This all started four years ago when I began a frustrating quest to figure out the cause of my chronic shortness of breath. In early 2016, anemia was added to the list of possible causes. My primary care doctor eventually referred me to a hematologist, but I was set on following through with surgery for GERD, convinced it was the problem. After 3 laparoscopic Nissen fundoplication surgeries, I was GERD free, but still short of breath, so I sought out a hematologist earlier this year and was diagnosed in July after a skeletal survey showed several small bone lesions and a bone marrow biopsy showed a high plasma cell percentage. I had mild throbbing bone pain occasionally, was moderately anemic, fatigued, and experiencing neuropathy in the big toe of my right foot, but all together pretty healthy. I'm at an intermediate risk with t(4;14) and have been told I have aggressive disease.
I was beside myself, but none of this was a complete shock. As every common reason to explain my anemia was found to be negative, serious blood diseases were the only thing left to explore. My obsessive googling had led me to dark places. Those first several weeks were rough, full of anxiety, hopelessness, depression, crying. I devoured every bit of information I could, including outdated prognosis data that led me to believe I would die in 3 years. It took me forever to say the words I have cancer to anyone except my boyfriend, and the pity and lack of understanding about exactly what's happening to me has become a little annoying. I understand people are just trying their best to be supportive, but I cringe every time someone looks at me with that sad face look and asks "how are you doing?".
After being referred to another oncologist, I later discovered a Darzalex-Revlimid-Velcade-dexamethase (D-RVd) clinical trial that would be opening in a few days for newly diagnosed patients at another cancer center that I ended up joining. I was randomized into the Darzalex arm and am currently in the 3rd of 4, 21-day cycles. Darzalex once a week, Velcade and dexamethasone twice weekly, and Revlimid daily for 14 days, then one week off in which I only get the Darzalex infusion and dexamethasone. After that, I would be getting an autologous stem cell transplant, 2 more D-RVd cycles, then low dose maintenance Revlimid and Darzalex every 2 months.
Treatment symptoms have included fatigue, dizziness and brain fog, feelings of a cold, back and muscle aches and pain, constipation, mild to moderate neuropathy that has mostly gone away after a Velcade dose reduction, but most annoyingly neuropathy in my tongue of all places that lingers even in my off week. I'm tolerating these medications a little better now. The first week of treatment I experienced what might have been a 24-hour bug. My temperature spiked to 103 F (39.4 C) and it freaked me out quite a bit. I am a chronic worrier!
Numbers before treatment:
Kappa free light chain, serum - 31562 mg/L
Kappa-lambda free light chain ratio, serum - 4900.93
Beta-2 microglobulin - 3.56 mcg/ml
Numbers now:
Kappa free light chain, serum - 15.30 mg/L
My light chains are in the normal range
So that's my story so far. I'm trying to practice this elusive thing that has evaded me my whole life, and that's positive thinking. I'm trying not to see this as some foreign enemy that has invaded my body in an attempt to destroy me, but a natural part of my body that has simply failed to be recognized by my immune system due to a decade of poor lifestyle choices. It's a loud wake up call, maybe even a blessing in disguise. It's already brought me a little closer to family members I don't speak to and have lifelong resentment towards but will now need. Needing people and asking for help is difficult for me, but I have to be vocal and vulnerable now. I try to think positively, but at the end of the day I am a hall of fame pessimist and full of anxiety, so it's a struggle everyday.
This is an awesome source for myeloma patients, thanks for listening!
