When I was first diagnosed with multiple myeloma, I couldn’t bear to go online and look up information about the disease. I guess I was just too afraid of what I would see. Because I had access to world class treatment at the Seattle Cancer Care Alliance (Fred Hutchinson Cancer Research Center) and at nearby Providence Regional Cancer Partnership and I had complete confidence in my doctors, I made a conscious decision not to go online and research multiple myeloma. I felt I could rely on their expertise until I was brave enough to do my own research. After radiation, chemo and a stem cell transplant, I had learned so much that I was no longer afraid of what I might find online. I don’t always like what I find, but I do have the strength to cope with it. Now, I am able to read about multiple myeloma and the blogs of multiple myeloma patients. Clearly, I could never have imagined that I would be writing a blog myself one day.
One thing I discovered online is that before I was diagnosed, I didn’t have one symptom of multiple myeloma. I have read over the symptoms of the disease many times on various sites and the only symptom I could relate to was shortness of breath. I have talked to my oncologist about it because it has been very puzzling to me. He told me that shortness of breath in MM patients is due to anemia. My shortness of breath was caused by a large plasmacytoma that was growing in the pleura around my lungs and the pleural effusion that it caused. Thank God for the plasmacytoma because the plasma cells in my bone marrow were just getting started. I had no bone damage or kidney dysfunction or any other symptoms of MM. My first bone marrow biopsy showed only 10% plasma cells. My doctor told me yesterday that I am a very unusual case in the way the disease presented itself. I see the plasmacytoma as a blessing because the disease had not become rampant in my body. It was just beginning. That was the good news. The not so good news, that I have mentioned before, is the pathology from the first biopsy showed that I have high risk myeloma. Without the plasmacytoma , who knows how far the disease would have progressed.
QUESTION: Is there anyone else who was diagnosed without any of the symptoms of multiple myeloma?
Yesterday, I had my monthly appointment with my oncologist. As usual, I was apprehensive about what the blood work would show. Overall, my appointment went well and my doctor said I was doing fine. My counts had gone down and that is always such a disappointment to me. I expect them to go up every month and instead they go up and down like a Duncan yo-yo!
WBC 3.6 (L) 4.5
RBC 3.31 (L) 3.37 (L)
Hgb 11.6 (L) 12.2
Hct 33.9 (L) 34.7 (L)
Platelets 181 196
Absolute Neutrophils 2.3 3.0
The light chain numbers had not been posted, yet, and I pray that they continue to “behave themselves” as my doctor likes to say.