My journey with multiple myeloma began 23 years ago in 2000. 

I had blood work done when I had my physical two or three months earlier and results came back showing a low hemoglobin with a comment by the lab, “sticky cells.” 

The comment “sticky cells” raised a red flag and my family doctor ordered more tests and told me something was wrong with the protein in my blood. I had no idea what that meant but I didn’t think it was cancer. I was referred to a hematologist where I was given the devastating news. 

Fortunately for me, I didn’t have any bone lesions and kidney function was normal, but my myeloma protein was high enough that I started treatment within two weeks. In those days induction treatment was VAD – Vincristine, Adriamycin and dexamethasone (dex). The two chemo drugs were given through a PICC (peripherally inserted central catheter) line from day 1 to day 5 of the cycle. It was a continuous infusion so all week I walked, slept, ate, and worked wearing a fanny pack containing a chemo bag. A few years later this therapy was discontinued and patients were getting dex alone as induction because it was found to be just as effective.

Eventually Velcade was added to dex and then it was changed to CyBorD - cyclophosphamide, bortezomib (Velcade) and dex. I had an autologous stem cell transplant a few months after my diagnosis. I was very sick, as was to be expected, but my recovery went well. 

Prior to my transplant, I was just going through the motions and doing what I had to do. After my transplant, it hit me that I had an incurable cancer and may not live to see my children grow up, who at that time were 9 and 12. In 2000, the median survival rate was 3-5 years and some research even suggested 2-3 years – that was really frightening.

Just after my transplant I was asked if I would like to participate in a clinical trial. This was a phase 2 trial looking at thalidomide and prednisone as a maintenance treatment following a transplant and participants were randomized to a 200 mg or 400 mg dose of thalidomide. I decided to participate because the purpose of this trial, besides finding the right dose of thalidomide that patients could tolerate, was to see if this drug, administered as a maintenance therapy, would slow down any relapse of the disease. I was randomized to 200 mg of thalidomide a day which was eventually reduced to 100 mg a day because of mild neuropathy. It was found that 400 mg was too much for anyone to tolerate.

I was very determined to do the best I could. I began reading a lot about foods that fight cancer and modified my diet to a certain degree.

Eventually my family and I adapted to what I like to call a “new normal”. You try not to live too far into the future and live more for today.

Of course, that is easier said than done.

I went back to work six months after my transplant. I took a job-share position which I felt I could manage. My oncologist recommended not working full-time because I may have regrets that I spent the last years of my life working and not taking the time to smell the roses, so to speak.

At one point I thought about going on long-term disability because quite a few myeloma patients do, but in the end, I am glad I didn’t. I had good benefits where I worked, and I ended up working another 15 years before I retired. A variety of circumstances can affect a person’s decision to continue working, retire if they are old enough, or go on long-term disability. You have to make the decision that’s right for you.

A year after my transplant I was introduced to Carolyn Henry through a friend of a friend. Carolyn also had myeloma and wanted to talk to me about my transplant because she was about to embark on that journey herself. Carolyn had been in touch with the International Myeloma Foundation (IMF) and the Multiple Myeloma Research Foundation (MMRF) and passed along some newsletters she had received. At that time, Myeloma Canada didn’t yet exist, and wouldn’t for another three years!

When I was first diagnosed, I had done some reading but found it very depressing. After I started reading the information from the IMF and MMRF and learnt more and about the research being done, I became very hopeful for the future; I wanted to learn as much as possible. 

After the clinical trial ended in 2002, my oncologist recommended I stop taking the drug and wait for the results of the trial. I wasn’t comfortable with that recommendation, so I sought a second opinion at Princess Margaret Hospital. Research about maintenance therapy was still in the early stages back then, and while they didn’t have results from that clinical trial, the doctor I saw did recommend that I stay on the drugs, which I did.

Eventually, I went off prednisone because of the associated long-term risks; it also didn’t appear that I needed to be on it. I am still on thalidomide to this day. I have been extremely fortunate because I only had mild neuropathy for many years. A few years ago, my neuropathy worsened, and my dose of thalidomide was reduced. Fortunately, my neuropathy is still manageable.

Carolyn and I really hit it off, and in 2002 we started the London and District Myeloma Support Group. The group’s purpose was, and still is, to offer support, provide education and to advocate on behalf of others. Since 2009 we have also been involved in local fundraising.  

Carolyn passed away in 2011 and this was very sad for all of us who knew her. She was very focused and driven to help myeloma patients and she really left her mark.

In fact, Celgene’s TEAM award (The Excellency in Advocacy Medal) was renamed after Carolyn when she passed away.

Carolyn and another dynamic woman led the way to getting Velcade (bortezomib) as well as Revlimid (lenalidomide) funded in Ontario. Our group participated in both advocacy campaigns.

We also successfully advocated for a Myeloma Clinic at our hospital which started in 2011.

In 2013 at a conference in Ottawa, our group received the renamed Carolyn Henry TEAM award from Myeloma Canada for our advocacy work in getting the Myeloma Clinic established in London (ON).

The average survival rate for myeloma has been increasing. I have witnessed this first-hand. We have a few members in our group in London (ON) that were diagnosed with myeloma 10 years ago and some even longer than 15 years!

My advice to anyone who has just been diagnosed is to learn as much as you can about myeloma and all the treatments available. Initially, it can be overwhelming to read all the information that is available. It really does take time to gain a good understanding. There is really good information available from Myeloma Canada [myeloma.ca] as well as other reliable websites that the Myeloma Canada site provides links for.

Support groups are a great source of information. If you don’t have one in your community you can ask to be on the mailing list of another support group and receive information from them. I know Myeloma Canada helps people start groups and those of us that have a group are happy to share our ideas. You can also join one of Myeloma Canada's virtual support groups.

I have had the opportunity to attend many Myeloma Canada conferences and Support Group Leader and Advocacy Summits over the years.

I wouldn’t wish this disease on anyone but there has been an unexpected benefit. I have met some of the kindest and most sincere people I could ever hope to meet locally and across the country.

I have seen my children grow up and they now have partners, careers and are buying their first homes. I was able to help my elderly father in his later years until he passed in 2019 and am now helping my elderly mom who is living with dementia.

I am so grateful that I have been here to celebrate the many milestones along the way.

Ev McDowell