Q&A with a Lung Cancer Survivor

Q&A with a Lung Cancer SurvivorGrateful. That’s the word Susan Nelson, a 52-year-old Temecula teacher, uses over and over again in conversation. And no wonder — Nelson has successfully battled lung cancer for 17 years, in the process participating in many of the most experimental drug treatments. We were first introduced to Susan’s story by a July 28, 2002 article in the Los Angeles Times: In 1989, she was diagnosed with bronchoalveolar carcinoma, a slow-growing lung cancer. Doctors removed a portion of her right lung, but the cancer recurred in 1994. Described as “an athletic woman who never smoked,” Susan was, at the time of the article, enrolled in a clinical trial testing the effectiveness of Iressa. More than three years later, reporter Emmanuelle Richard caught up with this upbeat and inspiring woman, and talked about her latest clinical trial, for a lung cancer vaccine.

Science Blog: Susan, how have you been since the Los Angeles Times article in 2003, when you were taking Iressa?

I had to change regimen, unfortunately, because Iressa was such a comfortable drug to take. My body responded remarkably to this drug. When you live for a long time with cancer like I have, you learn that there are certain treatments that will work and buy you time, and that certain treatments will not work. Iressa happened to be a treatment that my body truly responded to. For the first year, it really responded where it diminished an immense amount of my tumors: up to 95% of some of them. Especially the first month to six months. It was truly miraculous. After the first year – and this is very common, unfortunately, the body becomes… I believe the word is “immune” to certain treatments. After the first year, it did keep the cancer at bay: the cancer was not disappearing as fast as it once did but if I remember correctly, it was not necessarily growing either. It just kind of kept it under control. But soon thereafter, and I don’t have all my calendars with me right now, I believe I began Iressa in the summer of 2000, but it may be 2001.

In any rate, in August of 2004, unfortunately, we did stop the Iressa treatment. And it was simply because my body stopped reacting, and the cancer became very clued-in on what was going on, and it did not work like it once did. As a cancer patient though I’m so, soooooo grateful for the creation of this drug, because at the time I was taking it, the cancer was moving very very quickly in my body. And from the time I took it and seven days later, I could see not only the cancer symptoms diminished, but you could tell it was truly working on me. My breathing was better; it was a miracle. It gave me extra time as a human being and comfortable quality days.

So in August 2004, we had to shift gears, and about a week after I stopped Iressa, I went on a chemotherapy treatment, and I did that for about six months. And then that stopped last November or December. We let the body heal for a while, and last April, we found out that, unfortunately, the cancer was moving along very quickly again. So I’m currently involved in a clinical trial that’s based out of UC Davis Medical Center in Sacramento. It was one of the options that Doctor Natale and I … one of the options I chose. I’m a non-smoker, and I’ve been living with this lung cancer now going on 17 years, and unfortunately, the longer you live with this kind of disease, you also have less options. We ended up taking this option.

I underwent lung surgery on June 9. They went and removed a portion of the tumor that included live cancer cells. And they sent these live cancer cells to a facility in Memphis, Tennessee called Cell Genesys. And they created a vaccine for my cancer cells called Gvax. I’m currently going up this week for my last sets of vaccine. After the surgery it took quite a little bit of time to heal and recuperate, and at the same time the cancer vaccine was being created. And late in August of this year, I started my first round of vaccine, and it’s now my fifth time going there. I stay in Sacremento for 2 or 3 days. They inject the vaccine right under the skin, and they do the left side of the body one time, the right side another time. And the hope is that with these injections, my immune system will kick it in overdrive; that the body will hopefully start to fight some of the cancer on its own.

This procedure has occurred before but from what I understand, they haven’t used it on lung cancer. This trial is only accepting people like myself with my type of lung cancer: we tend to be non-smokers, it’s called BAC, non-small cell lung cancer. It’s usually women, we’re almost all non-smokers, and I’m going for the last set of vaccines this week. And I’ll go back up North to see if this process has helped me or not. It’s a bit of a longshot, this may or may not work…. Whereas Iressa, I don’t know if it was that much of a longshot, but it worked on me. This is a little more of a longshot, but when you get to the point where I am right now, having lived with this for so long, you end up taking risks. Cancer patients do this to simply extend our lives. (She laughs.)

That’s where I am…. How do you like that? (Big laugh.)

If you saw me you’d never know: I’m just bouncing around (laughs), but I have my moments where I cough and I show some of my lung cancer.

I really miss my Iressa. The side effects were so minimal: a little rash, and my hair got real dry, but things so small in the big picture. I’ve always been a very positive person, but when I started taking Iressa it was nice because I started thinking in terms of future again. I just knew that because of that drug, I was going to live longer, which I did. That’s the hardest thing with cancer, because often it depletes people as far as their chances of living a longer life. And it’s very depressing for a lot of people. They don’t see many years ahead of them.

Iressa has been often described as a disappointment in recent media articles., How would you call it?

You know, it’s a crapshoot, and what I mean by that is … there’s such a gamble often, and you look at your standard chemo treatment and you see people respond so well to certain treatments for years, but in the meantime, they’ve been really debilitated. Some people live a long time with cancer, some people die right away, but nowadays people are living longer with the disease than they used to. And Iressa is one of the drugs that has allowed cancer patients who have responded to it to live their lives fuller for a longer amount of time. I’ve learned that those people who go through any type of life-altering challenge like this, they give so much back to life and back to the world.

I hear that some patients who tried Iressa successfully for a while, and move to something else after it stopped working, have the option of a high-dose Iressa regimen. Have you tried that yourself?

We tried different things with me, in the last six months when I was on it. We went with the higher dosages, we tried skipping certain dates. You experiment with it a bit to trick the body. Sometimes it worked a little. The body is really a miracle, but also very unpredictable at times. I know that there are those different avenues. I started journaling my entire life in 1989. I was such a health nut — I was a dance instructor, it was the LAST thing I ever and no one would ever expect I would come down with: a rare lung cancer. Because my lifestyle was so healthy. For all these years, I’ve kept journals, and then I wrote a book — I haven’t published it — through the years to help people learn how you live when you receive the news, how you live with this disease. More people are getting cancer and the irony is more people are living longer.
It seems that cancer can become some kind of chronic condition, with people moving from treatment to treatment.

Exactly. And that’s the hard part of it too. They’re going from treatment to treatment, and the roller coaster ride emotionally is very hard. Your hopes are high and then you’re not sure of the what-ifs, and you don’t know how you’re going to react. Ever since I’ve stopped Iressa, I’ve lived this roller coaster, those uncertainties.

Have you tried Avastin?
I haven’t tried it yet, but who knows? (Laughs.) We’re hoping that my body is responding to this Gvax vaccine.

I’ve put my body through a taxing experience with this surgery, and at the same time the vaccines are not invasive, they’re not difficult to do. It’s treated as a science experiment: I walk to the cancer center, and the technicians go inside the freezer and get the portion of my vaccine. They take quite a little bit of blood and they’re monitoring my immune “target” — I think that’s the term they use — so they’re monitoring my immune system. Cedars Sinai is keeping an eye on what I’m doing, and even though the trial is taking place in Sacramento, Cedars Sinai is still my home base, and Dr. Natale is still my doctor.

After this process, I don’t have any idea what’s in store for me. That’s sometimes the scary part about being a cancer patient. You go through these different humps, and you’re in a rhythm with one treatment and you know what to expect, and eventually that treatment will end. Iressa worked so well that it was so hard to pull away from it (laughs). But I’m soo, soo grateful, because to this day I can do more now than I could do around the millenium, when I could really feel the effects of the lung cancer and how it was starting to catch up with me. I knew my days were numbered, I just didn’t know how many. I kept moving on in life and moving forward, but I could tell that I couldn’t do what I used to do.

I’m very physically active, but after this lung surgery I can’t do what I used to do, and it’s hard for me because I’ve always been very active. But it’s that activity that I know has allowed me to live this long.

But, I mean, you’ve recently had this pretty invasive surgery, and as we speak, you’re driving on the freeway?

Oh yeah (laughs), and I’m working … I still teach. I’m no longer in front of a full classroom. I still talk to groups and speak to cancer symposiums, but I teach in a small independent high school, and the students are on a one-to-one basis, and it’s more suitable to my health. I’m learning to make adjustments to help my health. I still lift weights and work out, and I’m 52 and I’m still pretty strong. But I don’t ride my horses anymore. It’s more the surgery than the cancer. I used to do a lot of hiking with my Labrador retriever, and I don’t hike anymore, but I still walk. I’m busier with my treatment but I want to help people to continue their lives after they hear that they have this disease.

I have to pull up at the mall: they have this special on Clinique products!

6 COMMENTS

  1. Hope you are still out there. My 2 year anniversary is tomorrow. I did the lobectomy but no chemo. Not many of us out there. I’m doing great. You hang in there.
    Jerry

  2. 1 year later/.tumor gone(size of an egg roll)2 pet and ct scans later…no sign of cancer.”that they can see”….going for the third scan on dec.10.2007.Diagnosed last year…3 days before Christmas.Feeling well. Taking an antidepressant for now. Never took more than an asprin before. Found myself fatigued and breathless. Went to Dr. She prescribed the antidepressant and ” Spiriva”. Not sure of the spelling. It worked like a charm. Tried albuterol as well.It doesn’t work for me. The spiriva made a HUGE differance in the way I breath and the energy I now have. Granted …I am not great…but I am so far better off than I was. Have been able to work the entire time since being diagnosed. Had chemo and all the radiation they could give my lung.2 lymph nodes involved. Clear as well.A few days to go before I find out if I will be ok for a little while longer.Every 3 months I need to get checked. Every 3 months I get to live.Lung cancer at this stage is not where you can plan the future.However….appearantly you and I have beaten the odds. Especially ME! No idea why I am feeling as well as I am…nor do I know why I am “without cancer” at this point. 3b is a death sentence. I am still here. What does that tell you? Trust me…you are NOT an anomaly. Certainly not with 1b. Try still being alive with a cancer that I should have died from …..months ago. By all means..feel insecure about you future if you want. You really shouldn’t. You have the world by the !!! on a down hill swing. I have replied to your e-mail. You had asked about lung cancer survivors. You were feeling alone. Don’t feel alone. Feel good that you have a much better chance of staying alive for a much longer peroid of time than I do….I am not trying to be cruel. I am simply stating facts. …You call yourself a “cancer patient”. YOU ARE NOT!!! You are a cancer survivor!!!. I will tell you that you are truely fortunate. You caught the cancer early. Go with the joy you still have in your life. Take care my friend.

  3. Go to the doctor. First of all, chances that it’s lung cancer, even with your symptoms, are probably small. There are other things it could be. But if it is, there are treatments out there. I know there are survivors – look at me! Plus I heard that Gerald McRainey (the actor) had lung cancer in later stages than mine and is fine now. I wish I could contact him, but oh well.

    Here is how I was diagnosed: I had a crackly laugh for a few years. They couldn’t actually hear anything when they listened with a stethoscope. In June of 2004 I noticed that in the mornings, after sleeping all night on one side, I would roll over in bed and when I first breathed in and inflated my lungs, I could feel a “stickiness” in there. I could hear it inside my own body, but my husband couldn’t hear anything. They couldn’t hear anything when I went to the doctor. The other symptom was I lost weight. It was only 4 pounds, but I weighed 118 pounds my whole adult life, and for no reason I weighed 114 pounds.

    They did an xray and saw an opacity, which was later determined to be fluid back up caused by the blockage created by the tumor in there. The CT scan revieled a “mass”, but it wasn’t determined to definitely be lung cancer until in September when they did a biopsy (which was inconclusive) and then put a scope down my throat, which was very conclusive. They diagnosed me on September 10, 2004 and on September 12, 2004 they surgically removed my upper right lobe and sewed me back up. They did four rounds of chemo in October.

    I lost my hair and my upper lobe, but life is better than ever now. It’s scary, but it’s beatable. Please go to the doctor. Delaying doesn’t help.

    I’m sorry it took so long to get back to you, I thought any replies to my post would go to my email, but they didn’t. I just happened to check this site today and saw your reply. Please email me directly – [email protected]. Or you can call me on my cell if you want to talk. I live in Fairfield, California. My name is Stephanie. Here is my number – 707-372-5642.

  4. hoIA cat scan randomly done for another reason found a nodule on my lung. I have enlarged lymph nodes, have shortness of breath, a chronic cough (for a few years now) and I’m scared to death to follow up with my doctor. How were you diagnosed?

  5. I’m a 45 year old very athletic, small, non-smoking woman. I was diagnosed with Stage 1B NSCLC in 2004. I had a lobectomy and chemotherapy. It’s been over 2 1/2 years. I know I’m an anomoly. I found mine in the very early stages. I feel very lucky. But I’m still a “cancer patient”, which I don’t enjoy. I’ve gotten very good treatment, but of course the doctors weren’t optomistic. They don’t quite know what to make of me. I haven’t found much support among other cancer patients. There aren’t many lung cancer survivors. If anyone out there is a lung cancer survivor like me, please email me: [email protected]. I would love some comraderie.

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