Living with Multiple Myeloma cont'd

I underwent 4.5 months of CyBor D chemotherapy (Cyclophosphamide, Velcade and Dexamethasone) and after further testing revealed that I did not have any genetic translocations which would prevent me from undergoing an autologous stem cell transplant (usingmyownstemcells),IwasthentransferredtotheBoneMarrowTransplantClinicatTBCC to prepare for that procedure. This included another bone marrow biopsy, sub-cutaneous injections to stimulate growth of stem cells so that they would overproduce and push each other out of the bone marrow and into the bloodstream, having my stem cells harvested by an apheresis machine, undergoing a high-dose chemotherapy (Malphalan), and then receiving my stem cells back into my body by another apheresis procedure, which happened on November 16,2018.

NOTE: Let me preface this next little bit by saying that I also have Crohn’s Disease. One of the really bad side effects of the high-dose chemo is what I call the Big D (diarrhea). This is where the process plays with your head a little. Each patient reacts differently to (1) the Malphalan; and (2) the actual stem cell transplant. We have a wonderful system here in Calgary. Once you receive your cells back, they let you go home, but tell us to return back to the hospital if you startfeelingill.Theyassignyouaroombecausetheyknowsomethingwedon’tknow.

At this point, the Malphalan hasn’t really kicked in, and most patients feel OK. Some people do not have to return to the hospital, and can recuperate at home. I believe I lasted 3 days at home before I started to feel unwell. Off to the hospital we go, where I checked into my room on our famous “Unit 57” at the Foothills Medical Centre.

As the Malphalan destroys (hopefully) all remaining Myeloma cells, the Big D can be a huge side effect. Combine that with Crohn’s Disease and I can truly say that despite some of the best care in the world (our nurses are second to none), I spent 2 very miserable weeks on Unit 57. Chewing ice was recommended while receiving the high-dose chemo to prevent mouth sores; however, that did not prevent me from developing a sore throat during the first week which was so horrific I couldn’t swallow anything. The only thing that helped with the pain was Fentanyl. It also scarred myvocalcordswhichhasaffectedthetimbreofmyvoice.

Another side effect of the chemo for me was auditory hallucinations. This was a very disorienting and very realistic experience. Had I realized it at the time, I could have written down some pretty dark lyrics of songs from a concert which (I was convinced) was being performed right outside the hospital. Alas, I didn’t realize it was a hallucination until after the fact, and I lost my chance at making millions of dollars as a singer/songwriter. It’s probably just as well my voice was altered tosomethinglessthanmelodious.

Living with Multiple Myeloma cont'd

After a 2-week stay on Unit 57, I was able to go home where recovery continued. I began to feel much stronger and my stamina increased. In March 2019 I saw my Oncologist for a follow-up and found out that the stem cell transplant had been successful - I was in Complete Recovery. I was told that patients could expect between 2 – 5 years of remission after transplant before relapsing. That was good enough for me. I just wanted to get back to living life. I was put on a maintenance regime of Revlimid (lenalidomide), 10mg every day for 3 weeks a month, followed by 1 week off the drug. Every month I had bloodwork drawn, and every month that there was no detectable M-Spike (monoclonal protein spike) was a blessing. Then, in November 2023, almost 5 years to the day after the stem cell transplant, my Protein Electrophoresis results showed an M-spike of 4, and my free light chain numbers jumped to 267. Here was the relapse that I knew was coming. We all know this is how it works. I thought something might be off because I had been experiencing fatigue again and kind of expected it, but it’s a little shocking when that shoe drops ...

Right away my Oncologist and I spoke and decided upon a course of action. We would wait to see if the bloodwork showed a steady increase in Myeloma activity, or if it leveled out. In December, January and February, the numbers rose steadily. In March 2024, I began a new treatment regime called IkD (Isatuximab, Carfilzomib and Dexamethasone). After the first cycle (days 1, 8, 15 and 22 of each 4-week cycle), my M-spike dropped to 4 and my free light chain number dropped to 17.

The regime changed for Cycle 2. On Days 1 & 15 I receive Isatuximab, Carfilzomib and Dex, onDay8IreceiveCarfilzomibandDex,andIhavetheweekofDay22off.BloodworkafterCycle 2showedanM-spikeof2.It’sworking!

This treatment regime will continue until this treatment stops working, and then it will be on to thenextlineoftreatmentavailablehereinAB.

Ourtravellingisgoingtobealittlecurtailed,butsomehowit’sgoingtohappen,becauseit’sone ofmyinspirationsforpushingthroughthisdiseaseandgettingonwithlife.

My other main inspiration is my family, and especially our grandchildren. While I was preparing for mystem cell transplant in November 2018, my biggest concern was that my daughter was pregnantwithourfirstgrandchild,andIdidn’twanttomissanything!ShewasbornonOctober2 byC-section,andIwasintheORwithmydaughterwhenshewasborn(andwasthefirstperson toholdherwhenshecameintotheworld!!).OnJuly4,2020,ourgrandsonwasborn,andadded to the joy in our lives. Also in 2020, amid a full-blown pandemic my sister and her husband moved from Ontario to live in Calgary, AB, and we get to spend a ton of time together after having lived our adult lives up to then in different provinces. We celebrate everything at every opportunity.HaveImentionedthatwebothlovetoshop??

In life, I choose not to focus on Myeloma. It’s there, and I know it. Instead, I focus on enjoying timewithfamilyandfriends,travelling,reading,gettingbacktomyoutdooractivitieslikewalking and cycling, advocating for Myeloma patients in various arenas, and just living. I have always maintaineda“glasshalffull”attitudeinlifeandthat’snotgoingtochange.

Living with Multiple Myeloma cont'd

I am encouraged by the great strides made in research and treatment development, some of which is done right here at the University of Calgary by our very own TBCC clinicians and U of C researchers Dr.Nizar Bahlis, Dr. Paola Neri and their Myeloma-specific research team. They have impactedthelifeexpectancyandqualityoflifeforMyelomapatientsinaverypositiveway Iam encouraged by the number of new drugs that have come down the pipeline and have been approvedforMyelomatreatmenthereinAlberta

I am encouraged by the work done by Myeloma Canada and all of the support groups across Canada in helping patients understand Myeloma, providing up to date educational and research resource materials and helping spread awareness of Myeloma, which is the second-most commonbloodcancerbutisrelativelyunknownuntiloneisdiagnosedwithit!

I am especially proud of our local Myeloma support group, the Southern Alberta Myeloma Patient Society (SAMPS), a non-profit registered charity which fundraises to provide financial supportdirectlytothelocalMyeloma-specificresearchattheabove-mentionedUofClab ToanyonewhohasbeendiagnosedwithMultipleMyelomaIwouldrecommendlearningasmuch as you can about your personal diagnosis, finding a good support group, follow the research in thisareaofbloodcancerbecauseitisveryinspiringandaboveall,maintainapositiveattitude. Onwardandupward!!ToLife!

I am a retired Legal Assistant/Paralegal. I was diagnosed with Multiple Myeloma in May, 2018. I'm a volunteer Board member with the Southern Alberta Myeloma Patient Society. and a member of Myeloma Canada. Where possible I help advocate to ensure that Myeloma patients' voices are heard, and to increase awareness of Multiple Myeloma and its effect on individuals living with this incurable disease. My husband, daughter and her partner, our 2 grandchildren and Sophie (our Maltese) form the center of my university, but my husband and I make time to travel when we can, and just enjoy life through photography, writing, reading, various crafts and gatherings with family and friends. The occasional glass of wine or scotch never goes unappreciated either!