r/multiplemyeloma

Cycle 5 of Induction treatment- DVR-d, age 57, female, US
My treatment has gone well so far, a few side effects, mostly manageable, cancer markers are going down consistently. Some of the eye problems, like styes and swollen eyelids are uncomfortable but not dangerous to vision, as I understand.
But in the last week or so I have had lots of trouble with my vision, unable to read things on the computer. I wear glasses, progressives now, but have worn glasses since I was a child.
I was very concerned that I had a new issue, maybe a cataract forming or a pressure issue or something else so I walked into my local optometrist office. I saw her just before I started treatment in February.
Shockingly, my distance vision has improved dramatically- like a whole point in each eye. Everything else about my eyes (ignoring the styes) is healthy and the same as it has been for the past 4 years).
The doctor concludes that it is most likely my treatment but cannot explain it. She also suggests it may change again as I go through and meds change.
I’m reluctant to get new glasses but I need them to see.
Has anyone else experienced this or anything like it?

Last year on Independence Day in the US, I was in the hospital. Family and I were preparing for me to punch out. MM on the rampage. One of the drugs being used in my particular cocktail cause a heart attack. Sure seemed like time to leave this mortal existence.

This year on Independence Day I’m home and healthy as I’ve been in two years. My MM is in what my oncologist describes as a “miraculous remission” - no signs of MM in either blood tests or bone marrow biopsies. Heart has been solid for a year. So this Independence Day has special personal meaning for me. Spent the day baking bread. Will watch fireworks later tonight. I’m grateful to still be here.

I’m sharing this story in the hopes it might help somebody else who is hitting rock bottom right now. Keep hope in your heart and keep fighting.

Hi everyone.

My mother is scheduled for her stem cell transplant in the fall, if her rounds of treatment go well. She will be staying with me as I have a separate living quarters she can be in for recovery.

What are some things I can do to prepare for her stay and recovery? I have looked through previous posts and have seen a bidet, a shower chair, and prepping some broths to freeze for her.

Our family plans on getting our flu shots before her stay as well.

Thank you all for your help. This subreddit has already been helpful for my mother and myself since her diagnosis.

Hiya - after some experience or insight from this community please! (Uk)

My husband (aged 50) has just been diagnosed with MM after a fall caused unbearable and uncontrollable pain in the spine.

After multiple trips to A&E getting fobbed off, an MRI revealed multiple tumours (one of which is 7 x 7cm) on the spine one of which is compressing the cauda equina which was causing groin numbness.

Biopsy confirms MM.

We are waiting results from PET and Bone Marrow biopsy before prognosis and treatment plan.

Doea anyone have experience with similar? None of the information I have researched mentions actual tumours....

Thank you.

My 55 yr old dad just recently started his induction treatment. He’s on week 2 and it’s absolutely kicking his ass. He’s so tired, like the type of exhaustion he can’t fight through. He’s sensitive to smells and nauseous over everything. Worst of all, his body is just in so much pain. It’s heartbreaking to see him like this. I know it’s typical for induction to be difficult but does it get better? I’m scared seeing him like this. He’s typically very stoic about everything but this is something he can’t be stoic about. Any words of encouragement? Anything I can do to help him? I feel terrible just watching him suffer

Hi everyone. I’m from India and was wondering if anyone here is from India or knows someone who has gone through this disease here.

like which hospital are you being treated at, and which city are you in?

I see a lot of posts from people in the US, UK, and Europe, so I was hoping to connect with others in India.

As my wife gets ready to start her treatment, we are trying to understand how life will look while immunocompromised. We bought masks, Purell, air purifier....I even bought Oura Rings for both of us cause apparently it has the ability to spot an upcoming cold/fever a few days before symptoms.

So obviously wearing mask in crowded public spaces etc, but how do you guys deal with family? Grandkids etc....spend time with them only outside? Always mask if inside?

Was wondering after induction - what would a maintenance plan possibly be for High Risk ? I know we have to continue treatment, either bi-weekly or monthly- would that be IV or shots ? Or both ? Rev alone? Just seeing what others are doing..
Also - does it get just routine with all the trips?

Thanks !

She was diagnosed in November and she hates doctors and doesn't trust big hospitals. She is currently in the hospital for low O2 and on oxygen. She seems like she has masses in her chest (not the bone liesions) and I'm wondering if anyone else has experienced this and what we can expect? The doctors keep running more and more tests with no clear plan yet and I'm reeling

Hello All! My brother has just completed cycle 3 of his induction phase. His M-protein count dropped tremendously from no treatment to cycle 1, but has leveled off since then. Question, has anyone seem their M-protein count plateau on a cycle and then decrease on subsequent cycles? Or once it plateaus has it stayed that way absent changes in the regimen? Thank you for any info or insight!

M45 had some results back from an MRI today that were a bit unsettling. I knew I had a fractured L5 but it turns out I’ve got a fractured L2 too. I’ve also got lesions in the ribs, sacrum, collarbone and a significant lesion of 10cm in my hip socket. Oddly I don’t have too much pain and I’m still cycling and walking but I’m wondering if anyone had similar diagnosis and if the treatments improved bone health? I’m on DVTD and Zoledronic acid at the moment.

Diagnosed Nov 2024. SCT May 2025. On lenalidomide (aka Revlimid) maintenance since Nov 2025. 56F. In Canada.

I have an Apple Watch that alerts me when my heart rate is 45 bpm or lower for 10 minutes.

Today, I've had four alerts already (43, 42, 43 and 44 bpm), and I've only been awake for a few hours. Every month over the past six months or so, I've had an increased number of alerts.

I've spoken with my GP and my oncologist but neither seem particularly concerned or interested.

I'm curious if anyone here also has a low heart rate and feels like it might be related to MM or treatment?

Anyone else having cramps? I’ve been getting occasional painful cramps in my lower legs (mostly left leg) overnight.

This evening I’ve started having forearm cramps which seem to be moving into my elbows and upper arms. This may have been brought on by reorganizing my workshop today. Lots of lifting, carrying, and putting stuff on high shelves.

M69. USA. Diagnosed 2017.

My current regimen is Daratumab, Pomalidomide. And Dexamethasone.

I’m also on Flomax, Finasteride, and Cialis for bladder and prostate.

Hi!

Been diagnosed with SMM dec2024. High Risk SMM. Started dara/darzalex faspro 6 months ago. Now it stopped working - igg numbers slightly went up again... i am very sad...

Do you have any Tips to improve the effect of daratumumab?

I drink a lot of green tea - is this a problem?

Thank you very much!

I am looking for an expert to care for an 87 year old man who was tentatively diagnosed with mmm.
Any personal experience with someone affiliated with a major hospital in Manhattan? Thank you so much.

Talking to my oncologist once I was done with my first round of chemo. I was asking if there was some sort of picture we could get of whether or not there was any change or shrinking of lesions, etc. and if another scan would be done perhaps after the next round.

She said "No, we don't do any scans or MRIs until the very end of the 5th round of chemo. We do blood draws only to check the progress. That's it."

Is that normal? It seems like I remember reading somewhere that in the more high-end places (Sloan-Kettering, Mayo, etc) that they get an MRI halfway through chemo treatments. I'm wondering if those patients paid out of pocket for them.

What has your experience been with this? Did you get any mid-chemo MRIs or PETscans to check progress?

I posted in here a couple weeks ago freaking out, even though I hadn’t been diagnosed yet. Looks like I can join the party now. I’m in Tulsa, Oklahoma and the hematologist I’m seeing does specialize in multiple myeloma. They’re part of the OU Stevenson Cancer Center. I keep reading that nobody’s diagnosis is the same. It’s not a one size of it’s all etc. But it appears induction therapy is somewhat standard? Below are the meds I’ll be starting. I believe two of them are injections.
He did not discuss any type of risk level or stage. I didn’t even think about that until I was back from the doctor that in here it seems like everybody seems to know their risk and stage. All I know is that 25% of my plasma cells are myeloma with the kappa chains. I’m still shock honestly. I I had convinced myself that the spinal fracture was because of a fall. Not the case. I am fortunate that none of my organs are infected yet but I have sustained a fracture because of it.

1. Anti-CD38 Monoclonal Antibody: Most commonly Daratumumab (Darzalex) or Isatuximab (Sarclisa). These targeted drugs mark the myeloma cells so your immune system can destroy them. ® Binaytara +2
2. Proteasome Inhibitor: Most commonly
   Bortezomib (Velcade) or Carfilzomib (Kyprolis).
   They prevent cancer cells from breaking down their internal waste, causing them to self-destruct.
   9 Binaytara +2
3. Immunomodulatory Drug (IMiD): Most commonly Lenalidomide (Revlimid). This oral medication boosts your immune cells to fight the cancer.
   * Binaytara +2
4. Corticosteroid: Dexamethasone. This reduces overall inflammation and increases the effectiveness of the anti-myeloma medications.

Hey just curious on your guys thoughts between these to treatments. Pro/cons of each and if u had either how were the results im just trying to weigh my options if I have to go one of these routes . Im currently still on induction therapy im just thinking ahead..

Hello,

I’m 31F and have Igg monoclonal free kappa light chain in urine only. Previously 3 years ago it showed in my blood test, then was negative for 3 years until now it shows in my urine only. Everything else is normal levels, besides persistent elevation of crp and esr for the last 6 months with an unknown source.

My hematologist just said to repeat bloodwork in 6 months, however after reading on here I found a MM specialist. That specialist has reviewed my records and ordered a skeletal survey along with 24hr urine and more bloodwork before I even see her for the appointment. Is this standard practice? A bit overboard? Wondering why my last hematologist barely did much on it and this one sent me for a full body xray.

Just got the news today. Bone marrow biopsy and 24 hour urine tests show no sign of the disease.

I’m 66, male, and treated at The James at The Ohio State University.

I’ve been in a clinical trial for over two years after STC. Monthly Dara injections, IvIG, and daily Revlimid. No more Revlimid or Dara!

I’m ringing the bell today!