Spotlight on Alan Forsey, a Myeloma Patient from Halifax

“I am happy to say that I have been back to work for a year now and that I am considered in very good partial remission.”

It was June 10 th , 2015 and as I was making breakfast for my 11-year-old daughter, the phone rang. It was the Internal Specialist at General Medicine I met with two days previously. As we spoke I said “Multiple myeloma, is that something serious”? His comment was yes, but that it is treatable and the hematology clinic would be setting up an appointment for me within the next 10 days. Of course, as most people would these days, I immediately went to Google to see what multiple myeloma actually was, as it had not come up in any conversation. Needless to say, I was very concerned when I read that first it was a cancer, worse still that it was a result of plasma cells growing out of control in my bone marrow and lastly that it was not curable. How could this be? At the age of 52, eating and living well, exercising regularly and with a happy family life.

Alan Foray pictured with his daughter, Julia

As my wife and I met with our appointed specialist, she confirmed, from my test results, that I had myeloma but she did not know where on the spectrum I was and whether I needed to be treated immediately or not. In order to assess the stage my myeloma was at, a bone marrow sample was taken in her office. Again, more waiting and 7 days later my bone marrow numbers proved I needed to be treated and that I should start the CyBorD (cyclophosphamide, bortezomib [Velcade®)] and dexamethasone) regimen in as soon as 2 weeks. The CyBorD regimen is a widely recognized standard treatment that prepares a patient for an eventual stem cell transplant.

Still somewhat shocked as I had no real obvious symptoms, I considered the importance of the regular physical I had every year with my family doctor. The year before my diagnosis, in reviewing my blood tests in August, my Doctor noticed that my hemoglobin numbers had dropped slightly below normal. He said it was based on a bell curve, but he wanted to re-run the tests. In September, again they came back slightly below normal. He said that as I was just over 50 it might be my new normal but wanted me to get another sample and run the test again. Everything else seemed fine in my life, my energy was good and I continued to run and play sports. However, as I was traveling frequently for work, I did not get to my third blood test again for a few months. After reviewing the results again in January, he referred me to the hematology department at our regional health science center. My doctor did not seem concerned but wanted a specialist to review my blood results. It took until June 8 th  to get to see an Internal Specialist. The specialist said it could be a number of things affecting my hemoglobin including celiac disease or thyroid issues, but these could be ruled out by a blood test. The possibility of myeloma was never mentioned. I started on CyBorD in July for 16 weeks. Every Tuesday was “chemo day” as I swallowed 11 cyclophosphamide pills and had two stomach injections of bortezomib. In addition, I was on the steroid dexamethasone every day during the 16 weeks. Every week seemed to bring a different side effect and I was happy to get through the 16 weeks with confirmation that I would be able to have a stem cell transplant. After 8 weeks of recovery I had a Hickman line put into my chest followed by a couple of days of heavy chemotherapy to try and kill as much of the myeloma cells as possible before being injected for 8 consecutive days with a drug granulocyte colony-stimulating factor (GCSF) that spurred stem cell growth that would spill out of my bones and into my blood. Luckily, I produced enough for up to 3 stem cell transplants.

The day of my actual transplant a month later on February 24 th  was uneventful, as it only took approximately 20 minutes for the unfrozen stem cells to flow back into my body. I was then sent home and told I needed to return to the hospital in 6 days as my blood numbers would drop dramatically and I would need to be in isolation. Once my stem cells started to regenerate enough such that my immune system had recovered, I could go home. I was fortunate that I only had to stay in the hospital for 10 days.  The recovery was slow at first, but I felt better each passing week. It took some time as my body was put through a tough sequence of various drugs to treat the myeloma and also to treat the side effects. I am happy to say that I have been back to work for a year now and that I am considered in very good partial remission. My blood numbers are stable and I take a maintenance drug, lenalidomide (Revlimid®), every day. My energy is still good and I am able to play golf, gentlemen’s hockey and help get our now 14-year-old daughter around to her various sporting events.

Earlier this year, Alan (left) was the keynote speaker at the Canadian Blood Services Honoring our LifeBlood Awards Ceremony, where he had the opportunity to tell his myeloma story, raise myeloma awareness and let individuals know how important giving blood can be to myeloma patients.

I learned that having a support network was key to helping: From my wife, who was my caregiver through the stem cell transplant procedure, to my family and friends who helped with drives to and from the hospital, as well as meals, grass mowing and snow shoveling. You often get help where and when you least expect it. Be open to the support when offered. In addition, there are many reasons to be hopeful as there have been a number of new therapies approved recently and more on the way.  Sincerely Alan Forsey