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
- 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.
- 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.
- 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.
- 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.
- Educate yourself- there are so many new treatments that there is hope.
- Fundraise and make as many people aware of the disease as possible. That can only help.
- Working also helps. I have worked all through the trial and it keeps my mind off it.
- 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.