Please listen to Tim’s song here .
My Waldenstrom’s (WM) story officially began in January of 2018, two days after my 70th birthday. Happy Birthday Tim! Unofficially, I believe it began many years – or possibly, even many decades – before that. I first sought medical attention for what have come to be understood as Waldenstrom’s-related symptoms about twelve years ago, when the shooting pain in my feet became so bad that it was waking me up at night. My primary care physician (PCP) at the time was unable to ascertain a cause for the pain, and a referral to a podiatrist eventuated in a diagnosis of peripheral neuropathy and a prescription for gabapentin. This medication provided me with substantial pain relief in general, as well as helping me to sleep better and an overall improvement in my mood.
During the ten or so years before my official diagnosis with WM, I also experienced additional symptoms, which I now understand to be WM-related, but that, at the time, I simply attributed to getting older. These included overall fatigue, occasional night sweats, and severe nocturnal leg cramps. Eventually I complained to my new Kaiser PCP that my feet, which were still rather painful, felt like numb stumps at the ends of my legs when I got up in the morning. After a brief pause, she said, “I see peripheral neuropathy all over your chart, but it doesn’t look like anybody has ever really done a work-up on it.” And thus began my Waldenstrom’s journey.
After asking me an endless list of questions about my history, my PCP posited that the most likely cause of my neuropathy was my alcohol intake, since I had been a fairly consistent drinker since my early 20’s. While I didn’t relish the idea of stopping drinking, this seemed like a relatively simple cure if that was indeed the case. Beyond either stopping or substantially cutting down my drinking, my PCP recommended an extensive battery of blood tests. Over the next few days, the blood tests came trickling in, all of which were in the normal range. Then, after about a week, I got a call from my PCP telling me that one of my tests was high, and could I get it redone. I promptly did, and later got a call from her telling me that my IgM was well outside of the normal range, and that she was referring me to a hematologist. At the time, I had no idea what a hematologist was, so imagine my shock when I arrived for my appointment and saw that it was at the ONCOLOGY CENTER!
My appointment with the oncologist was rather uneventful, and after a brief physical exam and another endless barrage of questions, I was referred for a full body scan and bone marrow biopsy (BMB). The results of the body scan quickly came back negative, and I anxiously awaited the phone call with the results of my BMB. After about two weeks, I got the call from my oncologist and was told that I had this rare blood disease called Waldenstrom’s macroglobulinemia. He said that while my IgM was much higher than normal (1,660 – almost ten times higher than high-normal), it wasn’t sufficiently elevated that it was likely the cause of any of my symptoms, including my neuropathy. Therefore, it was his recommendation that we “watch and wait.” While the thought of chemotherapy or other invasive treatment was certainly not appealing, the thought of doing nothing while a cancer infested my blood, was terrifying. Feeling less than satisfied, I headed home to begin my own search for more and better information.
Many hours of research on the internet led me to two sources of information that proved to be life-savers: the Waldenstrom’s Facebook page and the IWMF website. I spent much time devouring the data these resources provided, reading other WM patients’ accounts of their experiences with their PCPs and oncologists, viewing videos of WM experts speaking at conferences, and reading many of the studies that have been conducted on WM. With this information in mind, I called my oncologist and questioned him again about my neuropathy, which was getting worse and spreading into my fingers. During this consultation, he advised me of a general opinion he held about WM: “The only difference between Waldenstrom’s and other lymphomas is how often you follow it.” I had seriously begun to question the level of expertise my oncologist had with respect to WM, and I asked him, “How many Waldenstrom’s patients do you have?” He quickly replied, “Enough.” I again asked, “Really, three or four or more than twenty?” He became angry and said, “I’m not going to go through all of my records and find out exactly how many Waldenstrom’s patients I have.” That was the last conversation that I ever had with this oncologist.
I went back to my PCP and told her about my experience with the oncologist and my concern about my worsening neuropathy. She referred me to a neurologist, who conducted an electromyography (EMG) and ordered another series of blood tests. The results of her examination provided the answer I was looking for. My IgM was associated with a rare autoimmune variety of peripheral neurology known as Anti-MAG (which stands for Anti-Myelin Associated Glycoprotein Peripheral Neuropathy). This means that while my IgM was not particularly high, it was particularly virulent and was destroying the myelin sheathing around the nerves in my legs. Left untreated, I would be headed for a wheelchair in the not-too-distant future. She referred me to an oncologist in San Francisco with whom she had previously worked on a number of difficult cases.
Meanwhile, my own research had led me to understand that very few oncologists or hematologists in the community know that much about WM, and I came to the conclusion that if I was going to put my life in someone’s hands, I wanted them to really know what they were doing. This led me to the Dana-Farber Cancer Institute and specifically to Dr. Jorge Castillo. I found that for $450 and one appointment with Dr. Castillo each year, he would supervise my treatment in cooperation with my local oncologist.
The rest, as they say, is history. My new oncologist was delighted at the prospect of collaborating with an internationally recognized expert, and after flying out to Boston from San Francisco to meet with Dr. Castillo, I immediately began a round of rituximab infusions. While this was helpful and significantly lowered my IgM, Dr. Castillo was looking for “a deeper response.” Consequently, that treatment was followed by a round of therapy that combined bendamustine and rituximab, which got my IgM into the low 300s and only slightly above high-normal. Since then, I have been on quarterly rituximab maintenance therapy.
So, after all of this, how am I feeling? I feel great! While my neuropathy is still there, it has improved substantially, and I have been able to decrease my gabapentin dose by one third. I haven’t had any night sweats or leg cramps, and my energy level – though not what it was when I was younger – is greatly improved and probably higher than that of the average 72-year-old. I meditate and do yoga daily, go to the gym (pre-COVID!) and walk my dog, Mr. Mojo, over two miles a day. I am semi-retired and spend most of my time working in my wood shop, gardening, hanging out with my wonderful wife or playing in my music studio.
Speaking of my music studio, after I was diagnosed, I wrote a little song about WM. Initially I wrote it as an upbeat way to tell my huge family about my condition at a Thanksgiving family reunion. I recently posted the song on the Waldenstrom’s Facebook page as well as on YouTube. While I was initially hesitant to post it, concerned that other WM’ers might feel I was making light of the disease, I was pleased to find that it was greeted with great joy and delight by the WM community, without any negative responses. If you would like to see it on YouTube, CLICK HERE.
Thanks so much for getting this far, and best of luck to you in your journey. If I have one bit of advice for you, it is this: “Listen to your body, and do your own research!”
Mill Valley, CA