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Northern Lights: Celebrating A Decade Since Diagnosis
By: Nancy Shamanna; Published: July 15, 2019 @ 6:53 pm | Comments Disabled
It’s summer here in Calgary, and sunshine and showers are alternating. Everything is green, and the gardens are a joy to behold. It’s not too warm; in fact, our daytime high temperatures on the colder days have been only 52 degrees Fahrenheit (11 degrees Celsius).
This is good weather for walking, and my husband and I got out cycling on Canada Day, July 1. We went along the Bow River pathway for a few miles, and really enjoyed seeing nature there. We saw ospreys in a nest on a platform, geese and ducks paddling on the river, and gulls circling on thermal wind drafts. What a lovely way to get some exercise!
This month is full of birthdays and anniversaries in our family. It is the busiest month of the year that way. My husband and I are celebrating our 42nd anniversary this month. I cannot forget, however, July of 2009, when my whole world crashed down around me and I spent that month and August mostly indoors, recovering from back fractures, and starting treatments for multiple myeloma. To be a whole decade on from that summer seems like a miracle to me now!
If I could back up a little to the months preceding my diagnosis, some strange things were happening to me that I did not understand. Being diagnosed in 2008 for osteopenia at the relatively young age of 57, and taking a low level of the bisphosphonate Fosamax (alendronate) for that, was my first indication that I wasn’t very healthy. Then, aches and pains in my ribs and back intensified, and I had low back pain that would not improve with analgesics or muscle relaxants. Eventually my vertebrae started to compress.
I remember marching in a parade, playing bagpipes, in early June when I felt something give away in my mid back area. Then, as the month wore on, pain got worse in my lower back. My family doctor did not put the facts together to suspect multiple myeloma. She was very conscientious in testing me for other cancers, such as breast, colon, and melanoma, though. It was through having a general check up that we discovered the osteopenia, so I was on some early treatment against bone damage.
Eventually, over the July 1 to July 4 long weekend in 2009, I just collapsed in terrible pain and could not get up on my own. This of course set off alarm bells as to what was the matter with me. My husband, a family doctor, and one of my daughters, a medical student, tried to help me. My daughter exclaimed in a Eureka moment: "There are some blood tests that Mom needs to have!" She had been studying bone health at medical school and recognized that this could be multiple myeloma. So we rushed to get those tests done and get an appointment with a hematologist. Sure enough, it was multiple myeloma, and my new oncologist immediately started me on a different bisphosphonate treatment, Aredia (pamidronate), after confirming the diagnosis with skeletal X-rays and a bone marrow biopsy. I was scheduled to start induction therapy in August.
I was confused and depressed about this turn of events. At that time, from everything we read, the prognosis for multiple myeloma was quite poor; survival seemed to be measured in months, not years. My family and friends rallied around me and did their best to cheer me up.
In the autumn of that year, I had four cycles of Velcade (bortezomib) plus dexamethasone. I struggled with side effects from the treatments; I experienced sleep deprivation, gastrointestinal problems, and changes in appetite at that time. Gradually I realized that if the drugs I was taking were strong enough to kill the myeloma cancer cells, then they could have strong side effects also. After that, with all of my subsequent treatments, I braced myself for side effects and came to accept them as part of my cancer journey.
Later in the fall, I was prepared to receive an autologous stem cell transplant. I was scared and it took all my courage to sign on for that. I could barely imagine having my bone marrow destroyed and then re-populated with my own stem cells. However, it was a highly recommended procedure, and many patients went through with it, so eventually I decided to do it. The stem cell harvest went well, although I lost my hair from the cyclophosphamide and also suffered pain in my bones as the medications to boost stem cell production took hold. A day in the apheresis unit yielded enough stem cells for two transplants, although I have only had one.
In January 2010, after a break for Christmas (when I sported my new wig!), I had the transplant. My stem cells, which had been frozen in liquid nitrogen, were thawed and reinfused through the catheter in my chest. Comparing my transplant experience with those of other patients, I think mine was average. I was neither so ill that I stayed in the hospital for a long time, or so well that I had no problems. The main problem I had was diarrhea that was so severe I was put in an isolation ward in the hospital for two days to be tested for a em>C. difficile infection. Fortunately, that turned out to be negative, and the problem was thought to be a side effect of the Neupogen used to boost my blood counts right after the transplant.
I recovered after three months, and 100 days post transplant, my catheter was removed. Since I was still not in a complete remission, I took Revlimid (lenalidomide) at a low dose for about a year after that, which put me into a complete remission.
From 2011 to early 2014, I didn’t take any myeloma medications. It was a carefree time for me and my husband, full of activities and adventures.
In the spring of 2014, I started to relapse, slowly but surely. In October 2014, I started treatment again, on the highest dose of Revlimid (25 mg), in combination with 20 mg of dexamethasone per week. I was more careful this time to try to control the side effects of those drugs. I responded well to the treatment, and once again I got very close to a complete remission.
In the meanwhile, I continued to have annual checkups with my family physician. In 2016, I had a feeling that I should have an annual mammogram, not a bi-annual one, since studies showed that there is a higher than average rate of cancer caused by taking Revlimid. My doctor kindly obliged me, and the mammogram showed signs of breast cancer. Since I would now be treated for this secondary cancer with surgery and radiation, my oncologist suggested I go off of myeloma treatments for the time being. This proved wise, since the treatments for the breast cancer were quite intense.
To my surprise, the myeloma did not come back quickly. It was not until last fall, November 2018, that my M-spike started to increase, although at a slow pace. So, once again, I started treatment with Revlimid and dex at a low level (10 mg of Revlimid, 21 days out of 28, plus 10 mg of dex weekly). I wasn’t really very happy with this development, but it shows how difficult it is to completely shake off myeloma. I stayed on with that treatment until January of this year. After discussions with my doctors, I decided to try going off treatment again. When and if I fully relapse, I may be able to try one of the new myeloma drugs that have recently been funded here. Just to be safe, I am checked monthly, in case the myeloma starts to really take off on me again.
Right now, I am in a hiatus, another break in the seemingly unending treatments for myeloma. To have had this six months off of treatment has given me a chance to regain my energy. Over the last ten years, I have been off of treatments about half of the time, and I am very grateful for that.
I also am grateful, of course, for the treatments I have received that have made it possible for me to be here ten years after my diagnosis.
It seems I have plenty to celebrate this month.
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The quotation for this month is from Lil Xan (1996 - ), American rapper, singer, and songwriter, who said: "It gets better: there's a light at the end of the tunnel. It may take one day, it may take ten years. But one day, you will find happiness if you manifest it. Put that energy out, and it'll come back."
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here [1].
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
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