From Canada – Stu Boland: What More Could I Hope For?
Editor’s Note: In earlier posts on this website, Stu Boland shared his experiences as a new WM patient, beginning in 2002 and updating in 2015, featuring his various treatments and describing his life activities, continuing through his autologous stem-cell transplant procedure in 2015. Immediately below is Stu’s most recent update (Jan. 2021). Below that, you can find Stu’s original story and 2015 update.
I posted my original story and then followed with an update in January 2015. I described how I have been fortunate to have encountered so many excellent medical specialists. I have also had the good fortune of an incredibly supportive and understanding caregiving team that includes my wife, Nancy, my family and our friends and neighbours, and the IWMF/WMFC. Having good support makes it so much easier for a less than healthy person to achieve the crucial “can-do” attitude – an attitude that I feel really helped me in my recovery, a recovery I hope is long term.
To reiterate, I began to experience symptoms in 2002. A fortuitous referral to an excellent hematologist/oncologist in 2004 led to a bone marrow biopsy and a WM diagnosis in September of that year. I underwent chemo (cyclophosphamide, fludarabine, rituximab and prednisone) starting in April 2005. Remission allowed a return to an active lifestyle. However, symptoms returned and I required chemo again in September 2009. The cocktail this time was cyclophosphamide, vincristine, rituximab and prednisone. In the spring of 2015, some of my symptoms were returning, along with worsening lab reports. After lengthy consults with staff of the Tom Baker Bone Marrow Transplant Clinic in Calgary, Alberta, we decided to move forward with an autologous stem cell transplant. Chemo – consisting of cyclophosphamide, bortezomib, dexamethasone and rituximab – began almost immediately, and continued through the summer. A bone marrow biopsy and lab tests in the late summer indicated another remission in the cancer burden, so stem cells were successfully harvested.
On 15 October, 2015, following the administration of melphalan to destroy all of my existing bone marrow, my harvested stem cells were reintroduced, and I was told that at 67 years of age I had just had my new birthday. Over the next 2 ½ months I could recognize improvement almost daily. Post-transplant, I had to undergo IVIG treatments. This procedure required going to the hospital for a couple of hours every four weeks.
As I said in earlier posts, my wife, Nancy, and I are avid travellers. IVIG schedules interfered with being away from home. Upon investigation, we determined that in fact subcutaneous administration of Gamma globulin could not only eliminate the need for hospital visits, but it was perhaps better for my body. We took the training required to do self-infusions, and we were then free to go where we chose. Not to brag, but we have taken advantage of that freedom with numerous trips: a one-month European river cruise and an extended stay in Prague; a five-week driving trip through Ireland, Scotland and England; a Kenyan Safari; a one-month ocean cruise from Valparaiso, Chile to the Antarctic, to Buenos Aires and then a side trip to Iguazu Falls; a Polar Bear Safari to Churchill, Manitoba; a one-week excursion on a relatively small yacht around the Galapagos Islands followed by a trip to Machu Picchu; and a National Geographic Eco Tour of Costa Rica – coast to coast. We actually rounded the Horn of South America on my 70th birthday. Additionally, each summer we go to our remote, lake-side cabin in North Western Ontario (1200 miles from home), where we live “off the grid” for over two months. Although we have installed a very small solar power system to give us a few lights and the ability to charge our devices, we cook on a wood-fired cookstove, use an outhouse, and do plenty of physical work while we enjoy nature. When home, and when possible, we still try to get out on our motorcycles – a Harley and a Can-Am Spyder.
We have been amazed and extremely pleased to learn that all international airports and airlines we have travelled through/with, when shown the letter from the medical authorities, had no problem with me carrying all of my blood product and administration supplies on board the plane. And the hotels we stayed at were willing to dispose of the used vials, syringes and needles. Not once was there a problem or a charge.
Following our return from watching the polar bears I had my regular lab work and appointment with the doctor. The results showed that my own body was producing the necessary blood components – I no longer needed to do my weekly subcutaneous IG infusions. They were stopped in October 2019 – four years post-transplant. Lab results since then have been “normal”. At almost 73 – or over five years since my “new birthday” – I feel great. With COVID restricting travel this winter, we will stay home and attempt to stay healthy in Calgary, and plan future trips.
While I don’t think that my experience is anywhere close to being the norm, it is proof that there is hope. Just because we’ve been diagnosed with a blood cancer does not mean our days of a good lifestyle are over. Nancy and I have certainly experienced “bumps in the road” in our journey with WM, but we have learned to live with them. We’ve learned what is possible and what is more difficult, and we’ve learned to make the most of every moment. Nancy has become very adept at using our timeshare points to at least partially pay for trips we have made worldwide. More are already booked, and some others await an all-clear from the COVID threat.
Original Story of Hope: From Canada – Stu Boland: A Positive Attitude and an Active Lifestyle
Some of you will know me — a 68-year-old WM patient living in Calgary, Alberta, Canada – from my earlier story posted on the IWMF website in January 2015. In that story, I describe how my wife Nancy and I have been leading an active lifestyle, especially since retiring about six years ago. We are avid downhill skiers and love to tour on our Harley Davidson motorcycle. We spend the summer months at my family cabin on a lake in northwestern Ontario where we must cut and split firewood to “feed” the cook stove, bathe in the lake, use the outhouse, and carry water in pails. (No comforts of the big city!) Since retirement, we have spent over 40% of our time away from home – hiking, riding, skiing, sightseeing, and enjoying new places in Canada, the US, and Europe. Life has been very GOOD!!
In my original posting, I shared the following details of my WM journey:
- In 2002 I started to experience some signs and symptoms that I was not used to. I had a terrible cough and was losing weight, no matter how much I ate. I was anaemic. I suffered with lack of energy.
- I saw my family doctor on numerous occasions and was referred to other family doctors, with no satisfactory result.
- I was referred to an internal medicine specialist to deal with the cough, which had by this time caused rib damage on two separate occasions.
- The specialist ordered numerous tests – nothing was conclusive except that my blood test reports were something he had not seen before.
- I was referred to a hematologist-oncologist.
- By now, besides the other symptoms, I was also suffering from severe night sweats.
- The hematologist-oncologist told me that he believed he knew the problem and ordered a bone marrow biopsy for that week.
- By this time the “clock” had run to late August of 2004. While we waited for results and the diagnosis, Nancy and I did one of our best hikes ever – a very strenuous, all-day trip in the mountains of southern Alberta on Labour Day weekend, 2004.
- My diagnosis came the following week, and I heard what I had not expected to hear – the statement “you have cancer.” It was treatable although not curable. And it had a HUGE name: Waldenstrom’s macroglobulinemia!
- This cancer was different from many others – it did not require immediate treatment. I was put on a “watch and wait” program.
- I did what many others would naturally do – I turned to the Internet.
- I found the IWMF, joined the Foundation, got printed material, and educated myself as best I could. At that time I was unaware of other patients in Calgary with the disease.
- Soon after diagnosis I went for a walk with my two dogs. As luck would have it, I ran into a friend who lived close by. Cam got his dog, and we continued the walk together. As we walked, I told Cam of my diagnosis. Cam’s response: Strange thing about that – I have been diagnosed with the same disease! Very coincidental, given the infrequency of occurrence.
- I continued to be monitored by my oncologist, having monthly blood work.
- In April 2005 I told my oncologist that I was really struggling with how I felt: my low energy level, my cough, the night sweats, and the weight loss. At 57 years old I weighed less than I had in high school.
- Treatment began immediately and consisted of cyclophosphamide, fludarabine, rituximab and prednisone.
- I handled the treatment well – other than treatment day, I hardly missed a day of work.
- Recovery was good, and my blood reports were also good. It seemed that the treatment had done its job.
- I continued to be monitored quarterly by my oncologist but did not let this slow me down – I remained active.
- By August 2009 some of the symptoms had returned, and I was not feeling as I should. Blood work and symptoms indicated that treatment must resume.
- Four years and four months after the first treatment concluded, the second treatment began in September 2009 – this time, cyclophosphamide, vincristine, rituximab, and prednisone.
- I handled the treatments well but have had some lasting side effects from the vincristine, primarily slight neuropathy in my fingers and the soles of my feet, but nothing that has deterred me from skiing or hiking or taking long rides on the Harley.
- I have continued to be monitored since treatment ended in December 2009. Although the numbers have crept up, at this point there are no symptoms or blood work that indicates treatment is close at hand.
- In April 2014, Nancy and I hauled our Harley Davidson motorcycle to Flagstaff, Arizona. We set out on a bike trip that was to go through Arizona, New Mexico, Texas, and Louisiana and was to end at Tampa for the 2014 Ed Forum. Our accommodations were about a 50/50 split between timeshares and tenting in KOA Kampgrounds. We had an excellent trip, most often on secondary highways, as far as Rockport, Texas, when a rainstorm washed out some of the roads and the accommodations that we were to use in Louisiana and the Florida Panhandle. Undeterred, we changed our route and returned to Sedona, Arizona. We hiked for several days, and then flew to Tampa to participate in the IWMF Educational Forum.
The Forum was a terrific experience, and it prompted me to write and share the chronology above. It is now a year since the story was posted, and I am here to report that 2015 also has been an “interesting” year. The events that I summarize below began in early April, 2015, while Nancy and I were in Las Vegas, Nevada, on our way home from several weeks of hiking in Joshua Tree National Park, golfing in the Palm Springs, area, and riding the Harley in Southern California. No, we weren’t idling away our time at the gaming tables – rather, we had been hiking nearby in Red Rock Canyon and The Valley of Fire. But then, some all-too-familiar symptoms showed up again. Those symptoms marked the beginning of the next chapter in my WM story, which has now ended (spoiler alert!) with a successful autologous stem cell transplant. Here are the details:
- While in Las Vegas I began experiencing fatigue, a dry cough, and occasional night sweats. It had been about five years since my last chemo treatment.
- Immediately upon our return to Calgary I had lab tests and we visited my oncologist for my regularly scheduled appointment. He performed a bone marrow biopsy.
- All the test results showed elevated counts. That, coupled with how I felt, pointed to more treatment.
- My oncologist asked if we had ever considered, or were interested in considering, having an autologous stem cell transplant.
- Our quick response was: “We know a WM patient who has had a transplant; how do we get additional information?” (That person we knew is Dr. Guy Sherwood – a fellow Canadian, a medical doctor, a WM patient and a very active member of the IWMF).
- A week or so later we were meeting with the head of the Bone Marrow Transplant Clinic at the Tom Baker Cancer Centre in Calgary. Dr. Stewart, and his nurse, answered all of the questions we asked, and provided a thorough review of the process.
- Nancy and I discussed the procedure, weighed the “pros” and the “cons”, and decided that the low risk and the short term discomfort outweighed the alternative – continuing chemo on a regular basis. If I was going to go through with the procedure, I had to do it before I got too much older. At 67 I was already well beyond the average age.
- We made an appointment with my oncologist and advised him that we wanted to proceed with the transplant.
- My oncologist and the specialist consulted and developed a chemo protocol that was to begin in early June.
- The chemo was taken over a twelve-week period. It consisted of weekly bortezomib (Velcade), cyclophosphamide and dexamethasone. Every 4 weeks I also received rituximab.
- Once treatment had ended, I had another bone marrow biopsy and blood tests.
- The results showed complete remission.
- In mid-September, after injecting myself with numerous vials of a drug to promote stem cell growth, I again visited the Bone Marrow Transplant Clinic, had a central venous catheter installed, and two consecutive days of stem cell harvesting.
- On 13 Oct. I was admitted to Unit 57 of the Tom Baker – a unit dedicated to transplant patients.
- I received some chemo (bortezomib) that day.
- On 14 Oct. I was given a heavy dose of melphalan (a.k.a “The Big Gun”). My bone marrow was quickly destroyed.
- On 15 Oct., first thing in the morning, a large team of nurses, lab folks and my frozen stem cells arrived in my room. The process was simple, quick and painless. The thawed stem cells were administered during two sessions that day.
- The team congratulated me – they told me it was my new birth day!!
- Over the next 2 ½ weeks I suffered nausea, diarrhea, fatigue, poor appetite; but these symptoms disappeared quite quickly.
- By the time I was released and home, my energy level had started to recover; and I was conscious of the need to eat well and exercise to further assist the recovery.
- By Christmas I was eating normally and walking about five km (over three miles) a day. My weight was back to normal.
- In early/mid-January I had a CT scan and blood work, followed by an appointment with the bone marrow specialist.
- GOOD NEWS!! No sign of the disease. I was being promoted back to my regular oncologist. The Bone Marrow Clinic folks refer to me as a poster child – more than twenty years older than the average patient, but fully recovered much more quickly than most. They welcome me back to visit, but hope it will be a long, long time before I book an appointment with them.
- Nancy and I are delighted!! I say I feel completely normal – Nancy says I have never been normal! This winter, at 3 ½ months old, we’ll travel by car on a long road trip. We’ll hike, golf, sightsee, visit friends and relatives and celebrate!!
- We’ll return in early April when I will start the process of having all of my childhood vaccines.
- Since getting our good news from the medical team we have made a purchase to use on our next motorcycle trip – a tent trailer we can tow behind the Harley. Atlantic Canada – here we come!!
- On instruction from my dietician, I am continuing with my daily dosage of three squares of dark chocolate – another real benefit!! And yes, life is still very GOOD!
Along with my friend Cam Fraser, I co-facilitate the WM Support Group for Alberta. I strongly believe that a positive attitude and a healthy lifestyle have been to my benefit. Nobody likes knowing that he or she has an incurable disease, but I have adopted the attitude that nothing is going to get in the way of striking things off my “bucket list.” I truly take pleasure in talking to other patients and caregivers about our ability to continue to enjoy our lives and the retirement we saved and planned for.
Stu Boland, Original posting Jan. 2015; Updated Jan. 2016