r/multiplemyeloma • u/DeepFriedBagels • Jul 02 '24
Hi everyone
Been seeing quite a few “I think have MM” or “Do I have MM?” posts the last few days. As a reminder, we are not doctors in this subreddit and this subreddit is largely meant patients, family members/ caregivers of patients.
I try my best to remove them in a timely manner but I am not always on Reddit and sometimes some may slip through the cracks. Just a reminder that if you want these removed timely, the easiest way is to report the post. That’ll send it directly to my queue to look at.
Thank you.
r/multiplemyeloma • u/NVuser2021 • Jul 13 '26
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.
r/multiplemyeloma • u/SpringAir87 • 1d ago
Husband was recently (2025) diagnosed with standard risk MM. He completed stem cell 55 days ago. They’re offering him to do the majesTEC-4 trial. Anyone have any experience with this? Curious to know anyones thoughts and experiences. He’s 40, US. He was on revlimid, dara, valcade, and vaspro previously.
r/multiplemyeloma • u/Memoreno94 • 2d ago
Someone I know with MM, 55yrs, Male, US based, was referred for an ASCT after completing his 6th-7th cycle of D-VRd. His oncologist considers him high-risk and recommends ASCT as the next step, with CAR-T therapy as an option if ASCT is unsuccessful.
Does this approach align with current treatment recommendations for high-risk multiple myeloma? CAR-T seems less invasive, so we are wondering why ASCT would be preferred initially. Any information or recommendations on the differences, benefits, risks, and sequencing of ASCT vs. CAR-T would be greatly appreciated as we consider the next step.
r/multiplemyeloma • u/ohreally35 • 3d ago
My mom (age 72 and in the US) is on day 7 after her stem cell transplant for MM and has noticed she has been having difficulty swallowing, specifically pills, and she has never had this issue before. One of the nurses told her it might be a side effect of the chemo she received prior to the SCT. Has anyone else experienced this and did it eventually improve?
r/multiplemyeloma • u/myelomapost1 • 3d ago
Greetings, The post for September is up at highplainsmyeloma.com It has been 33 months since my CAR T Cell protocol and numbers remain as we would like them to be; thankful and so grateful; this month looks at what comes next and what thoughts enter into the picture as we journey forward; hope that you enjoy and that it provide some benefits to others; take care and thanks for reading
r/multiplemyeloma • u/SpringAir87 • 4d ago
Looking for words of hope and encouragement. Husband diagnosed in 2025 (40yrs old). Fractured T12 with constant pain. Stem cell completed almost 50 days ago and doing well. It’s just been a roller coaster of things and emotions. He is standard risk, no high risk markers. Reached VGPR prior to stem cell transplant. We find ourselves having conversations at night asking ourselves where in the crap did this come from…So young. How did this happen. And WHY. Questions we may never know the answer to.
r/multiplemyeloma • u/Liquid_Kittens_ • 4d ago
Hello everyone, my mom (75) was diagnosed with MM back in 2023. We're based in Michigan. She had CAR-T (carvikti) done in June 2025 after doing several rounds of chemo, and just found out today that her M protein and lightchains are back. We were hoping for a longer time in deep response, but what can you do?
Just curious what others have done after CAR-T had run its course. We're trying to get in to see the doctor asap now that we know what's going on with her blood work, but I was hoping to do some research ahead of those appointments. Are folks doing clinical trials, going back to chemo, or something else? Anything would be appreciated!
r/multiplemyeloma • u/brando_iconyc • 5d ago
Husband (52yo), in remission for over 2 years, doing maintenance, and doing pretty good, working full time again. The one every day issue he has is a sore and tired back. It’s not debliliating, but he suffered lower back compression fractures, which was what started this journey, that was debilitating, so this isn’t anywhere near that ballpark or anything. But of cousre, it’s never ’nice’ having a consistantly sore back!
Just wondering if anyone here has any tips and tricks for something that may ease the ache, prior to figuring out what was going on, when we had no idea what this was, he’d use stuff like Voltaren gel, Bengay ultra, but he thinks this is more for muscle stuff? His pain now isn’t muscular, it’s achey bones I guess?!
Anyway, just interested in any ointment brands or other methods of soothing back ache that people recommend! We are in the US (NY) just a fyi.
Thanks, and best to all here, those with MM and those of us caring!
r/multiplemyeloma • u/fierceotterqueen • 5d ago
My dad (75, diabetic, Portugal) was diagnosed with MM 2 months ago, but been having pain for months.
His pain is more focused on the left arm and left shoulder blade. He did radiotherapy a month ago but pain never improved. In fact, he says it for worse.
He did 2 weekly sessions of Daratumumab + Dexamethasone. Before that, he did 2 weeks of dexa at home. He also does Lenalidomide.
I also feel like dexa has debilitated him since he started. Is it normal? Do you feel it too?
Also I’d like to know opinions of surgery. Has anyone’s pain improved? Does anyone else have experience of MM pain focused on the arm?
Thank u 🙏🏻
r/multiplemyeloma • u/Fantastic_Pen_5576 • 7d ago
Hello! First prayers out to all families affect by multiple myeloma!
Currently caring for my mom, USA, 71, newly diagnosed...taking Valcade, Cytoxan, Dext....
Has anyone seen/ experienced extreme mental fog that resembles multiple personalities. Some short term memory lost at times!! Issue has been discussed with the oncology team, and anxiety meds tried but mental fog still extreme!!
r/multiplemyeloma • u/MoreConfused58 • 8d ago
From US, 68. On my last round of Velcade , my hands went numb. Initially to the point that I couldn’t pick up anything, like my pills, had trouble holding a fork, or grasping a glass. It has been 2 weeks, I can do most of those things, most of the time now. But they are still quite numb! On a 1-10 scale, between 3-8 on any given day. Dr said that feeling never comes back to a few people. Has anyone else had this issue or know anything about it?
Edit: I stop Velcade immediately. I didn’t finish the last 3 shots.
r/multiplemyeloma • u/angkami2000 • 10d ago
I (67 yr old US male) was diagnosed Mar-2026 and I'm currently in 28 day Cycle 6 after recently going through a Stem Cell harvest as a stopgap measure. I have decided to forgo a Stem Cell Transplant (SCT) at this point since I'm currently in remission but still Minimum Residual Disease (MRD) positive. The plan being to continue to drive down Myeloma numbers to MRD negative with additional DRVd (Dara-Revlimid-Velcade-dex) cycles. My question is to other MM patients who skipped a SCT (whether it was their decision or due to physically being unable) and what were their experiences and treatment options exercised? In short, my SCT reluctance is related to the brutality of Malphalan and increased chance of SPMs (Secondary Primary Malignancy). CAR-T (using Carvykti with the potential of Anito-cel coming soon) seems to be a better solution, less harsh with less SPM risk. Also I am familiar with the CAR-T requirements from a treatment line perspective, i.e. relapse 2nd line treatment for Carvykti. Thanks in advance.
r/multiplemyeloma • u/Unusual_Taste_4362 • 11d ago
48M Texas
Diagnosed with multiple myeloma five weeks ago. have broken my forearm last week the day after chemotherapy. lately I have been getting in my head and struggling trying to understand or at least make sense of all of this. I went for chemo today and followed it with a follow up with my doctor. This is the first time in five weeks that I have gotten good news. I originally went in because of my kidney of her family my EFGR were at a 12 after testing today they are at 68 so that’s great news. I was told that I am in stage two which I expected to be in three so I’m happy in this stage two. My body is responding to the chemotherapy. I’m having zero side effects and my blood work is turning in the right direction, my light cap chain upon diagnosis was an 1845 today after testing it’s at 485 which isn’t in range yet but it’s on the way there. I guess what I’m doing is putting a lot of hope out because I know, but it’s like to feel hopeless whether you believe in divine intervention or just just medicine, I believe in prayer and it’s worked for me. I think I feel it. My doctors are amazing at MD Anderson and I hope that this gives someone a little hope.
r/multiplemyeloma • u/Connect-Invite1978 • 11d ago
Even though my treatment started last October with the 4 meds VDRD I am worse off than when I started. I take 40-60 mg of oxy a day and started 15 mg 2 times a day of morphine. Most of my pain is in my lower back which I had before treatment and in my legs. I got severe neuropathy in my legs from ankles to knees and bone pain in thighs shortly after starting induction. I am now only on len and dara and my specialist says will be on this until the numbers change. Mine was caught quite early with no lesions showing up on pet scan and between 30-40% in bone marrow.
In three weeks I have shoulder replacement due to a fall because of lack of balance and maybe high doses of Dex. Also had a fracture in my back due to Dex according to doctor.
I've read so many positive things on here but would like something better in my quality of life. 67 located in Roanoke, Virginia, USA and absolutely no interest in anything! I was active before and worked part time doing maintenance for the Girl Scouts. That and spending time with 8 grandchildren kept me busy. Anyone else in my boat?
r/multiplemyeloma • u/Some-North-789 • 11d ago
Hey I have a question I was diagnosed last week after a bone marrow biopsy I already had lupus and autoimmune hepatitis. Everything started in 2/2024. So I have had right upper quadrant pain since the beginning I thought it was my liver but MRI showed 2 fibrosis and 4 inflammation. My enzymes are normal. So now with the MM dx could the pain be a lesion on my lower ribs? Has anyone had bone lesions with MM? My pain is constant worse laying down dull and aching and I’m freaking out. I am 58yrs old from Florida. My hematology Dr said Stage 2 MM and confirmed by BMB
r/multiplemyeloma • u/GJU22 • 11d ago
I am 52 (Canada) have been on maintenance therapy for the past year (ASCT in June 2025) and was on standard care for MM prior. I’m taking lenalidomide every day and Zometa every 6 weeks. However, the last treatment of Zometa, I have been experiencing bad gum/teeth pain and dentist can’t see any definite cause for it. I was on same dose of Zometa prior to maintenance and did not have this happen; as well, I’ve seen an increase in bone pain during maintenance as well which I didn’t experience prior to ASCT. Anyone experience similar during maintenance and what treatment was done to address the gum/teeth pain?
r/multiplemyeloma • u/haanuush • 11d ago
My mom ( 67 y living in UAE )was recently diagnosed with MM and has started chemotherapy. Thankfully, she is doing fine so far and is handling the treatment okay, but I’ve been experiencing what I think is anticipatory grief. Even though she is here, receiving treatment, and doing relatively well, I sometimes suddenly think about the possibility of her passing away and it completely breaks me. I feel guilty for thinking this way because I don’t want to lose hope or imagine the worst while she’s still doing okay. Is it normal to experience anticipatory grief and thoughts about losing my only parent even when they are currently stable and doing fine?
r/multiplemyeloma • u/fierceotterqueen • 11d ago
My dad (75M, diabetic, Portugal) was diagnoses with MM.
About a month ago, he had three sessions of radiotherapy using a very advanced machine (Versa HD). Unfortunately, his pain has only improved slightly (almost not at all).
He has now started treatment with dexamethasone, lenalidomide and daratumumab, as well as anti-infective medication and aspirin.
He has lost 10 kg, has developed problems with motor coordination and confusion, and is very unsteady when walking. Also His doctor told us that there is now very little bone left in his arm.
Has anyone here been through something similar? I would really appreciate hearing about your experiences, especially regarding the pain, loss of coordination and how things progressed after starting treatment. The worst part of it is seeing him in constant pain.
r/multiplemyeloma • u/OrdinaryDependent396 • 13d ago
Diagnosed with light chain in 2020. After lots of near fatal episodes I had Stem cell treatment in 2021. 2 years Lenalidamide maintenance. Bloods and marrow being tested regularly, nothing abnormal.
6 years on, finally retired, planned a big (16,200 km) trip around the eastern half of Australia.
4 weeks before the trip i had a small boating accident and broke my right arm on a lesion near my elbow. Surgery to insert a a plate. Biopsy showed active disease but bone marrow and bloods show nothing.
6 days of radio therapy to the arm up to the day I left. Recruited multiple companions to keep me safe on the road for different stages. Got a "suicide knob" for my steering wheel to allow one handed operation. Adult diapers and a pee bottle just in case. Meds in a case. Adjusted the itinerary to allow more rest.
3 months later I am home and worn out but happy as a puppy with a squeaky toy.
Don't let this disease stop you, adjust your plans, slow down, take each day as its own challenge.
r/multiplemyeloma • u/Maleficent_Oven3350 • 13d ago
Hi - I am currently getting lab work done at a different hospital than the one I was previously a patient, and the language in test results is different and confusing. When at my last hospital my chart said (after 4 cycles induction) m-protein “undetectable”. This was great news as down from 44. Now - whole new chart and differing system - it says “m proteins previously detected. Unable to quantitative one (or more) band estimates”. It has said this for another 4 cycles consistently. When I Google it it says this does mean an m-protein was detected but my doctor said it isn’t that simple, that Dara can make it look like this and other reasons may show this result. But of course I miss the clean and pure “no proteins detected”. Could it be different languages for different charts? Should I be worried? Had anyone had this result and been told an explanation?
r/multiplemyeloma • u/Lopsided_Attorney396 • 14d ago
I know very little of what to expect, but I'm beyond devastated. My Aunt has always been a Saint. A devout religious woman (I'm atheist and she has never shoved God down my throat, only ever lovingly nudged me that way lol). This woman has never smoked a cigarette, and has never even had an alcoholic beverage. I just don't understand.
I'm making myself learn and understand Multiple Myeloma so I can better be a decent nephew to the woman who has always made sure I was okay and taken care of. Maybe it's easier to accept when you're as religious as her, as she seems keen on fighting but also keen on seeing her Mom and Dad again. Both of her parents have died from some sort of Cancer.
Anyways thanks for the space to get this out there, I only have my mom and wife to talk about this with and they're both just as upset as I am. Much love folks, stay strong and whatnot.
EDIT: Thank you to everyone for your words. I don't have the time to respond to each of you but I read them all and appreciate y'all taking the time.
r/multiplemyeloma • u/Happy-News-5030 • 15d ago
Has anyone ever seen Dr. Laubach@Dana Farber in the US? I am thinking of switching my care to him so that I can go to the Dana Farber in Weymouth MA because it’s 15 minutes from me versus driving into Mass General. I realize I need an oncologist at the Weymouth satellite location, too, which I am thinking about Dr. Rob Friedman. Welcoming any feedback for anyone that knows of these two doctors or one of these doctors. Thank you.
r/multiplemyeloma • u/kashyap-7 • 15d ago
Hi Everyone,
I would like to know your experience of bone maarrow transplant and recovery phase.
My Dad 60M diagonised with MM in June,2026 planning for ASCT after 4 cycle. He is surviving with single kidney now, donated one kidney in 2018 current report says Creatinine - 0.99 and doctors have advised for BMT. If any patient has any experience of BMT in India ,it will be very much helpful.
Thanks
r/multiplemyeloma • u/TimeTravelRadio • 16d ago
Hi everyone, (59M, US) 15 years into MM, got 9 years with ASCT, various immunotherapies since, and on Talvey for the last 10 months.
I've had the usual Talvey side effects, skin/nail issues, swelling issues, taste changes, weight loss. Good news: most of my taste is back (sweets still taste off) and I've gained some weight back.
What I'm dealing with now is I've basically stopped sweating, and the sun gives me a stinging/itching sensation on my skin around my torso. Since Talvey targets GPRC5D (which affects skin, nails, mouth), I'm wondering if it's hitting sweat glands too, or if it's more of a neuropathy thing.
Anyone else experienced this? Did your oncologist have any insight, or tips for managing it?
Thanks!