My Disease is Called Waldenstrom Macroglobulinemia

I Was Told the Bad News: You Have Non-Hodgkin Lymphoma

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I have Waldenström’s Macroglobulinemia, a type of non-Hodgkin’s lymphoma (NHL). It is a rare, slow-growing B-cell lymphoma that occurs in less than 2 percent of patients with NHL.

It Started with a Strange Sensation

In May of 2013, I was giving a speech at my oldest sister’s retirement ceremony when I found a strange sensation in my mouth. My tongue began to hurt and I found that I could hardly speak or eat.

After returning home, I visited three doctors – my primary care physician, an ENT specialist and my dentist. I was told that it was “shingles,” “thrush,” and even “burning tongue” syndrome. Nothing worked, but the medicine for thrush did help, a little. Also, my left hand started to hurt as well. I was told by most of the doctors that it was arthritis. Then my left foot showed symptoms of plantar fasciitis. 

After many tests and visits with the hematologist, rheumatologist, and an oncologist, I discovered that I had a very high sed rate (ESR, or erythrocyte sedimentation rate), which indicated inflammation. I was told I probably had rheumatoid arthritis, or perhaps melanoma. I then saw the oncologist who gave me a bone marrow biopsy.

You Have non-Hodgkin’s Lymphoma

I was told the bad news, “You have non-Hodgkin’s lymphoma. And you have Waldenström’s.” My husband and I just stared at the doctor and each other.

We were completely shocked. What was Waldenström’s? I would find out!

Over the next seven months I saw many doctors, and I got a second opinion at City of Hope, an NCI-designated cancer center. I took Rituxan (rituximab)--an antibody that targets the lymphoma cells—and I received four IV infusions over several weeks.

Though I had no side effects at that time, it soon became clear that the numbers were still too high. And, with rituximab, a potential side effect in Waldenström's is that you get a spike in the immunoglobulin M (IgM) antibody levels weeks or even months into treatment.

When IgM levels get too high, this is associated with the blood becoming too viscous, potentially causing certain symptoms. One of the symptoms is abnormal bleeding, and I experienced this as hemorrhaging behind the retina of the eye.

I also had increasing pain in the left hand and recurring pain in my mouth. My IgM numbers did not go down enough for my doctor and I also had anemia, one of the symptoms of Waldenström’s. I was tired all the time.

They feared the inflammation was coming from my hand, so I had an MRI and several other blood tests. It looked like the hand had an infection, inflammation, or worse--another kind of cancer! I had a hand biopsy, a surgery that took a little sample of bone out of the hand, which was then tested for all the potential problems.

Nothing showed up. Although the hand still hurt, I had to continue some kind of treatment.

Because I still had problems with the IgM-producing cancer cells, they gave me Imbruvica (ibrutinib). This is in pill form, and I take three pills a day. It’s going on two months, and I can say sometimes I feel better, and then sometimes I am still very tired.

Instead of “Why Me?” I Started Saying “Why Not Me?” 

I should mention I played 30 years of competitive tennis, was in the Air Force for 20 years, loved to exercise, do not drink, smoke and most of the time I eat very little meat. So, when people say, “Oh, did you eat right?” “Maybe you should have exercised more? How did you ever get this?” I smile and try not to strangle them. 

I also should have mentioned this is a very rare disease, affecting about six in a million people. Only about 1,500 get diagnosed each year in the entire United States. So, when I found out about this disease, I was shocked for many reasons. However, I discovered it didn’t matter how I got this disease, I had it. Instead of “why me?” I started saying “why not me?” 

Getting Back to My Life

I feel like I am starting to go back to my life before this interruption. I have two children in college and I want to visit them. I also have a lot more on my plate that I want to accomplish. However, first and foremost, I want to feel good. That is what I am really looking forward to now.

Without the help of my friends, family and most importantly, my advocate husband, I could have never gotten this far. I am grateful to all the doctors who support cancer patients, who are kind without patronizing, and just sometimes like to listen to the patient’s venting. I also thank the doctors at City of Hope Hospital, specifically Dr. Michael Rosenzweig, a hematologist who always had time for all my questions and even laughed at my jokes.

I also thank Dr. Steven Treon from the Dana Farber Cancer Institute in Boston, Mass., whose work in Waldenström’s has literally saved hundreds of lives, and even had time to listen to my questions after an important talk he gave at a recent International Waldenstrom’s Macroglobulinemia Foundation (IWMF) conference.

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