What a disappointment! In early January 2001, I nervously opened the envelope with my lab results and found that my six years of MGUS (or possibly smoldering Waldenstrom’s) had most likely progressed to active Waldenstrom’s (WM). During those years, I lived fully, working part-time, finishing my doctorate in health education, traveling, focusing on wellness, and appreciating the uniqueness of my two teenage/young adult children. My husband and I escaped the reality of the inevitable diagnosis and continued with our planned trip to the South Pacific. Lying on the beach in Bora Bora, I thought about the bone marrow biopsy report that awaited me when I returned and how I would face the challenges looming ahead.
In a bizarre sequence of events, my dad, age 88, was on a similar path into the strange world of WM. Dad was diagnosed six months before I progressed to WM. We were bewildered and uneasy – joining Dr. Mary McMaster’s Familial WM Study gave us the satisfaction of contributing to the understanding of WM in families.
Realizing that my disease progression was actually beyond my control, I accepted the reality and put an action plan in place. Research was at the top of the list. Knowledge is POWER, and through my efforts I learned about the characteristics of this unusual disease, treatment options, prognosis, IWMF, local IWMF Support Group, and Arnie Smokler, IWMF President and a highly recommended resource person. After an uplifting conversation with Arnie, I had direction – a choice for WM expert and treatment options. Fully empowered, I questioned my local oncologist’s recommendation to treat my WM immediately, and instead followed the advice of a WM expert for watch and wait. I felt “free as a bird.” This “quiet” period gave me time – not to sit around and worry, but to focus on healing. I quit my job and consulted regularly with a well-known integrative oncology physician in New York City for a nutritional/supplement protocol. I believed that I was strengthening my own healing power and hoped to push any need for treatment down the road as far as possible.
As hard as it was for me to accept my inability to control the progression of MGUS to WM, it remained even more difficult, despite my highly symptomatic state, to say “yes” to chemotherapy. In 2002, I agreed to a regimen of Cladribine (2-CdA) and Rituxan, but not without a satchel of chemo support supplements recommended by my integrative physician. My oncologist, who was very concerned about treatment, stated emphatically: “Do what you need to do; just get treated!”
As I entered the chemo infusion room, I felt a sense of betrayal of my health principles. I knew I had no alternative, except to give up and let the disease take control of my life. Soothing words of a guided imagery tape helped me to visualize chemo’s action against the cancer cells and muted the annoying sounds of the infusion pump.
The first round of chemo was a major disappointment, leading to only minimal recovery. My husband and I were ready to cancel our trip to France, but my oncologist encouraged us to go. Could he have been thinking that this would be our last opportunity? Despite the wonderful Paris/Provence experience and another round of chemo, remission remained elusive. My oncologist was clearly frustrated! I tried to stay positive between thoughts of impending doom.
At this point, I was ready to jump into the “Brave New World” of clinical trials. NO more standard chemo! The prophetic words of my dad: “Marcia, you are young enough to take advantage of the new treatments,” were in my thoughts as I looked for new targeted therapies.
Living in Pittsburgh, Pennsylvania, I knew that I needed to do some serious travel to be able to participate in clinical trials. I investigated a Thalidomide trial in New York City….too many side effects. My next trip was to Boston to check out possibilities at Dana-Farber. I was excited to learn that a Campath trial had just been approved, and signed the consent as the first participant with a sense of hope for remission and adventure in contributing to WM research.
My initial encouragement at seeing all lymphocytes completely eliminated in the blood with one test dose of Campath was quickly forgotten as a new concern appeared in the form of dropping platelets. After ten days in Boston, I was given the green light to continue treatment in Pittsburgh. My fears about leaving the health care professionals I knew and trusted were relieved as communication between Dr. Treon and the cancer center proved to be exceptional. However, platelets were worrisome and kept dropping with treatment to dangerous levels. And there was the visual impact of waking up with a large hematoma on my lip! At this point, I did not meet the trial guidelines and had to stop treatment – another failure and more uncertainty.
Despite cancer, life goes on. My thoughts turned to the happy occasion of my daughter’s college graduation. We made plans for a wonderful family graduation celebration in the Berkshires. I rejected the recommendation of starting an aggressive chemo protocol, insisting that I needed to enjoy my daughter’s graduation….treatment can wait.
After a memorable graduation week-end, I returned to thoughts about WM treatment. Thinking about my commitment for no more standard chemo, I searched for any possibility of a clinical trial. Hope! – a trial of Genasense at the Mayo Clinic was opening in the near future with a site in Baltimore.
Getting into the Genasense trial was a little tricky, but with the help of a WM expert who had a connection at NIH, I enrolled. Genasense required a port for continuous infusion with a small pump over ten days, and then a ten day break, repeated for about five months. At that time, flights to Baltimore during the week were extremely expensive so I opted for a unique travel experience with Angel Flight, an organization that provides travel service for medical treatment using volunteer pilots and their small planes. I loved the exhilarating feeling of small plane travel – like an escape from cancer treatment!
My husband joined me on one particular flight where we were stranded in Baltimore due to inclement weather. While having dinner at an Italian restaurant, our waitress suggested that we hire her friend, a cab driver. After agreeing on a price, we headed off for a cab ride that was like something from a James Bond movie. Forget WM – we thought we were going to die on the Pennsylvania Turnpike!
Overall, Genasense turned out to be a mild treatment that stabilized my disease and improved hemoglobin without side effects. I enjoyed several months off treatment. Feeling somewhat optimistic, my husband and I made plans to build a house in a new development within the city limits of Pittsburgh, close to all the amenities that city life has to offer.
Sadly, during the winter of 2004, my dad died from complications of WM – a cardiac event caused by increased blood viscosity, following heart valve surgery. I didn’t just lose my dad, but also a close partner on the WM journey. We shared experiences of fatigue, nosebleeds, shingles, plasmapheresis, and treatment failure. My sisters and I focused our efforts on supporting Mom and helping her to move to a retirement community.
Over the next ten years, participating in clinical trials became a way of life – trial after trial, most with moderate success.
- Velcade twice weekly
- Velcade once weekly/Rituxan
- Panobinostat (LBH 589)
- Velcade once weekly/Everolimus (RAD 001)/Rituxan
- AVL 292
Signing the informed consent for each new trial was like charting a new course in hopeful anticipation of a long remission and potential breakthrough in the treatment of WM. The end result, however, was that I settled for controlling the disease at a “simmering” level, one that was compatible with enjoyment of life.
As I reflect on my extraordinary trial experiences, some have a special place in my memory:
- Sharing thoughts about the “cancer journey” with new friends at the infusion centers
- Being warmly welcomed by the friendly and caring staff members at trial cancer centers
- LONG road trips with my husband from Pittsburgh to Baltimore for twice weekly Velcade treatments
- Enjoying great dining, shopping and cultural activities during my frequent trips to Boston
- Traveling directly to Florida for rest and recuperation after treatments in Boston
- Traveling back to “paradise” in the South Pacific while on an easy oral treatment – Enzastaurin
- Support from family, friends, IWMF and LLS Support Groups, and IWMF-TALK
- Getting approved for the AVL 292 trial after being rejected for the ibrutinib trial due to too many previous treatments
- Knowing my local oncologists were available as I traveled to various clinical trial sites
- Being given the designation of a “professional clinical trial participant” by the trial investigator as I entered my eighth clinical trial
- Feeling a sense of accomplishment in contributing to WM research
- And finally, being grateful for the dedicated researchers (Drs. Ghobrial, Treon, Frankel, Gertz, Badros and Hill) who made these cutting-edge treatments available to me as a WM patient
Despite the demands of clinical trials (travel inconvenience/cost and additional testing) and unknown risks with some scary adverse events, I feel lucky to have been able to take advantage of new treatment options, which have undoubtedly contributed to my survival and good quality of life.
WM changed my life in ways that I could not have imagined. Anger in the beginning at having my life thrown into the chaos of treatment and relapse cycles has been replaced over the years by a deep appreciation for the unforgettable experiences, many friendships, confidence in meeting challenges, and the constant reminder to enjoy life. I am currently stable on a low dose of Imbruvica.
At the risk of being labelled “the patient from hell,” I followed my instincts and took a different path, one that I believe has made a difference….the journey continues.
IWMF Support Group Coordinator