Meet SMM Patient & Clinical Trial Advocate Gina Spencer from Canada (She gives great coping tips!)

BY GINA SPENCER I am Gina Spencer and I live in Toronto, Canada with my boyfriend who I have loads of fun with. We love to travel, go out for dinner, to the theatre and movies. We also love bike-riding and just discovering new things about our city and the world. My own hobbies are swimming, working out, reading, travelling and gardening. I had a dog but he died and I do miss the comfort he gave me. I also volunteer with kids from a nearby high-risk neighborhood and just love them. I also have two kids who are in their 20s. I was diagnosed in January of 2015 at the age of 61 with smoldering multiple myeloma (SMM). At the time, I had no symptoms other than low hemoglobin. My general practitioner was concerned and did other testing which showed an elevated M-protein (it was 20 at the time). So they did other testing and found my FLC was 99, my bone marrow was 11-14, but MRIs, x-rays and CAT scans showed no lesions. I am currently in a clinical trial for SMM patients using daratumumab. I am in the B section of the trial, which means I received the infusion once a week for eight weeks, and now will receive it once every eight weeks for the next three years. Physically I feel pretty good. I was quite affected by the drugs in the trial. For the first three days I was very high from the dexamethasone that they gave me in conjunction with the daratumumab, and then I would crash for about two days. I was very tired and sore. I really liked the dex because it made me happy and I was able to get a lot of work done. However, I was awake at very weird times of the night – but very productive. My diagnosis was like a bomb being dropped in the middle of my life initially. I was an emotional wreck for the first couple of months because I had to go through more testing to find out how affected I was. I can remember dancing around after my doctor – a hematologist/oncologist - told me I had extremely low risk SMM. However, that all blew up a month later when I had an interview for the trial and they said my FLC ratio was so high I was one point away from being diagnosed with active myeloma. I did not chose the trial immediately because I didn’t want the inconvenience of it, and was scared of the needles and what the drug might do to me. I talked myself out of it for a long time but I knew I should be doing everything I could to stay alive for as long as possible for my kids. It wasn’t until this March that my hemo/onc told me my M-protein was 26 and that I was going to get it sooner than later that I signed up for the trial. I thank God everyday that there was space left and that I met all the criteria. In fact, my FLC had dropped greatly and I was eligible. Once I was doing something about my disease I felt so much better. I hated that I knew about it but was doing nothing. With all these ups and downs though, it’s not all bad. It has really encouraged me to really live life. I have started traveling and just love it. I don’t think anyone will ever appreciate the sun on the Grand Canal in Venice like I did last year. I am much more adventurous. I’m not as scared of life as I used to be. I also have met wonderful people at Princess Margaret undergoing treatment. Whenever we speak at the end of the conversation, they always take my hand and wish me the best. I do the same back. It is very intense and rewarding. Tips for Coping

1. A wonderful psychiatrist I have been seeing who just tells me to take it one day at a time. She has calmed me down so much. I recommend seeing somebody to cope with it.
2. Exercise is high on my list too and makes me feel so much better. I didn’t exercise much during the eight weeks of the trial and I really missed it.
3. If I get really stressed I take an Ativan, but not very often. The Facebook page has helped immeasurably as well. At first, I was too scared to read about myeloma, but I have found that educating myself empowers me. I have kept my diagnosis a secret from everyone but a few friends and my family. That helps me pretend that it’s not real.
4. Get into a trial – it can’t hurt. It might delay it long enough that a cure or at least many more treatments will be developed.
5. Educate yourself- there are so many new treatments that there is hope.
6. Fundraise and make as many people aware of the disease as possible. That can only help.
7. Working also helps. I have worked all through the trial and it keeps my mind off it.
8. I just love rock concerts. So in the past year, I’ve seen a number of my favorite bands, several times each. They include Van Halen, Alice Cooper, Iron Maiden, Pearl Jam and Whitesnake. Not only do I just love their music it really makes everything so much better. Hearing Whitesnake sing ‘Still of the Night’  or Alice Cooper perform ‘Halo of Flies’ is a huge stress reliever and gives me so much joy.

I have met people at Princess Margaret with cancer and some with myeloma who have been living with it for years, which gives me a lot of hope. As I say, I am the luckiest of the unlucky, to be in a great trial and to not have any symptoms. I would say though that I keep hoping it’s all a bad dream and I’m going to wake up soon.