Yes, many of us on here have MM. No, most of us do not have MDs. I can say:

* If your test results are remotely close to the "normal" range (like, you can see them on the same page), it's unlikely you have MM.
* If you know you have health-related anxiety, then *that's* more likely to be your main health problem rather than you having this relatively rare blood cancer. This is especially true if you're young. Maybe there's a subreddit for that problem that you could frequent?
* Please have some empathy. Many people on here have this treatable but as yet incurable blood cancer. If your problems (like, say, test results you don't fully understand) are less severe than having a terminal cancer, maybe keep them to yourself rather than burdening folks with bigger things to worry about?

I feel great. Other than fatigue (which is not great but also not terrible), I am back to my normal self.

Had chemo, then stem cell treatment (which was awful but only for a couple of weeks) and now on Revlimid and a couple prophylactic drugs.

I have gone from expecting to live for ~5 years when diagnosed 2 years ago to hoping (nay, expecting) to live for decades.

So, if you're newly diagnosed, have hope. Things can be MUCH better than you fear.

Today we found out that my wife is in remission. The biopsy showed no myleoma cells and her Kappa/Lambda ratio is back to normal. Just waiting on some paraprotein numbers before the consultant will say it’s a full remission. This time last year she was in hospital recovering from septic shock a spell in ICU and being given the cancer diagnosis - what a difference a year has made. Now we can get on with our lives and hope for a long remission

I posted here about 8 months ago asking for any success stories with MM and kidney failure. My dad had less than 5% kidney function and a really bad prognosis. I really thought it was going to be goodbye…

BUT he actually doing GREAT. He responded well to his chemo and bone marrow transplant AND is off dialysis. I’m not sure what his kidney function is right now, but I it’s at least 50% and they are still healing. The treatment gets better and better each year. He went to Emory in Atlanta and they have been amazing. I lost hope and was thankfully proven wrong so, don’t be like me. I’m so thankful to be able to share this story because I couldn’t find many like it.

Hi,

I am in the middle of my ASCT at UCSF, I am on day +11 (14) and am waiting around for my WBCs to kick in. I was hoping it would uptick today, but I'm still waiting. I am bored and happy to answer any questions anyone might have for someone in the middle of it, although so many people have made excellent posts that I only have my version of it.

Background story:

Very fit 53 year old male. Santa Cruz, Ca. Diagnosed with MM, I had 50% cancer in the blood, but it was caught late and I had a LOT of bone activity. I actually fractured a rib doing Crossfit a month before a random annual blood test showed my M-Spike. I thought I just popped it out doing burpee pull ups…doh. They actually missed the M-Spike on a blood test I had 2 years prior, which even my oncologist said ‘oh..there it is, you have had it a while’’.

I feel like I have excellent doctor support and went on 4 months of RVd+Dara which I had such a quick and powerful response to that I was put into a study, however when I finished I was still at about 5% cancer in the blood (MRD was 1900, I think). I also received monthly Zometa infusions for bone repair. I had to keep working through my Induction therapy and had many rough days and nights, but I got through it. I think that was the hardest for me, just not being able to take time off.

I was very scared at first of ASCT as I read too much online and almost felt like maybe I could get to MRD negative using other means and wait for a better solution (CAR-T, whatever), but I also trusted my Myeloma doctors at home and at UCSF. I felt like, for me, doing as much as I could sooner would give me more runway later, time will tell.

I was admitted on a Sunday, and got my melphalan that evening. Interesting note, I chose to do a Penguin Cold Cap, it was an afterthought as the nurse was telling me about eating ice a week before my ASCT and I made a joke about putting my head in a bucket, which is when she told me about Cold Caps. Ironically my insurance will cover a 3K wig, but not a 2K Cold Cap service. It was a long night as the cold cap goes for 7 hours and I had a very nice guy who every 30 minutes would swap the cap. Being close to Halloween we watched a Harry Potter marathon and after the 2nd cap it wasn't even a problem cold wise, the ice chewing...kinda sucked. The next day was a rest day, so I just slept. The Cold Cap for me was less about personal vanity and more about getting back to work/zoom and not having my hair 'change'. I just didn't want to look like a cancer victim when on zoom calls with investors, clients and other things I need to do. I will let y'all know how it works, so far no shedding, but it's early, either way an interesting experiment.

I got my transplant on Halloween and it was really easy, it just goes in and there is nothing to it.That evening like 15 nurses came to my door and sang Happy Birthday to me and gave me a birthday cupcake (as many like to consider that your new birthday). It was so sweet and made my day.

I walked the halls daily, drank lots of water and did 100 pushups a day till my numbers crashed and I got too tired. No idea if this helped me, but I figured keep punching till you can't and then punch a little more. I now lazily ride a stationary bike they have and am pretty lucky as the ocean/city views are amazing in the exercise room. This tires me out quickly though.

Side effects for me have been mostly diarrhea (everyone gets this), nausea and no appetite. Others before me said it best, don't wait on the nausea, take whatever they got even if it kinda goes away. My nausea stopped on day +6 but I am still taking the meds. I have had no mouth sores, but I ate 2 buckets of ice like it was an olympic event. I did learn that it is less about eating ice and more about packing your cheeks, I actually bit my cheek and got the nurses excited as I had a small rip (but this actually healed fine). So far I have lost 10/12 lbs, but I don't seem to be losing more and I am able to eat fine, I just am not very hungry.

I have to be honest, this has not been what I thought it would be. I respectfully and with empathy know others suffer a lot through this. I was really scared of this and it has just not materialized into what I expected. I have had a few bad nights, I mean sleeping in a hospital is hard anyhow, but a few nights were rough, but mostly it's hard waiting and I am tired of the food (although my wife is able to bring me Trader Joe's frozen food!) and being in a hospital for weeks sucks, but I am blessed with so many great nurses (these people are my heros).

The doctor told me that this is the worst I should feel as I will feel better when the numbers pop. I am tired, but it's really pretty manageable.

I am happy to share more or answer any questions about my experience. I probably forgot some things, but I'm just killing time in my hospital room !

UPDATE: I was released on 11/14/23. Sorry I got home and was just so tired I think I slept for 2 days. But wow talk about appreciating fresh air and my own bed...a miracle.

Total count was 17 days in the hospital and I lost about 20lbs (tho my wife thinks I look good hehe.

Hello everyone.

I’m new to the sub. I Thought I’d get to know the community a bit with an easy opener:

How old were you when diagnosed and how long have you been in the fight?

I was 30. I’m 38 now. Found it due to severe back pain. Collapsed vertebrae.

All sorts of other details I could give (like everyone else here), but generally I’m okay. I’m always in treatment. Have had very little remission - more just assisted suppression.

I Still work full time despite a lot of pain. But as my favourite phrase goes, it could be worse. I’ve seen plenty of people in worse shape.

So I’m grateful :)

Would love to hear from everyone about how long you’ve been in the fight (without being too too long a novel).

13 years since MM diagnosis and have had AutoSCT and three other lines of relapsed therapy.
On REGN5458 since April of 22, culminating in a MRD-Negative result for a year. Small jump in m-spike led to PET/CT which surprisingly revealed some very serious plasmcytomas including one on my spine with suspected nerve root impingement. Within a week the suspicion was confirmed when I became immobile and unable to walk or recline due to radiculopathy down my legs.
I was devastated having been so encouraged by the MRD/- result from the blood and urine results. Immediately started a step up dosing on Talquetamab this week, following completion of accelerated radiation on the cytoma. Posting this on hopefully my last night of in patient observation for CRS and ICANS, followed by injections every two weeks. Back to cautious optimism!

The REGN BiTE gave me 17 months of good reduction of m-spike, but as I’ve read, it can’t tell the whole story, or in my case, show the whole picture. Hoping this info is helpful to anyone experiencing similar circumstances to not rely ( medically or emotionally!) on blood and urine results when things look good.

Going to follow through with Talquetamab ( an FDA approved BiTE that latches onto a different myeloma surface antigen) and count on the best. My docs are great and will incorporate this experience on cases with continuing REGN5458 participants.

Keeping the faith and determined to work the treatment and maintain a decent quality of life for myself and my family. Also anyone reading this who is eligible, please see if you can Be the Match for autologous stem cell donations

https://bethematch.org/

First post on here. My mom (61F) got diagnosed in September with mm after she was hospitalized due to a fall. The oncologist said if they did stage it - it would be stage 3. She has multiple spinal compression fractures and after being in and out of the hospital physical therapy says that they can’t really do much. They recommended the family work the bed exercises with her. She’s has had 3 rounds of chemo (velcade) and targeted radiation therapy on her spine. Right now she has excruciating back pain and screams when she tries to stand. On her best days at the hospital she’s able to stand for about 3 seconds with support. The doctors said she is not a good candidate for the Vertebroplasty.

Are there other options? Will she always be bed bound?

I would love for someone to explain this disease to me. I also have hemochromatosis. How can I be anemic and have to blood let to reduce my iron count. My next appt is Dec 1st..but I have alot of questions. I have rib pain, spine pain and now my leg in the hip area is hurting, is this normal. I just turned 63.
Thanks for any help and I will welcome PMs.

My mother has recently been diagnosed with MM. I'm here trying to look for some answers to be better prepared to deal with what's to come. So she has active MM meeting the CRAB list. Her Lambda light chains are high at 289. and her B2 Microglobulin is at 5.6. From what I have been reading and also what the Onco has said this is a stage 3. We will begin VRD in the coming week. She was diagnosed about 1 month back. I want to know if this is a disease that will progress rapidly. I am seeing a deterioration in the last two weeks. She is wobbly on her feet and needs a stick to walk about now. This has scared me because even 20 days ago she was absolutely fine. She was relatively active and had no issues walking. She says that she has a tingly feeling in her thighs and feels like they won't hold her up. Is this just how it goes? Also, will the VRD make this better for her?