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My Story with Multiple Myeloma In Summary: In September 2006 I was diagnosed with Monoclonal Gammopathy of UndeterminedSignificance (MGUS) with associated neuropathy. MGUS may be a precursor to Multiple Myeloma, but does not develop into cancer in everyone who has it. The associated neuropathy was severe, debilitating sensory nerve pain throughout my body, including my lips and tongue. Due to severe pain and resulting fatigue, combined with the side effects of massive doses of brain medications prescribed to address that nerve pain and allow for day-to-day functioning, I took an early disability retirement from teaching in 2007 and my lifestyle changed radically.
While a neurologist managed the day-to-day symptoms I experienced, oncologists closely monitored the MGUS. There were no significant changes until December 2013. From that point on, the blood work results began to show movement in the “wrong” direction. In the summer of 2014, test results began to reveal more rapid changes. My oncologist said, “It is clear you will need to be treated for Multiple Myeloma at some point; it’s a matter of time before we have to ‘pull the trigger’ on this thing.”
We had already purchased our retirement home and were planning to move to Whidbey Island in Washington State in 2015. My oncologist was extremely positive about this because some of the best cancer treatment and specifically myeloma experts are in the Seattle area. He believed the disease was developing slowly enough that we would be able to wait for treatment until after our move.
However, at my regular blood work test result appointment April 10, 2015, we discovered I had developed full-blown Multiple Myeloma and treatment had to begin in California that very week. I began oral chemotherapy--Revlamid and Dexamethasone, a treatment plan expected to last six months and lead to autologous bone marrow transplant. This turn of events delayed the de-cluttering and packing of our possessions and the preparation of our townhome to sell, but many friends and family members stepped in to assist in a myriad of ways. Jerry’s retirement festivities and celebrations at Vanguard University were awesome. Our townhome sold. Farewell events were enjoyed. The moving trucks were loaded and headed for Washington.
Meanwhile, I had developed excruciating back pain, which California doctors dismissed as normal for someone who is moving. By the time I flew into Seattle on July 3rd, I was in severe pain and quite ill. Jerry arrived with our car the next night. We met our Seattle oncologist for the first time on July 6th. I was in and out of three hospitals, had multiple MRI’s and tests, and over the course of receiving the extraordinary care and extraordinary caring of the Swedish Hospital medical personnel, we discovered that I had compression fractures in my back as a result of the cancer, that the multiple myeloma was diffused throughout my bones, that the disease was much more advanced than we’d known. They began a once-a-month Zometa infusion to protect my bones.
In California, only one disease marker was being monitored; had different tests been ordered, I would most likely have been treated months or even years earlier. In many ways, we feel the move and change of doctors, the expertise and healthcare here in Washington saved or at the very least extended my life. We are very grateful.
By October 2015, after four 28-day cycles of Revlamid/Dexamethasone, tests showed the disease continuing to advance. So my case was taken to a conference of doctors who decided it would be best to change to a six-cycle chemotherapy treatment of once-a-week shots of Valcade. After five cycles, tests indicated the disease was advancing with even greater speed, that my response to Velcade was nil. None of the treatments I’d had were moving me toward remission, slowing the disease, managing it, or in any way benefitting me.
In November 2015, in consultation with a “Multiple Myeloma doctors’ guru,” and a conference of doctors, the decision was made to discontinue Valcade and begin a 4-month treatment of Carfilzomib infusions twice weekly, Pomalidomide pills 21 days out of each 28 days, and Dexamethasone once a week. There were some delays as insurance denials had to be appealed, etc., but this protocol is now in place. I have had six infusions and am beginning a two-week break from Carfilzomib, while starting the Pom/Dex last week and moving forward.
At the same time, we learned that bone marrow transplant is not a treatment for Multiple Myeloma in and of itself. However, there are very aggressive chemotherapies for Multiple Myeloma that completely kill the MM cells, while at the same time rendering the bone marrow dysfunctional; so getting to a point where the blood is healthy enough for an autologous stem cell collection allows the patient to have these more aggressive therapies. The transplant is given with the chemotherapy and in that way replaces the healthy cells the bone marrow no longer produces. The goal, then, is to stop the advancement of the disease, move as close to remission as possible, manage the disease long enough for a stem cell collection, and in this way open the possibility of more effective treatments with transplant accompanying them.
On December 24, 2015, I had a port surgically implanted as my veins were no longer cooperative for blood draws or IV infusions. Merry Christmas to me! :)