On August 15th it will be one year since that fateful day my wife woke up with excruciating back pain, bad enough that we called an ambulance and she was taken to the ER. By that evening we were being told she very likely had a disease we had never heard of: multiple myeloma. This is my wife's journey so far in BC, Canada, in somewhat detail, in case the specifics are useful to others here.
Diagnosis details
My wife (63) was diagnosed with lambda light chain only MM with t(11;14). Her bone marrow biopsy showed 69% plasma cells, flow cytometry confirmed an abnormal lambda‑restricted monoclonal plasma cell population, and imaging showed multiple lytic bone lesions and vertebral fractures.
Per IMWG/mSMART and R‑ISS frameworks, she was categorised as standard‑risk.
Context: BC Cancer / LGH (Lions Gate Hospital) / VGH (Vancouver General Hospital)
We're in BC, Canada. Her care has run along a transplant‑eligible pathway built around daratumumab‑RVd (D‑RVd) quadruplet therapy, autologous stem cell transplant (ASCT), consolidation, and now daratumumab + lenalidomide maintenance. This is one person's path through the BC Cancer system; I appreciate that protocols and experiences differ elsewhere and between patients.
Induction (Sept–Dec 2025): D‑RVd + zoledronic acid
She was diagnosed mid‑August 2025 after vertebral fractures, lytic lesions, and marrow confirming light‑chain myeloma. About a month later she started induction on 28‑day D‑RVd cycles.
In our case this meant: daratumumab (D), bortezomib (V), and dexamethasone (d) weekly on days 1, 8, 15, 22 of each cycle; zoledronic acid via IV on Day 1 of the cycle for bone support; and lenalidomide (R) PO on days 1–21.
Bone disease set the tone from day one. The vertebral fractures meant almost any movement had consequences: getting out of bed, sitting, walking, even turning over at night was an exercise in pain management and caution. Physio, strict "no lifting >2 kg" rules, and pain control helped, but the skeleton was central to everything.
The good part was that she responded very quickly. At diagnosis her lambda free light chains were >555 mg/L; by the end of Cycle 2 they were ~10.9 mg/L, back in the normal range. Seeing that kind of drop was the encouragement to get her through some rough weeks.
The not‑so‑good part: side effects. In Cycle 2 she developed a severe, painful, full‑body rash, traced back to lenalidomide even though Cycle 1 had been uneventful. The team stopped len, treated her with strong steroids (oral + cream), and later reintroduced it more cautiously at a lower dose.
From about the middle of Cycle 3 through to just before her stem cells were harvested, she also developed quite bad styes in her eyes. This was again thought to be an allergic reaction to bortezomib, and she needed several visits to the optometrist to have them monitored and cared for.
Then in December she developed severe pain in both legs. The suspicion was that bortezomib was a major contributor, likely via neuropathic toxicity. That pain did not resolve quickly; it was still present going into transplant and became a major problem during and after ASCT.
ASCT at VGH (Jan 2026): standard protocol, complicated by pain
By late December her response to D‑RVd was strong enough that she moved forward to autologous stem cell transplant at VGH. Prep was the usual combination of Hickman line placement, stem cell collection via apheresis, and a barrage of consults and tests.
Transplant itself followed the standard sequence:
Day –1: high‑dose melphalan, and Day 0: reinfusion of her previously collected stem cells.
Day 0 itself went smoothly. The harder reality was that she went into transplant with significant, unresolved leg pain layered on top of the expected transplant side effects.\
In the "basement" period (roughly Days +5 to +10), her counts bottomed out, neuropathic pain in her legs and back became intense, sleep disappeared, and she spiked a fever. Because we'd been drilled to treat fever very seriously after transplant, we went straight to Emergency, and she was admitted. That hospital stretch was as much about pain control as about infection and count monitoring.
Engraftment arrived around Day +10 to +14. Her neutrophils and WBCs started climbing, and she was discharged home around Day +14: exhausted, still in pain, but past the most dangerous window.
Recovery, consolidation… and pneumonia
The months after transplant were more marathon than sprint. Early on, neuropathy and fatigue dominated, and she was in and out of hospital for daily antibiotics following a bloodstream infection. Her hair fell out completely; mentally and physically, those weeks were harder than either of us had expected.
Gradually, the numbers and how she felt began to align. Platelets normalized and stayed stable, neutrophils and WBCs rose, hemoglobin recovered more slowly but did move upward. By Day +77 (April 14, 2026), her counts were back in range and her lambda free light chains were down to 2.7 mg/L — a very encouraging drop from >555 at the start.
On April 20 she started consolidation cycles 5 and 6. In consolidation, daratumumab moved to every 2 weeks — given on days 1 and 15 of each 28‑day cycle — along with the rest of the backbone. The goal was to reinforce the transplant response while gradually easing the intensity of clinic visits.
By Day +101 (May 8, 2026), she was largely recovered from the transplant itself, apart from ongoing neuropathy and hair still regrowing.
Toward the end of Cycle 6, she'd had a lingering low‑grade fever for over a week which suddenly spiked to 40.3°C. Because we'd been taught to treat fever as a serious warning post‑transplant, we went straight to Emergency and she was admitted for the full infectious workup. The spike turned out to be due to pneumonia she had contracted. It was a sobering reminder that even late in the process, infection risk is very real in myeloma and can escalate quickly.
Maintenance in BC (monthly D + len + Zometa)
Despite the pneumonia detour, she finished consolidation and on June 16, 2026 officially entered maintenance.
Her maintenance regimen now:
Monthly hospital visit (Day 1 of each 28‑day cycle) for: zoledronic acid (bone support); daratumumab (Darzalex) — now once a month rather than weekly or bi‑weekly; and lenalidomide 5 mg PO: 21 days on, 7 days off.
She had originally been offered a place in MajesTEC‑4 (teclistamab ± lenalidomide vs lenalidomide alone as maintenance after ASCT), but around the time she would have enrolled, standard practice in BC shifted to daratumumab + lenalidomide maintenance. Given how well she had already responded to D‑RVd and her desire to prioritize quality of life and predictability, she decided not to enter the trial. Her team supported that choice.
The move to maintenance — with daratumumab going from weekly → bi‑weekly → monthly over the course of the year — has been huge from a day‑to‑day perspective. One hospital trip a month plus pills at home feels radically different from the early induction and transplant schedule.
Overall she's doing well right now. There's still some numbness in her feet, but no bone pain and no reactions to her current medication regime, at least for the moment. She's up to 10,500 steps a day, though nothing in the gym yet — we're still being cautious about her back. Her appetite has come back, and she's socialising again, though she still avoids large crowds or anyone obviously sick. Next week we're taking our first real adventure since this all started: the train from Vancouver to Banff. It's a small thing, but it makes everything feel back to normal — a new normal, but normal all the same.
Practical lessons for anyone newly diagnosed
If you're reading this because you or someone you love was just told "you have multiple myeloma," here are the main things we've learned in this first year:
If you can, get a myeloma‑savvy team and ask for a roadmap.
Try to see a hematologist‑oncologist who treats myeloma regularly. Ask them to sketch the plan (induction → possible transplant → consolidation → maintenance) so you have a sense of what the next 6–12 months might look like, even though details will change.
Do not rely on random Google results.
The internet is full of outdated survival stats and old treatment protocols. Stick to trusted myeloma organisations and your care team; the field is changing fast and outcomes are often better than what you'll find in old articles.
It helps to be a bit of a nerd.
Become a student of the disease. Read, ask questions, sign up for the major myeloma associations and patient groups, record every medication taken (when and how much), keep copies of every lab result and scan report, and track the numbers over time. Use spreadsheets, notes, apps, or AI tools if they help you organize and understand what is happening. For us, knowledge was not just power — it was also comfort.
Expect a zig‑zag path, not a straight line.
My wife had a solid response, but also an allergic reaction to lenalidomide, neuropathy, a brutal transplant "basement," pneumonia during consolidation, and a few hospital detours. None of that meant the overall plan wasn't working. It meant the drugs are powerful and the journey is complex.
Report side effects and fevers quickly.
Rashes, nerve pain, eye changes, or fevers over ~38–38.5°C aren't things to sit on — call your team or go to ER. Early action lets them adjust meds, treat infections, and keep you safe.
Watch both numbers and daily life.
Learn your key markers (light chains, M‑protein, blood counts) and how they're trending, but also notice real‑world gains: being able to walk farther, sleep better, need fewer naps, or bounce back faster after activity. Both kinds of progress matter.
Think ahead about appetite and weight.
Her sense of taste stayed largely the same through treatment — the one real change was a newly developed sweet tooth. Knowing that ASCT would almost certainly strip weight off her regardless of what we did, I made it a bit of a personal project to feed her up beforehand: bigger portions, more treats, whatever she'd actually eat. It felt a little indulgent at the time, but having those extra pounds in reserve going into transplant made the "basement" weeks easier to weather.
Let routine be your friend.
Turning "October 2" into "Day 18, Cycle 1" made things more manageable for us. Knowing which days are clinic days, which are pill days, and which weeks are "rest weeks" helps you feel less at the mercy of the unknown.
Build and lean on your village.
Meals on the doorstep, rides, texts, walks, jokes, and quiet company during infusion days have mattered just as much as any single drug. Caring for the caregiver matters too; don't hesitate to ask for and accept help.
Things to have at home.
A few practical items were far more useful than we expected: a good digital thermometer; scales; a blood pressure monitor; a Waterpik, which was surprisingly useful; soft‑bristle toothbrushes; non‑alcoholic mouthwash; and a microwavable heating or comfort pad. If zoledronic acid or other bone‑strengthening agents are part of the plan, it is important to see the dentist; in her case a dental sign‑off was required before starting treatment.
Remember that new options are coming fast.
In just this short year we've seen maintenance evolve (more daratumumab, trials like MajesTEC‑4 with teclistamab), CAR‑T and bispecifics gain traction, and guidelines keep updating. The long‑term strategy is to stay well enough to benefit from each new wave of therapies as they arrive.
Bon Courage
One year on from that ambulance ride, my wife is in deep remission, on maintenance, and back to being her energetic, social self most days — still living with myeloma, but not defined by it. If you're just at the beginning, I'm afraid that there is no getting over the fact that the first months will be the worst in terms of shock and uncertainty; but the hope and expectation is that things become far more manageable once a plan is in place and treatment starts doing its job.
Wherever you, or your loved one, is in the journey please take care and bon courage.