Shaleen Camery-Hoggatt

First post: Jan 6, 2016 Latest post: Feb 23, 2024
Welcome to our CaringBridge site. We've created it to keep friends and family updated.  Your prayers, support and words of hope and encouragement are greatly appreciated.

My Story with Multiple Myeloma In Summary:
If you go to the first post of this site journal, you will be able to read a more detailed history of my journey.   My battle with active, full-blown Multiple Myeloma and treatment began in California on April 10, 2015.  As previously planned, we moved to Whidbey Island in the Puget Sound, Washington State less than three months later, meeting my new Seattle oncologist for the first time on July 6, 2015, learning there that the multiple myeloma was diffused throughout my bones and the disease was much more advanced than we’d known.   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 available in Seattle, Washington both saved and extended my life.  We are very grateful.

By November 2015, after multiple forms of treatment had been tried, tests indicated the disease was advancing with even greater speed.   None of the treatments I’d had were moving me toward remission, slowing the disease, managing it, or in any way benefitting me.  The goal with all these treatments was to stop the advancement of the disease, move as close to remission as possible, manage the disease long enough for my "last best hope"--an autologous stem cell (bone marrow) transplant.  We were told this option was becoming less and less likely for me, and it was time for me to begin creating and fulfilling an 18-month bucket list.  

Further treatments were tried, a hoped-for May 2016 transplant was cancelled, a cessation of cancer treatment was required as a chemical pneumonia was treated for months, and then things inexplicably turned around, opening a window for transplant in August 2016.  My oncologist wondered aloud, "I don't know what happened.  This is totally unexpected."  We shared that many were praying for me, to which he responded, "Tell them to keep praying."  August 2016 I had that transplant, resulting in a successful remission that lasted over four years.  

In August 2020, ever-so-slight evidence of disease began to reappear.  Over the next six months we saw a small, slow trajectory of movement out of remission into relapse.  Barring a supernatural miracle, relapse was to be expected.  Stem cell transplants usually yield 2-4 years of remission before relapse.  Initially, the resurgence of disease was very slow.  In January 2021 my oncologist described it with the metaphor of what happens after a war ends.  There are some fighters who don’t get the message that the war is over, hiding out in caves, forests, and basements.  The military and law enforcement are expected to round them up, deal with them in minor skirmishes, take care of the remaining enemy.  He likened my treatment and especially the stem cell transplant to the war, adding that remission is akin to the new peace following a war.  There are usually some undetectable cancer cells still hiding out and we depend on the body with its engrafted stem cells to deal with them.  That was the case for 4+ years, for which we are so very grateful, but then came evidence that my body either hadn’t taken care of the outliers completely, or was beginning to have difficulty keeping them under control.  With the trajectory clear, but the timing and type of treatment less so, I told Jerry I was grateful to learn we didn't have to board the “cancer coaster” in January 2021, but felt like I was given my boarding ticket and told to line up in the queue.  

During 2021, we attempted treatment three times--two chemotherapy regimens and one immunotherapy.  My body could not tolerate any of them, including severe allergic anaphylactic responses to infusions.  So we entered a "watchful waiting" period of monitoring the disease progression and treating symptoms.

In 2022, the slow-growth phase ended and we reached the place where the threat from the disease was greater than the risks of treatments.  Every set of labs showed more cancer and an accelerated pace of growth.  Generally, treatment options are far less effective in relapse and if they are effective, it is for a much shorter duration.  In addition, the body is less able to tolerate treatment.    Choosing treatments also requires balancing the questions of reward and risk.  What are the potential benefits and what are the potential side effects or negative impacts on quality of life?  While statistics can help answer these questions, we don't know for sure about the effectiveness of a treatment for me until we try it  and discover how my body responds.  

In May I was referred by my primary oncologist to meet with a Myeloma specialist at Fred Hutch Cancer Center (a partnership between the University of Washington, the Seattle Cancer Care Alliance, and Fred Hutchinson Cancer Research) for a second opinion consultation.  Basically, we were asking for her recommendations and an awesome door opened for me.  Earlier in 2022, a new treatment was approved by the FDA to treat myeloma that appears to be a game-changer.  She thought I was a great candidate for it and suggested we "get in the queue" because there is usually a months-long waiting period.  

Long story short, I was approved for the treatment and went to Seattle for the summer & fall of 2022 to have this high-risk, potentially high-reward treatment--CAR T-cell Therapy with Carvycti.  It was grueling and intense and it worked!  I had a positive response and as of November 25, 2022--the 100th day post treatment--I moved into remission.  What a marvelous outcome as we gratefully receive the gifts of a return of quality of life and extended life!    

There is still some disease detected in my body, so we do not take this reprieve for granted.  Living with an incurable disease is a sort of perpetual "limbo" with regular tests and scans to monitor for relapse.  We live with hope, trusting God's loving care, and  focusing on living each day fully and gratefully to the best of our ability.  Your prayers are greatly appreciated.   







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