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Karen’s CLL Journey- Wisdom, Inspiration, Resilience and Much More…

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By Karen Raman

I was diagnosed in 1991 – by accident.  My white counts were elevated when pre-op tests for elective surgery were completed.  The doctor believed there was an error and he reran the tests the same day.  The white counts were noticeably higher. I was referred to an oncologist who ran additional tests and consulted with other doctors for a month and  then decided to complete a bone marrow biopsy for a definitive diagnosis.

I was a 35 year- old woman diagnosed with CLL (Chronic Lymphocytic Leukemia), which is known as the old man’s disease. My disease was stage 0, which meant the doctors would monitor my condition through periodic blood work. After one year of monitoring, I received permission to resume infertility treatments.  In April 1993, I delivered a healthy baby girl.

In June 1998, my CLL had progressed to the point that medical intervention became necessary. Multiple rounds of chemotherapy slowed the progression of my disease. However, over time, the chemotherapy became ineffective.  In December 2002, the doctors decided to perform an autologous (my own) stem cell transplant.  I responded extremely well; but in March 2010 my CLL had advanced with a vengeance to Stage 4. When four chemotherapy combinations did not control my disease, I decided to proceed with an unrelated allogeneic (donor) stem cell transplant.  I did have minor and self-limiting Graft Versus Host Disease, (GVHD) which is an immune mediated disorder that can occur after an allogeneic stem cell transplant.

After four years, I experienced chimerism, which can occur when a person receives a stem cell transplant from another person and absorbs some of that person’s cells. It was resolved with Ibrutinib (Imbruvica), an immunotherapy drug that attacks the cancer cells only.

During my years of treatment, I frequently suffered from fatigue.  I would listen to my body and take a nap or go to bed early. In addition, I was as active as I could be.  Also, I continue to suffer from cognitive issues.  To improve my memory, I use mind-stimulating games; I write things down and place reminders on my Google calendar.   At different times, I have suffered from pain and I always report that to my doctors so they can determine if it needs to be addressed.  Radiation reduced enlarged lymph nodes in my pelvic area and I received chemotherapy injections in my spine to kill the cancer cells that had invaded my spinal fluid. Neuropathy has caused pain in my feet and I receive reflexology treatments to ease the numbness and burning.

Both 2013 and 2014 were challenging years. I developed Lymphocytosis that required a number of infusions of Lymphocytes from my original donor. I also contracted Pneumococcal Pneumonia that led to multiple organ (heart and kidney) failures from which I now have completely recovered. But my response to the donor transplant was not as expected, which led my doctors to request a fast-tracked approval for Imbruvica (Ibrutinib). During this extremely difficult time I relied heavily on my faith. I was blessed to have prayers being offered on my behalf from around the world and had loving support from my family, friends and church family.

Over the course of my treatments, I asked my doctors to provide me with reliable websites that I could explore for additional information. Whenever I did not understand an explanation, I would ask my doctors to explain it in a different way. Also, I participate in webinars, conferences, transplant reunions and any applicable classes that are offered by various organizations.  You are your own best advocate. Stay on top of the medications you take, the doses that are prescribed and what each one is for.  Most of all, think positive!  In my opinion, a positive outlook is at least fifty percent of the battle.  I read books written by individuals who have faced difficult situations and have conquered them. One of my favorite statements is from Lance Armstrong, “On the days you feel your worst, remember your chemotherapy is working it’s hardest.”  I have referred to that statement numerous times over the years.

Throughout my illness, I have been treated at West Penn Hospital.  My medical team has given me unfailing support during my journey. They are always a step ahead and closely follow all research developments. To this day, I believe that I am in good hands, and I have complete trust in my team of oncologists.

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