Derek Johnson

multiple myeloma coach since 2023

I was diagnosed in 2019 at 34 years old, on my grandmother’s birthday. Though, symptoms were compounding for over 9 months. I had some cough and congestion that held-on for 1 1/2 months. Then I had extreme eczema on my hands which made it apparent my immune system was starting to go haywire. Finally, leading-up to diagnosis was extreme back pain and 1/2 hour long back spasms. Hindsight is 20/20. Obviously, I shouldn’t have gone 10 years without a blood test. With that in-mind, perhaps my Myeloma could have been caught sooner instead of 90% Myeloma concentration found at the ER with a subsequent 2 1/2 week hospital stay due to uncontrollable pain. Now, I advocate for anyone with odd symptoms to schedule a blood test as it could save their life! Though, it’s funny looking-back as my pup had regular blood tests… we’re educated that’s the best way to catch major health issues for our furry friends, right? My introduction to Myeloma and cancer was not gentle. I was kicked-into the fire pit. But thanks to close family support, my pup, and fortunately an A+ oncology team I’ve made it out the other side. As I was getting past the emergency phase and into the maintenance phase there were some real shockers. I learned that I was outside the normal age-range for this cancer. I learned nearly 6months after diagnosis that there is no cure. Thus, I’d be on cancer meds for the rest of my life. Finally, why would I need a stem cell transplant? I had a successful stem cell transplant experience in July of 2020. I’ll admit it was a rough ride, but the hospital food was beyond excellent and made it that much better. Having Cancer sucks. There’s no other way to put it. No one wants to receive news they or a loved one has cancer. Though, thanks to modern medicine, Multiple Myeloma can for the most part be kept under control and maintained. Sure, there may be some physical limitations due to cancerous effects on the body and/or side effects from medications. But thanks to new cancer medications, one can still live a life worth living with some alterations. Don’t allow this cancer to get the best of you…

Michele Glasser

multiple myeloma coach since 2022

I am 75 years old and have been a Myeloma survivor for 19 years (and also a breast cancer survivor for 27 years). I was diagnosed in 2003 with IgG kappa myeloma, and have been incredibly blessed with being able to live a normal, active and joyful life all these years (except for brief time outs for SCT and Car-t therapies). I had no symptoms when I was diagnosed. My diagnosis resulted from my internist noticing that I was anemic (although I didn’t have any symptoms). Since diagnosis in 2003, I have had many multiple agent therapies, including thalidomide, IMDs, velcade, cyclophosphamide, elotuzamab, daratumab and dexamethasone. Thankfully, my myeloma is only in my bone marrow and blood, and I’ve had no bone disease. Most recently I participated in a Car-t trial which put me in complete remission for the first time in 19 years, and that remission is continuing after 2 plus years. I am a very positive person and I think that has really helped me in dealing with the disease. Whenever I talk to other cancer patients I always tell them to have hope and stay positive. I also think staying as active as you can is a big factor. I walk several miles every day and play golf several times a week. I have a wonderful support system with a husband who has been my rock, good friends, and supportive family. We have four children, six grandchildren and one great grandchild. One of the goals I set early on was to be here for all of their graduations, weddings and lots of happy family times together. And, I have been. I am fortunate to have been retired the whole time I’ve had myeloma, giving me plenty of time to attend to my disease and do all the things I enjoy doing (travel, golf, bridge, mah Jongg, and more). I became a coach to offer support, encouragement and hope to other myeloma survivors.

John Bailey

multiple myeloma coach since 2023

I'm a retired public health physician. I was diagnosed in 2003 with IgG kappa myeloma. Initially I had a tandem transplant as part of a clinical trial with two years of maintenance therapy and remained in remission for 15 years. In 2018 I relapsed and had a 3rd transplant using the remaining cells harvested in 2003 with followup medical therapy and remained in remission for another four years. In early 2022, I had a second relapse presently being treated with daratumimab. All in all, I have been on several different treatment regimens over the years due to side effects such as rashes and neuropathy and not due to becoming refractory to the treatments.I am fortunate to have survived myeloma for twenty-one years. Treatment for that long has taken a toll of course but I remain in relatively good health for an 81 year old, exercise regularly, try to eat sensibly, stay socially active and enjoy life every much. I am encouraged by the rapid progress in myeloma therapies and would be happy to talk with you if that would be helpful.