Nicolas van Dyk (Nick) is a multiple myeloma survivor and guitarist/lyricist of the progressive band Redemption. Nick is our inspirational multiple myeloma patient for this week. Nick maintains a personal blog, Nick’s Myeloma Blog, and recounts his experiences with doctors and treatments through this. He writes very detailed accounts of his appointments and believes in fighting myeloma head on.
Read Nick’s interview with CureTalk to get a load of Nick’s infectious optimism and his vast knowledge about multiple myeloma. We have split the interview into two parts. Click here for part 2.
Me: Nick, when were you diagnosed with multiple myeloma? Can you share with our readers how you accepted the diagnosis?
Nick: I was diagnosed in October 2008, really by accident. I had been on Lipitor for cholesterol for some time, and as that drug can affect the liver one needs to get blood tests every few months to make sure the liver isn’t being overly taxed. Ironically, I hate needles (boy did I ever pick the wrong disease) and so I had been putting the blood test off for a while. My doctor told me I had to get the blood test done or he wouldn’t refill my prescription, so I submitted. He called me back to run more tests a couple of days later. Then he called me back and explained I had an abnormal protein in my blood, and that it could be something called MGUS, or could be something called Myeloma. I said, “anything that ends in ‘oma’ is bad.” He, being an anti-alarmist, said it was unlikely that I had it at my age (40) and described it as a “malignancy of the blood” that was not as bad as Leukemia. He referred me to a hematologist to find out for sure, and three days later, I had my first bone marrow biopsy. Two days after that, the hematologist told me I had Myeloma and this unwanted adventure began in earnest.
The odd thing is I didn’t feel sick. I had a slight pain in my shoulder that I assumed was turning 40, but turned out to be an emerging lesion in my shoulder bone. I was a little tired, which I assumed was also turning 40, but it was the onset of anemia.
As far as accepting the diagnosis, I was horrified for about the first 24 hours – there was some weeping, wailing, and gnashing of teeth. I spent that time putting a will together, doing some quick financial planning for my family, and making a list of things that I wanted to write down for my two children who were 6 and 1 at the time. But soon thereafter I figured I had been dealt a terrible hand and I had two choices: fight, or roll over and die. It was a pretty simple decision.
I was fortunate enough that I was diagnosed the way I was, so that I had a few weeks to make a decision about how to be treated. I credit this with saving my life.
Me: Your blogs are very descriptive about treatments. Do you believe that being an informed patient has helped you in this fight against multiple myeloma?
Nick: Absolutely. The fear of the unknown is one of the biggest fears we have when it comes to medicine, particularly this kind of medicine. What is really happening to my body? What will happen if I am not treated? If I am treated, what can I expect the results to be? What will the side effects of chemotherapy and other treatments be? Is this (whether “this” is disease, treatment or death) going to hurt? These are big questions that weigh on the newly diagnosed. An informed patient is better able to face all of it. And for me, as one who is used to solving problems and having some direction over my life, I also know it would be challenging for me to turn my care over to someone who was going to poison me in order to get me better. Remember: I didn’t feel sick. It’s hard to ingest poison when you don’t feel sick. So in order for me to be prepared to turn things over like that, I needed to have confidence in my doctor and in the protocol that would be followed. I needed to ask questions and understand both the theory (the pursuit of a cure) and the biology behind the approach.
Of course, we all have different levels of tolerance for data and investigation. As it happens, I have a high tolerance, so I asked a lot of questions and developed a pretty good layman’s understanding of hematology. But I would strongly urge people to learn as much as they have an appetite for. An informed patient is an empowered one.
Me: What is your current treatment regimen?
First, I think it’s important to establish that I am three years into complete remission – that will give the reader an understanding of how aggressive the treatment regimen is. So, I am in complete remission with no trace of the disease in three years, and I remain on a weekly infusion of Velcade (1.3mg per meter squared, which is 30% higher than the “standard” dose), 15mg of Revlimid on days 1-21 of a 28 day cycle with one week off, and a relatively small amount (8mg) of dexamethasone weekly. These meds will continue a few more months, and there is some possibility I may continue on Revlimid in a reduced dose for three more years, though I hope not as I have had one pretty undesirable complication (a squamous cell carcinoma in my right index finger that required permanent nail removal) which I attribute to that medicine.
I also take 400mg of Acyclovir daily, a B complex called MetaNX to help alleviate / prevent peripheral neuropathy, and a variety of other things (Pantoprazole, magnesium supplements) prophylatically or otherwise in response to the side effects of the primary meds. Plus my trusty Lipitor. : )
I also receive Zometa monthly because we are, as part of my treatment plan, watching the formerly active Myeloma lesions refill with new bone. I had 19 active lesions at one point. They are all gone except for three former lesions in my spine, which measure 2.5cm when they were cancerous but are now only .4cm. As soon as they fill up with new bone, I believe, I will be cured. I am not mis-using that word: cured. I do not believe this is an incurable cancer, and neither (thankfully) does my doctor.
The interview with Nick continues…click here for Part 2.
- CureTalk Interview With Nicolas van Dyk, Carfilzomib, Stem Cell Transplants and Living A Normal Life with Multiple Myeloma – Part 2
- CureTalk Interview With Pat Killingsworth, Author And Multiple Myeloma Survivor
- CureTalk Interview With Linnea Duff: Healthcare Advocate and Lung Cancer Survivor
- Interesting Toronto Sun Story/Interview With Multiple Myeloma Survivor Lisa Ray
- Interview with Pat Killingsworth, Author of “Living with Multiple Myeloma”