We are international

Many of you may already know the warmhearted Lee Grayson, a talented musician who performed at the IMF Ribbon of Hope ? Making a World of Difference gala in New York in October 2000. In addition to donating his musical talent to the IMF, Lee also gives generously of his time ? spending hours on the phone with newly diagnosed patients, sharing his story and offering encouragement. Diagnosed with myeloma eight years ago, Lee pursued alternative therapies before and during his conventional myeloma treatments. He has once again been generous in sharing his experiences with us.

Myeloma Today: Which alternative treatment did you try first, and why?
Lee Grayson: I was diagnosed with early stage myeloma by Dr. Phil Greipp at the Mayo clinic. He told me that, at the time, my immune system was controlling the disease better than anything modern medicine could offer. Dr. Greipp recommended to hold off on treatment and revisit the issue in 3 months. I expressed an interest in looking at some alternative therapies, and he did not discourage me. He did warn me to avoid high-dose vitamin C, since it seems to encourage myeloma cells to grow. He had a great approach and attitude and I appreciated getting some guidelines from him. I made contact with another myeloma patient who recommended I look into the Gerson Therapy; a diet that was supposed to boost the immune system seemed logical to me. I began by consulting a biochemist who was working with an oncologist on a nutritional program for cancer patients. It was similar to the Gerson program and included lots of carrot, beet, and celery juice along with herbs, and the addition of other vegetables over time.

MT: What was your experience with the Gerson diet?
LG: My myeloma protein levels remained the same, so it?s hard to say. I don?t know if it helped, but it didn?t seem to hurt.

MT: What was your next step?
LG: I had heard about a vaccine therapy in Tijuana from a woman with myeloma who felt that the vaccine helped her. I flew to Tijuana, and while there I visited the Gerson Clinic. Since I was already following a similar diet, and the Gerson people had no published or anecdotal data in their research department on the benefits of the Gerson program for myeloma patients, I didn?t follow up with Gerson. A consultant there told me that with myeloma, it?s as if you?re in a research study with only one patient enrolled: you. Instead, I chose to try the vaccine.

MT: What was your response to the vaccine?
LG: The vaccine didn?t cure the myeloma, but didn?t seem to make it worse, either. I did get big, red, irritated patches on my thigh where the vaccine was injected. I continued to drink the organic vegetable juice with the herbal additives, such as red clover tops and echinaecea, and I continued to feel fine and my myeloma level remained stable. I stopped the vaccine after 2 to 3 months in Tijuana. During that time I was also keeping in touch with Dr. Greipp and seeing a hematologist-oncologist weekly at the Scripps Clinic in La Jolla, California.

MT: What was your next step?
LG: I had read about Dr. Nicholas Gonzalez?s treatment for pancreatic and other cancers. What he said made sense to me and I went to see him in New York. I was at first rejected by Dr. Gonzalez because he didn?t think I would be a compliant enough patient. Through the intervention of a friend, he later accepted me for his Protocol.

MT: What did the Gonzalez Protocol involve? How does it differ from the Gerson Therapy?
LG: It is similar to the Gerson program ? juicing and coffee enemas ? but it includes high doses of pancreatic enzymes four times a day and lots of pills as well. Dr. Gonzalez adjusted his dietary program to suit my needs as a myeloma patient. The diet he designed to balance my body chemistry included almost daily meat and potatoes and required that I eat a piece of cheesecake once a week! There were also many dietary supplements which had to be ordered through the doctor?s office.

MT: Were you continuing your regular follow-up with Dr. Greipp at Mayo as well?
LG: Yes. I was being monitored by Dr. Greipp, and he continued to check my IgG levels every 3 months. My first series of blood tests after I started working with Dr. Gonzales showed that my IgG level dipped a bit, so I was encouraged. Three months later, I went to Mayo for a check-up, and my IgG level had gone way up. I also had a plasmacytoma in my chest. At that point, I discontinued working with Dr. Gonzales and began conventional treatment with dexamethasone and Aredia. This was two and a half years after I was diagnosed with myeloma!

MT: Do you think that the alternative therapies had any effect on prolonging the time that your myeloma remained in abeyance?
LG: It?s hard to say. While they certainly didn?t cure the myeloma, I felt fine and did not require treatment for two and a half years. And good nutrition makes sense to me.

MT: So was that the end of the line for complementary medicine for you?
LG: No. I had heard about Dr. Nieper?s work in Germany through a myeloma patient in Florida. Dr. Nieper?s program was a combination of the juices I had been taking plus the injection of a substance that is supposed to boost the effectiveness of the thymus gland, which is part of the immune system. The medication was expensive, had to be self-injected, and had to be shipped from Germany. After a short period, I had to stop ? it was just too expensive and too difficult to import the drug. In any case, my disease continued to progress. My doctor said my disease was ?primary refractory? (non-responsive to chemo) and started me on thalidomide which helped me achieve a complete remission within months. As a result, I enjoyed a good quality of life for a period of 2 years. When I stopped responding to thalidomide and my condition worsened, I underwent a stem cell transplant. Today, once again I feel strong and vibrant and, short of monthly infusions of Zometa, do not require treatment.

MT: What would be your advice to other myeloma patients?
LG: If you have the time, the resources, and the inclination, don?t be afraid to look at alternatives as long as you are also being followed by a multiple myeloma expert. Ask to speak with other myeloma patients who have successfully used the therapy you are considering. Always run things by your doctor before doing anything, and proceed with caution.