Les' Story - My 20+ Year Encounter with GIST
by Les Anderhub
Somewhere around 1990 or 1991 my Primary Care Physician misdiagnosed me as having hemorrhoids. I believe he did a visual instead of a digital examination of my rectum. He told me that 50% of hemorroidectomies aren’t successful. So just live with it.
In December of 1993 I had discomfort sitting in my office and at 4:00 p.m. (strange how I remember the precise time) I called him and said, “I don’t care if 50% of the time hemorrhoidectomies are unsuccessful, I have pain sitting sometimes, so I need to see a surgeon.”
At the surgeon Dr. Floro's office, he was doing a digital inspection of my rectum and said, "You have a mass down here", without hesitation (and a rare fast comeback for me), I said, "You mean I have a mass in my ass?" Like most surgeons he didn't even smile at my one-liner. We scheduled a hemorrhoidectomy at Deaconess Hospital in St. Louis.
After the surgery, he told me I had a cantaloupe sized tumor in my rectum which was reaching from my anus to my tailbone. He later told me, after the pathology report came in, I would have to have another surgery to remove the entire tumor and any area around the tumor it was touching including my anus, and I would have a bag on my side permanently. Again instinctively, I made a remark of "oh shit!" -- there was no pun intended, and there was again no smile. He realized the significance of the situation. I had only vaguely remembered hearing that there were people who had bags on their sides.
From Leiomyosarcoma to GIST
The original diagnosis was leiomyosarcoma and I needed to see an Oncologist. I got an appointment with Susan Luedke and she said "if you were my husband or brother I would suggest you go to Sloan Kettering or M.D. Anderson to see what they could do." Then she paused and said there was a great Colon-Rectal group at Barnes Jewish hospital, so I might want to see them first.
Dr. James Fleshman, my Colon Rectal specialist, must have gotten some of the samples of my cancer from Dr. Floro for the Barnes Pathologists to look at. The diagnosis was changed to Gastrointestinal Stromal Tumor cancer (GIST). Apparently the two cancers are similar in make up and in rarity. There was almost nothing known about the cancer. I was given a photocopy of one sheet of paper from the Mayo Clinic that listed both of these cancers. The paper indicated only surgery was possible and the results were promising if the tumor was small. All of the adjoining area had to be removed.
I delayed the surgery for a few weeks since our oldest son was getting married. In late January 1994 I had my colonostomy and had the wide margin’s taken as necessary. My anus was removed and my tail bone and first vertebrae.
27th Person ever Diagnosed with GIST
The Barnes Jewish Hospital is part of Washington University School of Medicine and is constantly rated as one of the top ten hospitals in the United States. My surgeon, I have been told, has been listed on the list of the top 100 surgeons in the country. As a teaching hospital they had the latest of everything including information. I was told I was the 27th person in recorded history to have been diagnosed with GIST. I remember telling him, “I guess they will not be able to afford to do any research on it then.” Just think of the infancy of some of our research, we now estimate 5000 people get GIST every year. I’m sure that figure didn’t start just because they now have a better chance at a more accurate diagnosis. I wonder what cancers were blamed for all of those annual 5000 people who died from GIST and had a very rare chance of surviving the unknown cancer. The timing was at the infancy of the internet. Our Doctors had almost no real chance of sharing in any quantity the information we now can. Although the information explosion is so immense no man or Doctor can even begin to keep up, at least now there are web sites they can go to get information so much faster. More on this later.
My follow up consisted of an annual CAT Scan. My third CAT scan found tumors on my liver. I have since found out that most people died after one year of diagnosis of GIST. Dr. Fleshman did such a good job with my colostomy surgery it took three years for it to metastasis and probably was instrumental in saving my life. In January of 1997 I had a liver resection and over half of my liver removed. In February 1999 I had a bowel blockage as part of my small intestine had looped and stuck to my liver resection scar tissue and I had to have exploratory surgery. Unfortunately, my bowels did not like all of the attention and they shut down. I was in the hospital for 19 days and lost 28 pounds (temporarily unfortunately).
Ostomy Support Group
When someone has the prospect of having a bowel or urinary diversion (a bag on one's abdomen) it can lead to depression. The United Ostomy Association’s local chapter has trained callers to call on people with a new ostomy. I had a caller visit me and it was reassuring to see people can have a very normal life with an ostomy. I trained to be a caller so I could help other Ostomates.
Dr. Fleshman was very active in this organization and when he had another patient with GIST he recommended I be the caller. I was pleased to do so and developed a close relationship with Gary and his wife since we had the same rare cancer. I met them at the hospital after his surgery and at his home.
My CAT scan in September 1999 indicated my cancer had metastasized to my liver again. This time they went in and used cryogenics (freezing the tumors).
Gary’s cancer had returned to his pelvic area and he was facing radical surgery. He told me of a web site, and so did a friend of mine, with clinical trials on it. I went to the site and found that Dana Farber Cancer Institute was testing chemotherapy on GIST. Obviously, there were more than 27 of us. Prior to his surgery his Physicians said they could give him that Chemo before his surgery to see if it would shrink his tumors. I called Boston and got an appointment to meet with my human Savior, Dr. George Demetri. When I got there he said I was not a candidate for the chemo trials since I just had surgery and was cancer free. I told him there probably are molecules of cancer floating around and since it had come back twice it will again. He agreed, but said it would not be a valid trial because they would not be able to tell if the chemo worked or if I was cured already. Thank God I did not get on that trial.
When I returned Gary went in for his surgery and made it through, but got an infection and died in ICU. It was a big blow to me for I knew somehow he would beat it, but all we had then was surgery.
At Gary’s wake the reverend who did the eulogy, said Gary told him before he went into his last surgery that if he made it through this he would use clear wood in his woodworking hobby and he would go fly-fishing more.
Well I can’t help Gary with his woodworking, but I can take him with me fly-fishing. We have been going a lot since his wake. I decided since I love fly-fishing, what am I waiting for? Every time I get into my canoe and shove off into the current I say, “this is for you Gary”, and he still gives to me. There are always three of us in the boat, my fishing partner, me and my friend Gary.
STI 571 Clinical Trial
A year later I had ten tumors on what was left of my liver. My cancer had metastasized in three years, then two, and now one, and I was inoperable. My doctor said I will have to find something else, and I did. I went back on the internet site and found out that Dana Farber had a clinical trial for GIST on a medication called STI 571. I had my Oncologist call to find out about it and he said to call immediately to get on the waiting list for the trial, they have had some good early signs of success. I had previously brought my Cat Scans and samples of my cancer to Boston. It was good luck I did not get on the previous chemo test that might have precluded me from being a candidate for the STI 571 trial.
My appointment was in August of 2000 and I went on a standby list. On November 30 of 2000 I got on the study and I was somewhere between 60 and 65 in the number of patients on the trial to start taking the drug made by Novartis Pharmaceutical called Glivec (the FDA made them change the name in the United States to Gleevec when it was approved). In the three months of waiting my tumors doubled in size. Within one month after taking Gleevec they shrunk approximately 25%. I am still on the trial and what they see now is so small they think it might be scar tissue.
I take 600 mgs. of Gleevec every lunchtime. I have weighed 250 pounds but am now down 30 pounds so I believe my dosages were correspondingly larger. By the way, a good way to remind yourself to take your pills everyday is to set the alarm to ring on your cell phone. Almost all of us carry a cell phone today.
My side effects have been edema, particularly in the eye lids, and muscle cramps. From time to time I have had rashes or other side effects, but not of great consequences. My edema got so big in my eye lids that it was interfering with my sight. Dr. Philip Custer, an Ocular Plastic Surgeon at Barnes Hospital did an eye lid repair job on me and I may have been the first in the country with Gleevec induced edema to get it done. It worked out beautifully. They do not usually operate on swollen areas on the body. My insurance company paid for it. After I realized the Gleevec was working I had my knee replaced in 2001 that had three previous surgeries and I was walking bone on bone.
|Les Anderhub enjoying his "extra Life" with a nice smallmouth bass caught off the dock (and released) on a Canadian Fly-In fishing trip. He is wearing waders because he normally fishes from a float tube.|
I tell everyone I am the luckiest man on earth. I was inoperable and now I am in my eighth year of my “extra life”. Who knows when and if it will return? I know I have seen four grandchildren I would not have otherwise. I go to Canada fishing every year. I even get my wife out to swing dance occasionally. The most important lesson I have learned, I’m confident, is what is really important in life: relationships. I ask God all the time why has he spared me and what does he want me to do to earn this time of my extra life. I was afraid I would alienate cancer patients who may not be as lucky as I, but then at the cancer support group at my church I think I got my answer after we shared our different cancer scenarios. A lady, who was battling breast cancer, got it under control and had just been diagnosed with ovarian cancer, came to me after we finished and gave me a bear hug and said I was her inspiration.
My belief is with modern medicine and the internet anything can be overcome and in the very least give us hope and the positive attitude to fight ever second of every day.
What does it really mean to have an extra life? How do you measure the value? There are some subtle, yet wonderful examples I have of how important is every extra year. Forty years from now seven of my grandchildren will be able to show their children pictures of their grandpa with them. If I live a little longer they will even be able to remember me and tell their children what we did together. My parents came from Switzerland and my dad’s dad remained there. I never got to see him and it has always felt like a loss to me.
We have been blessed with four children. My extra life enabled me to see a son get married and I was here to give a daughter away at her wedding. I was in their wedding pictures. I suspect they are happy that their children and grandchildren will see their whole family in their pictures years from now when they show their children.
A very practical benefit from my extra life is I could work longer and make it easier on my wife in her retirement. It also means it is easier on us as I survive to enjoy doing more things, since I was able to earn more, and be here to enjoy the fruits of my labor.
Who knows if it is because of my extra life, but our children call regularly and enjoy talking with us. They may have done it any way, but I suspect with my history and the threat of my cancer’s reoccurrence they are more highly motivated to communicate and visit with me. I know I am thrilled with the calls and visits. Love is easier to display when one survives a cancer. Two of our children live over 600 miles from us. I relish the time I can spend with them and their five children. Four of our grandchildren live in our city.
When someone asks me how I cope with cancer, I tell them, in some ways life is better. I know how to “smell the flowers.” Things that seemed important prior to GIST are insignificant in many ways. I believe I now know what is really important in life. The following paragraphs are an edited version of a letter I sent to the Dana Farber Cancer Institute to thank them for their life giving support to me:
“Hello, I am the richest man in the United States and I wanted to share some of my wealth with you. My wealth is immeasurable. It is impossible for me to convey to you or anyone the depth of its value, but I will try.
This past weekend I was leaving our son’s house when his 23 month old daughter realized I was going and she ran full speed at me and flung into my arms. As I caught her and picked her up I almost dropped her because I was about to melt. She wanted to give me a kiss and a hug goodbye. It was unabashed love for an old man.
A few weeks earlier I was with her six-year old brother at a local fishing club that has one of our Ozark streams running along its’ side. We were walking on a gravel bar next to the river approaching a rapid. I yelled for him to stop because he was too far ahead of me. He turned around and yelled back, “Grosspappi, you walk slow like an old man.” I laugh every time I think of the honest remark of a young boy sharing a day with his grandpa.
Sharing a day with his grandpa, huh, that is only a small glimpse at my wealth. Many may think of wealth as money or land or stocks. A dictionary definition of rich is, “having high value or quality.” I really know what it means to be rich. I have accumulated my new found wealth over the last decade. It started on November 30, 2000. That is the day I began my clinical trial sponsored by Dana Farber Cancer Institute. I had experienced six surgeries in the previous seven years before I found Dr. George Demetri and Dana Farber on the internet. I am now cancer free.
There is no way I can repay Dana Farber. How much is my life or any patient’s life worth? To get that answer you would have to ask my wife, four children or my nine grandchildren. You would have to ask the thousands of patients who have had their lives extended and you still could not understand the value of our riches. You would have to understand the change that comes over you when you realize what riches really mean. I was a walking dead man and in two days from now I am going to get in a canoe with one of my sons and we are going to spend a day on a beautiful stream in the middle of a forest with wild flowers, eagles, as many smallmouth bass we can catch (and release). I will enjoy the little bugs, the birds, the different rapids, all of the sights in the water, the bluffs, the sounds of nature, the conversation with my son, the green of all the trees, the warmth of the sun, a lunch on a gravel bar, the tug of a fish on my fly rod, maneuvering my canoe around an obstruction,
and I will thank God, George Demetri and Dana Farber.”