Chemotherapy Cycle #2 Begins

On Wednesday, November 14th, I began my second cycle of chemotherapy. There's been a slight change to my "chemo cocktail." One of the meds, known as Cytoxan, has been swapped out for Revlimid, the one that the doctors wanted to start me with in the first place. unfortunately, Revlimid takes a while to order in, and isn't a med that even hospital pharmacies have handy, as it's a highly controlled chemo med that the company that makes it makes people jump through a bunch of hoops to get. Supposedly, it'll be worth it, though. Revlimid, Velcade and Dexamethazone together make up the most commonly-used "chemo cocktail" for all forms of Multiple Myeloma (MM), including Primary Plasma Cell Leukemia (pPCL). But now that the cocktail has changed, so may my side effects. Hair loss is a potential side effect that went away with the Cytoxan, so it looks like I'll be keeping my hair. =0) Other side effects I'll be watching for with my medical team at the LDS Hospital Blood and Marrow Transplant and Acute Leukemia program are peripheral neuropathy (loss of sense of touch coupled with chronic pins-and-needles and/or burning sensations) in the hands and feet, and gastrointestinal issues. There are other side effects that may come, but most are pretty manageable...with other meds. It's kinda funny. I have a plastic container about the size of a shoe box on my bedside table shelf that's about 3/4 full with my regular daily meds and my "what-if" meds. What if I can't sleep? I've got Ambien. What if I have pain (and don't need to work or drive)? I've got Oxycodone. What if I get hiccups from my steroids (Dexamethazone)? I've got Baclofen. What if I'm nauseous? Yeah...I've got 3 different pills for that, too. What if...what if...what if...? Pills...pills...pills.

On Wednesday, I ended up spending about 3 hours at the clinic for blood work, Zometa (a monthly bone-strengthening infusion to help with the bone brittleness caused by MM), Velcade, and an hour-long personal consultation with Dr. Finn Petersen, the director of the BMT program at LDSH. Awesome. I couldn't believe he took all that time just with me. He discussed my new cocktail and it's cycle (21 days in stead of 28 days), side effects, and my projected plan for bone marrow stem cell transplants. He brought in a couple articles from different Oncology journals and discussed everything from mortality and morbidity rates with the two different kinds of transplants to different time-tables between transplants, from a couple months to a few years. He shared the results of research that has been done specifically regarding pPCL. He shared a very recent (Sept 20, 2012) article with me called "How I treat plasma cell leukemia," written by four of the world's foremost experts on the disease. All very informative. Now, Noelle and I have to come up with a plan. We're 99% sure we'll go with an autologous, or "auto" marrow transplant (using my own stem cells) first. Then would come the allogeneic, or "allo" (donor stem cell) transplant a number of months to a number of years later. We have to decide which option is the best for us. One of the benefits to waiting a longer time between transplants that was highlighted in the "How I treat plasma cell leukemia" article is that the patient is allowed a longer remission (in most cases) between transplants with a pretty high quality of life. Also, waiting allows for further research and the development of newer, more advanced treatments and post allogeneic-transplant care. With an allo transplant, there are a lot of risks involved, up to and including relatively high morbidity (illness) and mortality (death) rates. It can be difficult to discuss these things, but it's important to know and understand what's involved. The truth of the matter is that the only real option if we want a long-term (potentially decades-long) cure is to go with an allo transplant. With an auto transplant, there's typically a state of remission following the transplant, but the cancer will ultimately come back, as my stem cells will begin to produce the cancerous plasma cells sooner or later. Some pPCL patients (typically the older ones) simply opt to do two or three auto transplants until their bodies begin to reject all chemo meds they're given, at which point they just pack it in. With the relative age of me and my family and the things we still want and need to accomplish before I leave this earth, that's not the route we want to take. So, we have some decisions to make regarding the timing of the allo transplant, as there are some suggested benefits elsewhere to doing the allo transplant very closely following the auto one. Lots of prayer and fasting will go into these decisions, as you might imagine. I was SO INCREDIBLY GRATEFUL that Dr. Petersen took so much time out of his day to spend directly with me. He had even made a personal phone call to the primary expert among the authors of the "How I treat plasma cell leukemia" article, and they discussed MY specific case "for quite a while." Amazing.

I feel so blessed to be the unique patient being treated by the folks in the BMT program right now. pPCL is such a rare form of MM that in all their years treating MM, they've never had a patient with pPCL. They're doing so much to both learn for themselves and instruct me on their findings. I feel like every doctor, physician's assistant, nurse practitioner, nurse, nurse's aide and receptionist knows me personally. It's kinda fun to feel so "special," though I must admit I wish it were for different reasons. =0)

Right now, based off of how well my cell counts have been responding thus far, Dr. Petersen is anticipating that we'll be ready for my auto transplant in mid- to late-January, after my third Revlimid cycle (and 4th chemo cycle overall). That seems so soon - just two months away. Wow. It's amazing how quickly life changes. In my first 40 years of life, I've had no major surgeries (only had a couple moles removed as a precautionary measure), and been medicated only for flu, bronchitis and pleurisy. In the last five weeks, I've consumed more medications than in my entire life leading up to that point. Life is different, but I'm so glad I was born when I was, to be able to benefit from modern medicine and techniques to combat my cancer. 

Overall, it's been a good week. I have been able to work every day and get some things done there. Some accounts I've been working on for several months are finally going to pan out with some nice sales. Here's hoping, as I'll be needing those commissions to help us through financially when I'm recovering from my auto transplant in a couple months. My recovery time should be from 4 to 6 weeks long, between time in the hospital and time convalescing at home.

A HUGE blessing that I recognized yesterday is that my diagnosis came this year, rather than last. Last year, I was self-employed and WAY under-insured for something like this. We're talking about tens of thousands of dollars difference in medical costs. Like I said, it's a HUGE blessing that I'm working where I am with the insurance I have.

Earlier this week, I received a large padded envelope from my old high school friend, John Lang, and his wife Kathy. They have San Francisco Giants season tickets, and attended the first World Series game this year. That night was Stand Up To Cancer night. John and Kathy sent me the World Series official program (about the size of something like Cosmopolitan Magazine), two StandUpToCancer.org rubber bracelets (which Noelle and I put on immediately), and two pins commemorating the Giants' postseason run. What a great, thoughtful gift. The photo below is from the World Series game they attended. Thanks, John and Kathy!