A Summary of My Multiple Myeloma

Diagnosis

I was diagnosed with Multiple Myeloma on Sept 28, 2022 (age 53). My diagnosis was a result of visiting my general practitioner for the first time post-covid complaining of general fatigue (shortness of breath and high heart rate when exerting). I had been trying to get into hiking shape all summer and wasn't making my usual progress. Given headlines in the news I was self-diagnosing myself with long covid. My doctor suggested that we do a blood panel since it had been a while since we had done one. The panel came back with abnormalities including the fact that I was very anemic (thus the fatigue) and she suggested that she share the results with an oncologist colleague to get her input. The oncologist asked that I come in the following week (not a great sign). And before my visit, through the beauty of Google, using my blood work results, I had narrowed it down to either Multiple Myeloma or Lymphoma. I wouldn't recommend going that route as it's a lot to stew on by yourself… My biggest takeaway is that my gp deserves an award! I've since read many accounts of people who aren't diagnosed for months or even years. I got a jump on it due to her diligence!

Initial Treatment

I was treated at St Vincent (Providence) in Portland, OR from October - February which included weekly visits to get lenalidomide, dexamethasone, daratumumab and also took (oral) revlimid at home. Treatment was fairly well tolerated with my main symptom being brain fog and fatigue. Treatment was successful bringing my Myeloma numbers down significantly. At the time of diagnosis, I had a few small 'shadows' of bone deterioration on my vertebrae that disappeared after the initial treatment.

Autologous Transplant

I had my transplant at OHSU in Portland, OR on March 15th. The prep started on March 4th with self-injections of Zarxio to promote stem cell generation, on March 7th had the trifusion catheter placed in my chest, and then 5 hours of harvesting on March 8th (got enough for 2 transplants in one go). On March 14th I had the first of two chemo (Melphalin) infusions as an outpatient and then on March 15h I had the second dose and was admitted for 16 days.

My main side effects while in the hospital post-treatment were major nausea, vomiting, and diarrhea. Needless to say, my GI did not like Melphalin. I lost about 20 lbs and wasn't able to keep food down for weeks. I had sucked on popsicles while getting Melphalin and I didn't get mouth sores. The first few days in the hospital I experienced major anxiety while waiting for the chemo symptoms to arrive. I don't love hospitals and I think the isolation and anticipation of side effects all contributed to my severe reaction. This took me by surprise since up to this point I had been able to take the diagnosis and initial treatment in stride and be fairly optimistic. I credit family and friends who visited and kept me distracted (thank goodness for March Madness!) as well as the very thoughtful and capable staff at OHSU (and some good anxiety drugs) for helping me get through that experience.

Post Transplant

Home again! Nothing like that feeling… The first 30 days at home being immunocompromised meant that there was very little that I could do by myself but I was very lucky to have 3 caregivers who stayed with me for that time to share in cleaning, pet care, gardening, food prep along with monitoring my condition, taking me to appointments etc... They managed to share the load such that they were able to keep a fairly normal remote work schedule as well as care for me and keep the house running. Part of taking care of the caregivers included having another friend volunteer to coordinate a Meal Train to deliver food periodically for them while they prepared my food under strict guidelines. I didn't have any particular complications with recovery. My appetite was very slow to return. My GI took months to recover and my sense of taste is still a bit affected four months later. My brain fog has continued to improve (especially being challenged as I'm back at work) but I can tell that my memory - specifically my ability to recall words, names etc… in the moment - hasn't fully recovered.

The exciting part is that it worked! After 3 months we rebase-lined (bone marrow biopsy, PET scan, blood work) and I'm officially in remission with no detectable cancer. It's been 4.5 months and I feel great. I'm back to an active lifestyle and back in the garden (it was very hard to be away from that for 3 months, in the spring no less).

Maintenance

I started a low dose of Revlimid (10 mg) at the beginning of July and am tolerating it well (I think I might have minor mouth sores related to it but so far that's all that I've really noticed). I will check in with my oncologist monthly for the foreseeable future.

Gratitude

I am the luckiest unlucky person I know. I have had amazing support from friends, family and medical professionals. I am privileged and have access to excellent healthcare (local experts and heath insurance covered by my employer). I had access to short and long term disability allowing me to be away from work without financial impact. I am young for this diagnosis and healthy otherwise without comorbidities. I have this disease at a time when medical research is at its height and am very optimistic about its future - go science! And given that this disease is twice as common and twice as deadly in underserved populations I'm focused on using my privilege for advocacy going forward. My thoughts go out to all of my fellow patients, hoping for some measure of the support that I've received.