Today, July 13, marks the 4th anniversary of my diagnosis with Multiple Myeloma. It has been an eventful journey since then. I'm still amazed that it was my initials, W.O., that allowed me to enlist in the Phase I clinical trial for MLN9708. If you are new to this blog, I'll repeat the story. the Farber had just filled its allotted slot in this clinical trial, and the next patient was to be selected from another participating cancer center. However, the day before my appointment, the patient from the Farber backed out. Normally, they wouldn't be able to nominate another candidate, but the only information they had provided about that patient were his initials: W.O. Since I have the same initials, they were able to substitute me into his slot. How do you figure that? Hello?
That turned out to be a serendipitous coincidence. At that time, the oral proteasome inhibitor, MLN9708, was in early stage Phase 1 clinical trials as a possible oral substitute for the infused proteasome inhibitor, Velcade, which has become part of the accepted standard of care for MM. I responded remarkable well to the MLN9708, achieving a stringent Complete Response after 7 cycles. It worked amazingly well for me! Since then, MLN9708 has fared very well in subsequent trials and may receive FDA approval as an alternative for Velcade in the next few months.
Next, I became eligible to enroll in a transplant clinical trial which had three arms, each including one or two autologous stem cell transplants (ASCT). I was fortunate enough to get selected for the arm that Dr. Richardson felt was the best of the 3: a single ASCT, followed by 3 consolidation cycles with Velcade/Revlimid/dexamethasone, and then followed up by 3 years of Revlimid maintenance. He felt that this was the best way to hit MM the hardest and knock it down for the longest time.
Here I am at the end of the three years. I'm thrilled to say that I am still doing great! Originally, this trial was supposed to end after 36 months, in which case, the plan was that I would go off the maintenance therapy this month. However, this trial has just been extended for another 3 years, so I should continue to get Revlimid maintenance (free of charge!) as long as I stay in remission. Awesome! ( I don't even want to think about how much it would cost if I had to pay for it!)
I can't tell you how lucky I feel to be in this situation. The combination of being at one of the world's premier cancer centers at the Farber, finding the incomparable Dr. Richardson as my oncologist, getting the benefit of new world-class anti-MM drug treatments, and just being in the right place at the right time is overwhelming for me. I am so grateful for all of it.
On Tuesday, July 21, we head off to Peru for two weeks to visit our daughter, Holly, and her fiance, Ryan. We are very excited about this trip! We haven't seen Holly since she went down there in February to teach at a Montessori pre-school. This should be so awesome! We plan to visit Cusco and Machu Picchu, as well as Puerto Maldonado in the rain forest. We will also spend a few days at their apartment in Huanchaco (near Trujillo) on the Pacific ocean.
We both have gotten all our shots--except one. I haven't gotten the yellow fever shot (not required for Peru), and I am now thinking to forgo that, based on my research on how few unvaccinated tourists have gotten the disease in South America. Not to mention that when I went to the clinic the last time, the NP thought the yellow fever shot was contraindicated for me because of my age and compromised immune system. Also, we aren't actually staying in the rain forest, but in the town of Puerto Maldonado. We're taking plenty of Deet bug spray for ourselves and our clothes. I don't think I want to take the chance of having a bad reaction to the shot, so I might cancel my appointment on Friday. Any thoughts about this?
Before we leave, I am scheduled to see Paul Richardson next Monday. I'm really looking forward to seeing him, since it has been a long time since my last appointment. That's actually a good thing, since I have been doing so well for so long. I do have a few questions for him. If I have a chance, I'll update my blog before we leave for Peru. If not, adios amigos.