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My 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 hemorroidectomy operations aren't successful. So just live with it.

In December of 1993 I had discomfort sitting in my office and at 4:00p.m. (Strange how I remember the precise time) I called him and said, "I don't care if 50% of the time hemorrhoidectomy's are unsuccessful, I have pain sitting sometime, 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.

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 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 margins taken as necessary. My anus was removed along with my tail bone and first vertebra.

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, as 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. The information explosion is so immense no man or Doctor can even begin to keep up, although 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. 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 38 pounds (temporarily unfortunately). 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 new a 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 tumor).

Gary's cancer had returned to his pelvic area and he was facing radical surgery. He told me of a web site with clinical trials on it,and so did a friend of mine. I went to the site and found that Dana-Farber was testing chemotherapy on GIST. Obviously, there were more than 27 of us. Prior to Gary's 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 back then was surgery.

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 numbers 60 and 65 in the number of patients on the trial to start taking the drug made by Novartis Pharmaceuticals 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 am now down 25 pounds so I believe my dosages were correspondingly larger. By the way, a good way to remind you 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 eyelids, 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 eyelids that it was interfering with my sight. Dr. Philip Custer, an Ocular Plastic Surgeon at Barnes Hospital, did an eyelid repair job on me and I may have been the first in the country 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.

I tell everyone I am the luckiest man on earth. I was inoperable and now I am in my seventh year of my "extra life". Who knows when and if GIST will return? I know I have seen four grandchildren I would not have. I go to Canada fishing every year. I even get my wife out to swing dance occasionally. The most important lesson you and 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 and got it under control, had just been diagnosed with ovarian cancer. She 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 at the very least give us hope and the positive attitude to fight every second of every day.