% of the total liver, then 5 tumors ranging from a tennis ball size down to golf ball size, leaving about 25% of the total liver. (It is possible to lose up to 85% and survive. But that is with a healthy liver). The operation took about 4 hours and I spent 1 full week in the hospital. Recovery took about two months.
In 3 months I was scheduled to return for another treatment, Radio Frequency Ablation, a process where they insert a rather large needle into the liver, guide it into a tumor and then turn up the heat which “cooks” and kills the tumor. They propose to do this to the one ping pong ball size tumor in the left lobe. The remainder of the tumors, about marble size, will be left alone for now since they are too small for any procedures offered at this facility.
What a journey it has been! From inoperable and incurable to gaining the function of my liver again! I’m not well and I know this is not a cure but we are sure delaying the victory that Carcinoid had in mind. My symptoms have greatly reduced and I am hopeful I will be able to return to some chores around the house in a few months.
April 1, 2005
Recovery has been so slow that it is immeasurable on a day to day basis. But when one looks back over the past 8 weeks, I can say I really do feel much better. The surgeon told me I would question the wisdom of having this done for the first few weeks. Boy did I! 24/7 I asked myself why I agreed to undergo this procedure. But now I see why. I’m not cured but I have returned to a stage that has improved my quality of life and I have renewed hope for living a few more years.
June 15 2005
We returned to Cedars Sinai Medical Center in Los Angeles for the next treatment phase, HACE – Hepatic Arterial Chemo Embolization. This course was chosen as a better treatment than the RFA. Unfortunately it did not go as smoothly as we had hoped. There were complications with infection, fever, pain, etc. Had to stay in the hospital longer than we thought. The four hour ride home was particularly uncomfortable and was complicated by heavy traffic trying to get out of town for the weekend.
Finally recovered from the procedure…somewhat. Considerable weakness most of the time. Limited activity. Made contact with Stanford Cancer Center and have an appointment September 7, 2005 for evaluation of the CyberKnife procedure. Don’t want to go through chemoembo again. We hope to address the one large tumor and 4 small tumors left in the liver.
November 22, 2005
Been trying to get an answer from Stanford about the CyberKnife treatment. Had a MRI and other tests in October.
March 31, 2006
Finally talked with the Stanford doctor, Dr. Koong, and he gave me the results of the MRI. He said that he has received reports that Sandostatin LAR can “shrink” some tumors but he remained skeptical until now. Comparing the MRI they took, it looks as if all the tumors they could find have shrunk! Not much…but that is the right direction. As a result the doctor suggested a six month layoff from all treatments except the LAR injections. The local doctor agreed with this approach. Then in the Fall, I will undergo another MRI to see the status of the liver.
In the meantime I have grown even weaker and unable to do simple chores around the house. My flushing has increased and I tend to have a steady red glow most of the day.
May 14, 2006
For some reason my energy has returned in small measure. I cannot do the things I did before the illness took over my life, but now I can do chores around the house and feel pretty good most of the time. The dreaded “pain attacks” are now very rare but every evening I tend to “run out of gas” and must rest until an early bedtime. So it is great news and a joy!
September 11, 2006
Been growing weaker and the symptoms are increasing. Always flushing, pain attacks are about 4 to 5 out of every 7 nights and of course the big “D” makes its appearance about 5 times a day. Talked with the doctor and we agreed to increase the Sandostatin LAR to 30mg every 3 weeks.
October 2, 2006
Spent last week in Portland Oregon attending a Carcinoid /NET Patient Conference. Wonderful experience and met some wonderful people. It was a “glad-sad” experience… glad to see so many others that had the same problem so one could be reassured they were not alone in this journey, but sad because there were so many going through the fight against this disease. 350 patients and caregivers, 125 doctors. As a result of the conference, I am going to conduct some research and explore alternative means of treatment. The CyberKnife only addresses the tumors one at a time where other treatments can perhaps attack the remaining ones all at once. In addition the CyberKnife process would injure a lot of healthy tissue.
Saw Dr. Heaney at the conference and he said that Cedars Sinai was going to participate in a trial of the LAR version of SOM230. He suggested I contact them to see if I meet the criteria for participation.
October 4, 2006
Have to use the cane most days now. Wobbly legs. Symptoms increasing. Doing research on alternative treatments with an eye to combining Sandostatin with other drugs, perhaps Bevacizumab and Temozolomide.
April 26, 2007
The doctor ordered a test to determine the amount of Sandostatin in my system 3 weeks after injection. The rating was about 2,354 and it should be between 10,000 and 15,000 parts per ml. We agreed to increase the dosage to 60 LAR every 28 days. All symptoms are on the increase and the pain attacks are increasing in frequency and intensity.
I have been trying to encourage a number of folks that are just discovering they have Carcinoid Cancer and are in a tailspin wondering what to do next. It seems that just a couple of words of support and factual information help a lot because the medical profession they are dealing with is not familiar with the disease and cannot be of much assistance.
Based on a press release I had prepared for the Caring for Carcinoid Organization CFCF, a local newspaper reporter is doing a story for distribution in May. There are so many folks walking around with Carcinoid and don’t know it. Anything that heightens awareness and causes people to seek treatment is helpful to so many families and their future.
October 1, 2007
Celebrated my 70th birthday this past weekend. So now I am officially five years beyond my original warranty. At the September visit with my local doctor we agreed to another MRI as the symptoms are increasing. Blood levels are up to 6,691 now and the doctor says he is satisfied with that level because the test is accurate to within plus or minus 5,500 parts per ml. He said that adding 6,691 to 5,500 brought the level up to over 12,000. I pointed out that one could just as well subtract 5,500 for a level of less than 1,200. So we agreed to call it even at 7,000, still short of the goal.
From what I have learned from Dr. Woltering’s writings, which lab does the work can make a huge difference.
The increase in symptoms is usually an indicator that the tumors are growing and the Sandostatin is being compromised. I requested we do not increase the dosage just yet because after 90 LAR the virtual last stop is 120 LAR and I want to postpone that as long as possible. A form of denial I guess.
Options are dwindling. Symptoms increasing but still we carry on.
As expected the tumors are growing. I now have 11 in the liver and one on the right kidney that they could identify. There may be others but we are concentrated on the liver at this time as it represents a clear and present danger. Increasing the Sandostatin dosage to 90 appears to be in order. Something must be done as symptoms are increasing and a general overall weakness dominates my daily life. If I try to do much of anything of a physical nature the pain increases and I must rest for a long period afterwards. Sometimes for days.
Found a clinical trial for a new drug manufactured by Novartis and administered by Cedars Sinai Medical Center in Los Angeles. Same folks I participated with during the SOM230b drug trial in 2004. I completed a telephone interview by answering a lot of questions about my current condition. Now it is a matter of my conditions meeting the full spectrum of the study.
It would be interesting to participate because the new drug is used along with Sandostatin and is designed to help enhance the Sando and thus control the growth of the tumors. The only problems are; 1) the study is in Los Angeles which means an 8 hour drive every two weeks for an extended period of time and 2) the maximum amount of Sandostatin they will give me is 30. It may also mean 3 months or more of toilet time as the lower amount of Sando cannot control the symptoms.
Pain attacks are occurring about 5 out of every 7 evenings. We simply do not go anywhere after dark. Without warning it hits like a large knife being jabbed deep into my right side under the ribs. I tend to fall, scream, and roll around until it passes, usually after 10 or so minutes. Have increased the amount of pain meds but it really doesn’t help that much…but then I don’t want to skip using them to find out how bad it can get.
Made several trips to Los Angeles and the Outpatient Cancer Center at the Samuel Oschin Comprehensive Cancer Institute located in the Cedars Sinai Medical Center. Based upon several tests, interviews and exams we were accepted into the clinical trial of an investigational drug identified as RAD001. Dr. Edward Wolin is one of the best Carcinoid specialists in the US and is the Administrator for the project at Cedars Sinai. Dr. Wolin advised me that my options were very limited and this trial may be just what I need. With the integrity of Novartis and the skillful hands of Dr. Wolin, I don’t believe I can do any better.
Been on the RAD001 clinical trial for six months and the improvement is so wonderful. Symptoms of Carcinoid Syndrome are all but gone. Pain attacks now only occur about every two weeks and then they are not as intense as before. Diarrhea has virtually gone away, flushing is at a minimum, so I look almost normal again! Hooray! Now to see how long this effect will last.
Yep, still here. A participant in the Clinical Trial of the drug, code named RAD001, which has been a God send to me. My symptoms have all declined to nearly a vanishing point. Here is a summary; pain attacks are only about 1 every week or two. Diarrhea is gone! Flushing is gone! Wheezing is very low. MRI and CT scans indicate that the rate of growth is only 1 or 2 mm every three months! So it is not a cure but it is a wonderful treatment. The scans also revealed 11 tumors in the liver, one on the right kidney, and “numerous” tumors in the pelvic area. Sounds ugly doesn’t it?
But not all is well. The situation at present is this; I am in need of a heart by-pass. (In November I had the 8th stent installed in the same LDA, [artery] and it isn’t helping very much). However, if I have the operation, I must give up the cancer drug, (RAD). If I continue to take the RAD and ignore the heart condition, I run the risk of a heart attack. To further complicate the situation, the RAD has an effective period that varies with each person but seems to run out somewhere about the 17th month. At least it did in a European study. I am in my 21 month and setting records. (Many of the folks that started this study at the same time in Los Angeles, dropped out at 9 months because it was no longer effective.)
So the decision I have made is this; as long as the drug is working for me and the data is helping the drug company and doctors, then it may be of some assistance to other patients at some point in the future. And after all, that was a big part of my decision to participate in the trial.
Besides, I am now in my 72 year, a full 7 years beyond the “original warranty” so I have no complaints. It has been a wonderful life with a wonderful wife and family. No one has ever had it better! Since I had a heart attack before and recognize it is painful but fast, I prefer to go that way than with the cancer which is painful and slow.
Continuing in the clinical trial of the drug coded, RAD001 and it continues to work. The doctor told me that I am considered “stable” under the criteria they use in the study. Of course I had to ask what that meant. He explained that as long as the tumor growth was less than 20% of the original database taken in 2008, I would be declared stable. Then he told me I have experienced a 10% growth in the last two years. With another 10% I’m out of the study.
What then? They will try to find another drug, another trial to keep me going. So there still is no cure but only good treatments that help to abate the symptoms. And right now, that is enough for me.
The heart continues to be a problem and I take so many drugs for that I am constantly dizzy and must sleep a lot. If the study does run out on December 31, 2010 as expected, I must take some action on the heart issue.
I continue in my attempts to assist others going through this same journey. I meet Carcinoid patients at Cedars Sinai in Los Angeles and over the Internet all the time and have worked with folks all over the world. I created a couple of writings that seem to help some people understand what might be happening in their lives and how to cope with the events. I have met some wonderful people, patients and caregivers alike. Sometimes we lose one and that hurts but if they were helped along the way, it is worthwhile.
Well, so much for having figured it all out! The doctor and trial drug administrator revealed that I have been on the placebo for the past 28 months! They wanted me to continue with the real drug and I agreed. If I can give them another 28 months on the drug they will have a side by side comparison that may be helpful in the fight against this disease.
I asked the doctor why did my symptoms reduce so much when we cut the Sandostatin by 2/3 and I only had sugar pills for therapy? His response was that in some cases increased doses of Sandostatin can elevate symptoms and by reducing, the symptoms will be reduced. At least that is one possibility according to work performed by Dr. Woltering.
So we will see what happens now. This aspect just complicates the heart situation. I have a whole new time frame for tending to the heart surgery. I want to stay on the drug until they get the data they need to be helpful.