A Setback with a Positive Spin

Email I sent at 16:24 today to the Transplant Coordinator at OU Health:

Good afternoon,

I just received a phone call from Dr. Joudeh, my oncologist here in Florida, regarding the results of my bone marrow biopsy from the 25th. I would like to be able to explain to my family members and friends exactly what the “10%” figure he gave me represents. Is it the problem IgA quantitative serum level that is at 10% and needs to be closer to 5%? He explained that Dr. Selby wants to add an infusion of Daratumumab as soon as we can get authorization from the insurance gods to begin it, and I will start at one infusion per week for a few weeks and then taper it off according to test results between now and the transplant in May. He said each infusion takes “several hours.” I’ve been in a bit of a fog today and didn’t ask, so if you can tell me what to expect as far as time spent in the infusion suite, I appreciate that very much as well.

Will I likely need another bone marrow biopsy closer to transplant time in May?

If answers are best served with a phone call, please call as soon as possible.

Many thanks,

Kelly Diaz

---

Hopefully I will have some answers soon, but it is always disconcerting to get a phone call from your doctor. That last time that happened was in 2012, I think, when I was having severe pain from a combination of back issues, including sciatica. The pain became so bad that it was difficult to walk, and I had to lean on stack bases in the middle of the Action Alleys at the store to get from the back of the store to the front. I thought I had injured myself at work, so I went to the worker’s comp doctor at West Florida Hospital. He examined me and took x-rays, then diagnosed me with a groin strain and sent me back to work. No sooner had I arrived in the parking lot of the store when I got a phone call from the doctor himself asking if I could return to the hospital.

“I found something,” he said, and proceeded to tell me I had a broken bone in my pelvis that he had not immediately seen in the x-ray.

Of course, the doctor asked me all kinds of questions about how I might have broken that particular bone. “Have you fallen recently? Has something hit you at work? Something heavy?”

I answered no to each question. He seemed incredulous that I would have such a fracture and not know how it happened. That made two of us.

Now, some nine years later, I suspect it may have been the first indication of the problem I am dealing with now.

As on that occasion, when I answered my phone this afternoon and heard Dr. Joudeh’s voice on the other end, I felt an immediate sense of alarm. He told me he had received a call from Dr. Selby, my oncologist at the Cancer Center in Oklahoma City, regarding the bone marrow biopsy. The results were not quite what we hoped, and Dr. Selby wanted to start me on a new infusion called Daratumumab (brand name Darzalex). As you saw from my email to the Transplant Coordinator, I am not certain what the “10%” figure represents, and as soon as I have clarification, I will update everyone. I suspect it is the monoclonal protein IgA quantitative serum level that caused the multiple myeloma in the first place. It is responsible for the lesions on my skull, spine, and femur; and likely the compression fractures in my spine and the healing broken ribs as well. I do know that if we had been planning to do the transplant at the end of this month, we would not be able to do it because that number needs to be around 5%. In that regard, it would definitely be a setback. But the “positive spin” I can put on it is that I had requested a delay in the transplant so that I could see my son after nine long months on deployment with the Army, so in a way, it is not a setback after all. It’s more of a course change.

Dr. Joudeh told me he was putting the order in today for the Daratumumab, and as soon as they get the okay from my insurance, I will be scheduled for the first hours-long transfusion, which will be done intravenously. I asked him if I would also need to restart the Revlimid, and he said no, the Daratumumab is essentially replacing it because Dr. Selby feels it will get my numbers where they need to be. I will continue the Velcade injections and dexamethasone along with the Daratumumab.

So, I feel like I’ve experienced my first true setback…but then…not really. What a ride this has been! I’m so glad to have all of you along with me. It makes it bearable.