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Gino was diagnosed with Stage 2 Multiple Myeloma back in October. It came as a complete shock because he wasn’t exhibiting any symptoms of disease when it was found. One thing he feels very strongly about is that everyone should keep up with their yearly physicals because this is how they caught it. He was excited about his yearly physical this time because he had reached his goal weight and lost over 60 pounds using the Optivia program that he found from a friend at work. He felt better than he had in a long time and was running again and feeling great. He was more nutritionally informed and making good lifestyle choices for his health so he wanted that pat-on-the-back from his doctor. So, we were surprised when she phoned us up and said that his white blood cell (WBC) count was critically low - 1.8 - and they needed to repeat the bloodwork. He went in the very next day to do a second blood draw and the counts were still low. From this point, we had no idea why, but his doctor referred him to a hematologist who suspected some form of leukemia or another fairly benign blood disorder.
The only definitive way of diagnosing blood disease is to do a bone marrow biopsy, so Gino went in and had one done in November. We were in a state of suspended shock, hoping that everything was going to come back normal after all. We went in to the follow up appointment together and were really taken aback when the hematologist said Multiple Myeloma. It doesn’t usually present this way and is usually found much later in the disease process. So all of the googling and reading about leukemia and other diseases meant nothing. We knew nothing about MM.
From that point, they wanted more blood work and tests and we wanted to be worked in to see someone at Winship at Emory, the cancer specialists that we are so blessed to live so close to. After 2-3 days we got a phone call from Dr Ajay Nooka’s office in the hematology department at Winship and a few days later we were there meeting with him. I don’t want anyone to take this the wrong way but it takes a lot for a doctor to impress me. I’m not easily dazzled by them and a good bedside manner goes a long way in my book. He started to explain this disease to us and he absolutely blew me away. At one point he started drawing on the paper on the exam chair with a sharpie. It was like a mini-lecture in Multiple Myeloma and current treatment strategies. It was amazing. Although I had done some reading, I knew some of what was on the internet would be outdated or inaccurate or not applicable to his diagnosis. He took us through all of it in a way that made me feel confident that we understood exactly what was happening. He presented to us a clinical trial as an option, along with standard treatment, and then we were given some time to think about it. Along with this new knowledge, they needed to schedule a second bone marrow biopsy to confirm some things - and to decide where he fell on the risk assessment. Somewhere around the time of that biopsy, Gino decided to go ahead with the clinical trial.
While all of this was weighing heavy on our minds, we had the holidays fast approaching. We had to get the consent forms signed and tests done and results completed within a certain timeframe of starting round one of treatment. All of this was happening around just before and after Thanksgiving. It all worked out and the last of his tests came back the week after Thanksgiving and he started treatment right away. On day one of treatment, we met with Dr. Nooka a third time and he went over the findings from the final tests that came in. Gino has an unusual genetic disease profile. His myeloma cells have three markers, one is the common mutation that all plasma cells have that make them cancerous myeloma cells (so all myeloma patients have this marker), the second marker is a deletion of one arm of chromosome 17 within the myeloma cells. This is an aggressive genetic mutation because that arm acts as a tumor suppressor, so that in itself is bad. However, he had one additional mutation that the doctor hadn’t seen before - his myeloma cells contain an extra chromosome 17. What this means to how his cancer is behaving and will behave in the future, we don’t know. The doctor suspects that it (may) act as a protective factor in the disease process. That extra 17 chromosome may be attempting to do the job of the broken original. Because of this, he recommended staying on course with the clinical trial and monitoring numbers very closely. So far that has worked quite well.
You can read more in the treatment description. Please let me know through comments if you have any questions. We will post short updates as things move along. We appreciate the support and encouragement from our friends and family. I know how important Gino is to all of you and he feels it too! Keep us in your prayers and thank God for the miracles of modern medicine and the wonderful doctors and staff at Emory University!
