A Profile of Hope: Marcia's Story
In Marcia's own words
In December of 2007 I asked my primary care physician about a lump in my neck, but the actual reason for my visit to the doctor was that I had a lot of wax in my ear. My primary care doctor didn't think the lump felt like anything serious but ordered a computed tomography (CT) scan for me. For a couple of years I had also been experiencing a feeling that the Eustachian tube in my right ear was being blocked. Doctors treated me for an allergy, but it was later discovered that swollen lymph nodes had been pressing on it. After my cancer treatment I never experienced that again.
My CT scan showed many "hot spots" (which indicate cancer), in my head, neck, chest, abdomen, and pelvis. I was referred to an oncology doctor, who ordered a needle biopsy and blood tests. The needle biopsy was negative and the blood test wasn't alarming.
In January 2008, I had surgery to biopsy the neck lump, a bone marrow biopsy to determine if there was bone marrow involvement and a positron emission tomography (PET) scan to confirm the CT findings in December and a gated blood pool CT scan to assess cardiac function. The lump in my neck turned out to be malignant, as was a salivary gland next to it. Both were removed, and I was diagnosed with mantle cell lymphoma (MCL). I was very upset about the diagnosis of MCL.
I remember telling my doctor when he was performing the bone marrow biopsy, "I can't die now. I have too much to do!" It turned out that there was not much cancer involvement in the bone marrow — 4 percent, as I remember. But I was even more dismayed about the cancer diagnosis, when I found out there was no cure for MCL.
Together my doctors suggested my treatment plan, which was cyclophosphamide, vincristine, and prednisone (CVP) and rituximab (Rituxan). All were administered intravenously (IV) except for the prednisone, which was a pill. They did not suggest rituximab-cyclophosphamide, hydroxydaunorubicin, vincristine, and prednisone (R-CHOP), another standard treatment; I'm not sure if that was because of my age at the time, which was 69 or that they were holding out the doxorubicin (Adriamycin) in case I might need it later.
I began chemotherapy in February of 2008, and after seven chemotherapy cycles (in June) I had another PET/CT scan to assess my progress. In July, I had an endoscopy to study my gastric fundus, where they believed my cancer began. The report was good, and they had me proceed with the surgical placement of a Hickman Catheter in my chest in preparation for a stem cell transplant.
On July 11th, I was admitted as an in-patient for a very large dose of cyclophosphamide in an effort to kill any remaining cancer cells. In preparation for the procedure, I received 10 straight days of filgrastim (Neupogen) and moxifloxacin (Avelox) shots, and then my stem cells were harvested. They were able to acquire enough in just one day. (Many patients require 2-3 days for harvesting.) There were, perhaps, 10 to 12 people in the room with me, having their stem cells harvested. Some got sick, but I did not.
I went home for about a week and then I was admitted for 4 weeks. For four days, I received a very high dose of chemotherapy. Then after two days of rest, my stem cells were returned to me on August 5th (I call this date my second birthday!). Five days later, filgrastim was resumed in the hospital until my white cells had sufficiently recovered.
While in the hospital I was in a sanitized private room, and any visitors had to wear sterilized suits, masks, shoe covers, etc. Visitors were discouraged, except for family. Being able to watch the 2008 summer Olympics and read a little got me through the weeks of boredom. On August 25th, my Hickman Catheter was removed, and I was discharged from the hospital.
When I returned home I had to be isolated in a clean room for 100 days. I had no immune system and could not socialize, for fear of catching some sickness. My husband, who was the most wonderful caregiver anyone could be, had to prepare all my meals, administer pills, clean my bathroom every day, do all the wash and shopping, etc., all while keeping my spirits up. He drove me to all my chemotherapy visits, doctor appointments, and scheduled testing. I never could have gotten through the process without his unfailing help and support. I gradually regained my strength and appetite, but it took me about three years to feel like my old self again. So far, no evidence of cancer has reappeared, and I haven't experienced any side effects, as so many others have with MCL.
What I would tell a newly diagnosed patient is to get educated and be sure your spouse, family and loved ones get educated as well. Go to appointments together (with a loved one) because you will each hear different things the doctor says. Go to the Lymphoma Research Foundation (LRF) website; go to the educational programs they offer because they are unbelievable learning events. At the Lymphoma Workshops they offer breakout sessions depending on what type of lymphoma you have. Doctors are there to tell you about the latest treatments and to answer questions. I guess the other thing, to takeaway, is that if you are able, contribute to research. It takes money to find a cure.