Multiple Myeloma Survivor
Patient credits clinical trial as lifesaver
Type of cancer: Multiple Myeloma
Date of diagnosis: April 1988
Current date: October 2009
Current status: Remission - 6 years
1. How was your health when you were diagnosed?
My regular, everyday family doctor told me that outside of that cancer diagnosis I was pretty darn healthy.
2. Where were you initially diagnosed?
I was actually diagnosed by a hematological oncologist who had been my mother’s oncologist. (She passed away in 1994 from ovarian cancer.) I had gone to my regular family doctor first because I was tired from working 75 hours a week, and my back hurt. He recommended more exercise, and was initially hesitant to look much further because I was young and healthy. I had to push him to do the blood tests. They found some issues in the blood work, which caused them to assume there might be something was cancer related. Eventually, they ran some leukemia panels and came up with markers that were abnormal. At that point, I went to the oncologist, who diagnosed me with multiple myeloma.
3. What treatment was initially recommended?
My oncologist initially recommended the standard chemotherapy protocol, as there was nothing specific for multiple myeloma or leukemia at the time. I had a course or two, and there was no significant change. He then found a clinical trial that he wanted me to try.
4. Did you participate in a Clinical Trial? If so, which one?
Yes because it quickly became apparent that my best hope for survival was a clinical trial. One of the many miracles in my life is that I lived around the corner from the clinic where this trial was based. It was good thing, because from 1999 until 2003, I was at that clinic six days out of every 11.
I enrolled in a confidential clinical trial in 1999. It involved a three-pronged program with the goal of building up my body at the beginning, before we beat it down with the chemical poison on the other end. It included an experimental drug, an hour of exercise every day – no matter how I felt – and an extensive nutritional program, where I ate 4000 calories a day, with strict directives as to what I had to eat each week.
It was initially a boot camp experience at the clinic. They had me come in for an initial interview and to record baseline readings. Then there were classes on nutrition and fitness awareness. A couple of people dropped out after they attended the nutrition class. We had to completely change our lifestyles, and when you are 70 years old, which is the typical profile for multiple myeloma, that can be the hardest part.
If I had continued the treatment I was on, I had maybe two years to live. Before I was accepted, I had to agree to adhere to all aspects of the trial, but I felt like I was literally hanging on to the Trial Director’s leg saying, “Please let me in.”
5. Do you take any nutritional supplements? If so, what do you take?
Today I use a product called Complete Nutrition – from the Optimal Health Systems Company. It’s a powder that you mix with juice, or make into a smoothie. You could eat it with a spoon, but you’d still be hungry! I take this, because if I fall off the wagon nutritionally, at least my body has something that will help it to continue to function properly all day. I also take a multi-vitamin and an anti-oxidant.
6. Did you change your diet? How is it different from before your diagnosis?
Diet was one of the three building blocks of my clinical trial. Fortunately, my diet was healthy before I started my treatment. There was a list of seven things that I could not eat – high fructose corn syrup, white sugar, white flour, preservatives, vitamin C, dairy or carbonation.
There was also a list of things I was required to eat. By the end of every week, I had to have eaten all the following food: four servings of brown rice, four servings of broccoli, seven servings of tomato or tomato products, nine bananas, two servings of salmon and four servings of green tea a day. I also could have anything with soy. Much of this food was truly an acquired taste, but I knew I had to eat it or I didn’t get to “play” in the trial.
I’ve worked pretty hard to stick to the same principles, but I will indulge in dairy from time to time. Fortunately, some of the things that I couldn’t have during the trial, I had quit eating years earlier. Carbonated beverages are a good example. I figured out 25 years ago that it was really bad for my skin, so I quit drinking them. Generally speaking, all of the restricted foods have been easy for me to go without, with the exception of dairy.
7. Did you change your exercise program? How is it different from before your diagnosis?
The trial required that I had to exercise at least an hour a day every day, which was different than before I got sick. Prior to my diagnosis, I was working with a trainer three days a week, and once I enrolled in the trial, I continued with that same regimen. I just had to add activities for the other four days each week.
Now, I walk every day with my dog, but I don’t really consider that exercise. I still work with a trainer each week, do yoga a couple of days a week and I’ve actually started running on the treadmill twice a week to lose that last five pounds brought on by being 49 years old.
8. Did you change your stress reduction program? How is it different from before your diagnosis?
I quit my job. Do I think anybody else on the planet could just quit his or her job? No, probably not, but that was the only area where I had any stress. I wasn’t married. I didn’t have kids to worry about. That was truly the only area of stress that I had. As much as I tried to cut back from working 75 hours a week, and have other people help me, it wasn’t enough. I had to quit.
My life is very different than it was before I was diagnosed. I consider myself the luckiest girl on the planet. I keep my stress on a completely different level. I volunteer. I work on small work projects. I help my terrific dad. I know that whatever I am experiencing right now, which might have the potential to rock my world – it could be so much worse. I still pray. I hug my dog a lot. I hug my dad a lot. That’s what I do for stress reduction.
9. Are you currently considered to be disease free?
10. How long have you been disease free?
Since February 21, 2003
11. What do you think is the most important thing you did to combat your cancer?
The most important thing I did was to have a positive mental attitude. I think I’m really funny and I’ve always tried to find humor in all that I experienced.
In addition, I had to lower my stress level, so I quit my job. Eleven months after I resigned, I went into remission.
12. Brief Additional Narrative
I am truly a “miracle girl” walking. Multiple myeloma is a relatively rare cancer that affects the blood plasma, and is usually found in 60 to 70-year-old men, so I did not fit the profile. When I was diagnosed, I was told that I probably had less than five years to live. My response was, “That’s not possible! I’m only 38 years old!”
Having the chance to be in my clinical trial saved my life. Two years ago, I was given some wonderful news when I received a letter from the clinic that said they were closing the trial. It had been wildly successful and it was no longer necessary. The treatment had become mainstream. Next to the day that I went into remission, this was the most significant moment of my life – to know that other people will be well – and I helped that to become a reality in a small way.