LISA’S COLONDAR BIO
Being diagnosed with advanced colorectal cancer is extremely serious, which is why Lisa Dubow is serious about her role as a colon cancer survivor, educator and community activist.
A year after being diagnosed with stage III colon cancer, Lisa was told that her cancer had spread to her liver and lymph nodes. She has had multiple surgeries, has participated in several clinical trials, has undergone every available treatment and continues to research and participate in emerging therapies. Lisa spends much of her time as a patient advocate and volunteers for various cancer organizations. She has also established the Lisa Fund for research to benefit late stage cancer patients.
Lisa shares her story with anyone who will listen in hopes of educating others and saving lives. She is making a difference in the world.
LISA’S STORY AS TOLD BY LISA
My story starts when my son was 11 1/2 and I was a teacher, probably 1996. I started losing weight, and even though I exercised a lot, the other teachers started noticing that I was a bit white and my skin wasn’t the right color. I was so tired and I kept going to the doctor and saying that there had to be something wrong because I knew I wasn’t crazy. I had this instinct that there was something wrong and that I wasn’t crazy, but the doctor labeled me as a hypochondriac and wanted me to see a shrink.
I had been diagnosed as extremely anemic and even got prescription iron. After about a year the doctor wanted me to see a shrink. People at work, who I considered my friends, were concerned. I was losing so much weight that my family thought I was lying about eating; they thought I was anorexic. At work I overheard that they thought I had AIDS and didn’t want to tell anyone because I thought I would lose my job. I was a single parent at the time, and I was dating. I got a chance to hear the way humanity acts and how people can be, and it was devastating. I thought that was horrible.
In early May of 1998, when I was 42, I finally saw blood in the toilet and got a colonoscopy. The HMO did not wait; they had me on the operating table having surgery the morning of Mother’s Day 1998. I was able to have a resection, and was in the hospital about a week and recovered from the surgery. They were able to do a resection and I went on the basic therapy which was 5FU and Leucovorin.
At that point, I made a decision to do what I’ll call mental health cleaning. I never went back to work, and I asked the teachers to not come by. I asked someone to get my personal things, and decided that I needed to be in a life with different kind of people. In between the 3rd and 4th rounds of chemotherapy, I was married – I gave my husband the option to not marry me, but he did. The wedding was really small. If you were blood-related, you could come. It was hard. Even my best friend wasn’t there. People were crying. It was weird. I didn’t wear a traditional white wedding dress, I just went and picked a pretty dress off the rack, it was August and 105 in my aunt’s back yard and I said everybody wear shorts and t-shirts. It was one of those times when you have a disease and you just adjust to it. After I said I do, I took a nap. We went to Laguna Beach for a few days because I had to go right back into chemotherapy. My son promised me that when he made it big he would throw me a big wedding.
At that time I was a good little solider. I did chemotherapy and did whatever the doctors told me. I knew very little. I thought the cancer was gone, but now I know that it was never gone, it was just sleeping. About a year and a half later, when it woke up it came back with a vengeance. Unfortunately, the cancer did go to my liver in 2001 and all that showed up on a PET scan was that it was in my liver, so we were going to do a liver resection. Once they opened me up they found more, but those nodes didn’t show up on the PET scan. I didn’t know why, but now I know that machines are different; the old ones are not as sensitive.
They opened me up, closed me up, and told me to get my affairs in order. But I said no, that I wasn’t ready for that. I found some doctors who were experimenting with radiofrequency ablation (RFA) and I did that and it worked. For the cancer that had spread under my pancreas I did 5FU, Leucovorin and CPT-11, which worked well enough so that it couldn’t be seen on a scan, but by then I knew enough to know that the cancer was still there somewhere. At that point I was still with the HMO but I was getting out of it and switching over to a PPO. The HMO just wasn’t for my personality.
I was lucky enough to see a really bright guy who was in his own practice who took me on for no charge so that he could follow my case until I could switch over to the PPO, and I’ve been with him ever since. I’ve been on 3 clinical trials, and I’ve been on different chemo combinations.
The first trial I did was a phase I trial for a vaccine called Canvaxin. Unfortunately it’s not out there and available, but it was working with some patients. But again, I learned the meaning of the word success, which in the clinical sense means the cancer is not growing. But I think it was successful because it was a vaccine and it boosted the rest of my immune system. I did talk to some of the doctors over at the company, and off the record, the scientists & the people leading this said, sure the basic philosophy is that it boosts your immune system to fight the cancer; clinically it wasn’t successful with you, but was it successful for you to help you keep fighting. We can’t prove that.
It was 2002 and the next trial I did was for a drug in pill form called SU011248 (Sutent) that was in phase I trials for gastrointestinal cancer. I did that trial from November 2002 to April 2003, and it worked for a while but then my cancer had some growth. By that time Oxaliplatin had been approved, so I went then on the 5FU Leucovorin and Oxaliplatin regime. The doctors always find it interesting for me because I’m a runner and exerciser. The clicking of the pump would drive me nuts, but otherwise I was fine on the chemo until two days afterwards, when I would feel like I had been hit by a truck. Even when the neuropathy kicked in, I still went running. The biggest concern of the doctors was that I would trip and fall because I couldn’t feel the concrete and I couldn’t feel what I was running on very well. So I continued to exercise, but the only time I hurt myself was when I put something in the microwave and took it out. It was hot and I didn’t feel it burning my hand, but at least I wasn’t in pain!
That chemo regimen worked pretty well for me, and then in September 2003 went on Xeloda. I was really fine until May of 2004. Until then I considered myself NED (“no evidence of disease”). I never considered myself cancer-free or in remission – I don’t use those words because they don’t make sense to me and I have to use words I can live with. Using NED keeps me on my toes and keeps me in the research and gives me the energy to keep doing education. In May 2004 doctors found a node in my liver and I went back on Xeloda, but the tumor in my liver was still growing, so I went on 5FU, Leucovorin and Avastin.
In between all of that, I wanted to check out my other organs –because I’m a female. They did a comb biopsy in my uterus to check for uterine cancer and I was told that I had unusual cells there, which was frightening because you think, “Oh great, now I have cancer there.” But my doctor just said that there is so much we didn’t know and that I had been on so many treatments, that I didn’t really have cancer but my cells weren’t perfect, and that my cells probably weren’t perfect in a lot of parts of my body. With a lot of drugs, what happens in the long run just isn’t known.
After all of that I went to Italy and that was fun; I got off everything so I could just enjoy myself. When I came back, went back to 5FU, Leucovorin and Avastin but it wasn’t working; the liver was still not responding. Because of where the tumors were, the doctor couldn’t do a resection.
I had RFA on my liver again on January 6, 2006. I had six lesions and got RFA on four of them because doing all six would have been too risky. Right after that I went on Xeloda for the liver lesions, but now I’m on Avastin and Erbitux – no chemotherapy, just tumor-targeting drugs and I’m waiting to see what happens.
When Erbitux was in clinical trials, I wanted to get myself tested so I applied to get in. It wasn’t necessarily to get the drug, but to see if I had EGFR, and I did. Of course it’s working now on people who don’t have EGFR, which makes me take a step back and think that once again, the more I learn that they know, the more I learn that they don’t know, and the more they need to know. Then I go to the pharmaceutical companies making money; do they do things on the side, I do things on the side too – complementary herbs and vitamins, like selenium that is in clinical trials in Britain for colon cancer. You can get it over the counter here, so I contacted the company who is running the trial and I was able to get what they are using in the trials. I wanted to get what they are using in the trials. I’m not a scientist, so I don’t know what the difference might be. I don’t want to go public about the other things I’m doing b/c people look at me and think I’m doing so well and I don’t want to give anyone false hope. I don’t know why I’m doing so well.
I’m very lucky that the doctor I’m under takes such good care of me. I’ve done a tremendous amount of research before I even ask a question, and sometimes he takes things from me to look into, so I’m very lucky. He brought me in to speak to interns at UCLA with him. I don’t know how he behaves and how his staff behaves with other patients, but with me he’s great.
My husband married me knowing my situation, but he has not been dealing with this disease very well. When I had liver surgery, he never even visited. The nurses thought I was hallucinating and asked my sister if I was really married. At the CCA conference in 2004, I sat in on the caregivers forum because it was the easiest way for me to understand what my husband was going through. His way of dealing with it is just to not deal with it.
Now eight years later, he was just so afraid of losing me. I had friends who said I needed to get a divorce and I said I’m not going through this and a divorce. So I switched my attitude so that it’s not my problem, it’s his problem. We all use defense mechanisms and mine happens to be a big brick wall.
Last weekend, we just really talked and I let him know that I stood up at a conference and without saying his name I had an absentee husband even though I’m married. He would do his own thing during the day and come home.
He’s never seen me speak publicly. He’s read me some of the interviews, so I think we’re in a transition stage right now. Throughout this, my son watched this and he and I had talks and I said, “You know what you’re seeing?” A marriage where someone is part of a person, but doesn’t know how to deal with another part, or can’t deal with death.”
Did any of that have to do with my being in the spotlight? My best girlfriend said, “Your husband is pretty vain and you get some of the spotlight and he’s probably maybe jealous of it.” I said, “Fine. I’m not doing it for the spotlight. I’m doing it for healing and for the people I’ve met.” When my son looks at me and says he’s proud of me, that’s not why I do it, but that means a lot.
I haven’t heard it that much, but I have heard that when women get diagnosed the divorce rate is really high and when men get diagnosed the rate is really low. I just didn’t have the energy to deal with it.
Something I want to add is that when people ask me what is my best medicine, I say it’s my son. He’s really good medicine. Our relationship is a good one and when he’s around, I feel better and I do better. That may not be true for everybody, but it is for me. My son and his friends’ families all had their colonoscopies, and I know I have reached a lot of people. I do this, depending on how I feel, I do this full time – bringing attention to colon cancer full-time. That’s what I’ve dedicated my life to.
UPDATE: We are sad to share that Lisa Dubow passed away in July 2007.