It's no secret that I'm a Minnesota Vikings fan. It's also no secret that my Vikings love became a love of all things Minnesota. It's a love that has stayed true for decades now. I'm formulating an idea in my head where in October, I take a multi day bike trip along the Mississippi River Trail, from the northern most part of the river in upstate Minnesota to Minneapolis. And I'd like to time this so I arrive in Minneapolis in time for the groundbreaking of their new stadium. I'm thinking this would send a message to myeloma that I'm strong and would represent a personal, emotional achievement. It's an infant idea that still needs to be grow.
When I was young I read a book about Jerry Kramer. He was an all pro guard for the Green Bay Packers. The enemy of the Vikings. He played on the great Packer teams of the 60s and was all pro many years. For some hard to explain reason he's not in the Hall of Fame. When Jerry Kramer was a kid, he had a wood chopping accident that sent a massive splinter into his leg which had to be surgically removed. Some 20 years later, while a member of the Packers, a near fatal infection in his abdomen sidelined him for a year. Surgery to clean up the infection revealed a fairly large splinter of wood in his stomach. A remnant of his childhood injury and something he had no idea was even there.
With that, I think it's time for me to give a summary of my myeloma, my treatment and where I am at today.
Let's start with the diagnosis. This came on May 2, 2011. I hadn't been feeling well for a couple of months. Chemo started on May 3. Whirlwind, to say the least. We tried 3 different regimens of chemo drugs and nothing worked. My myeloma has impacted my kidneys. To date my bones are good. Because the myeloma was worsening, the resulting bad protein was beating up my kidneys. At one point my creatinin, a kidney measure, was over 8. That's in the failure category. My kidney doctor at the time wanted me to start dialysis. I opted not to. To me it seemed like the kidneys were still working. 22 months later, my creatinin is in the low 4s and high 3s. Not great, but out of failure range.
Early on in the process, I went to the City of Hope with the idea in mind that I'd do a stem cell transplant. But the City of Hope wouldn't touch me because of the kidneys. The giant, overwhelming dose of chemo drugs that come with the transplant would have been the last straw for the kidneys. It kind of made doing a transplant a risk. Around the same time, I began seeing a myeloma specialist, Dr Berenson, who was recommended by my primary oncologist, Dr Phan. Dr Phan, I have to say, is amazing. doctor and I'm so lucky to have him as my primary oncologist. Dr Berenson is fairly well known in the myeloma circles. He is adamantly against stem cell transplants and in my case was doubly adamant that a transplant was a bad idea. He saw the risks as not worth it. He views aren't universal and I've actually heard other patients with other doctors refer to him as a quack. He, however, believes that with chemo and maintenance, myeloma can be kept at bay and a person can live almost a normal quality of life. He has a picture of one of his patients on top of Mt Kilimanjaro.
After 3 unsuccessful drug attempts, Dr B came upon a protocol that worked. The key drug was something called treanda. It's used more for leukemia and was starting to be used in Europe for myeloma. Not a common myeloma drug here in the U.S. But we gained traction with it. 9 cycles later I had partial remission and we had the myeloma under control. I'm now 8 months into maintenance. Maintenance being infusion of velcade, a chemo drug, and dexamethasone, a steroid, once every two weeks, along with revlimid, an oral drug that I take at home. Two weeks on revlimid, two weeks off revlimid. I also take another steroid at home called medrol.
I feel pretty darn good. I recently rode my bike to work for the first time since my diagnosis and which had been the original clue that my health was off. It's a major step toward normalcy. I'm working full time and feeling good, other than some very minor side effects from the infusion. Side effects that aren't too bad and are fairly predictable. Because I am doing as well as I am, a stem cell transplant is off the table for now. I did harvest (gather) my stem cells in December 2011 and they are lying frozen at Cedars Sinai. The treanda beats up my bone marrow, so my stem cell making capabilities have been permanently damaged. Nonetheless, with no transplant in our view, it made sense to harvest my stem cells while I had enough to be harvested.
And that brings me to today. We're coming up on two years. I'm feeling good. Mentally, this can be a challenge, but I'm pretty happy with where I am at. Time flies. There are times I forget I have myeloma, kind of like Jerry Kramer not knowing he had a splinter in the gut. And that's it, that's my story.
We've gained some traction with our petition for Oral Parity. The Senate has now proposed a bill that mirrors HR 1409. Fresh off the pr...