I got diagnosed back in May 2021. Cancer was basically the last thing I could think of as a risk factor in my life, especially with Covid happening, vaccines finally going out, and the general state of the world. I was only 29 and shelter in place was finally ending. “Normal” looked to be so close on the horizon.

My cytogenetics weren’t great to begin with. I started on Dara-Revlimid-kyprolis-dex at Stanford, with the plan to do a tandom auto SCT in October. I ended up doing some light radiation on my arm since there was still a lesion that was big enough to be a problem.

My housemate has been my caretaker throughout this whole mess. He’s a beautiful person. He helped me so much with everything.

The long couple of months after the SCT weren’t too bad for me. Being stuck mostly inside and not having freedom to eat outside food was tricky but we made it work.

Unfortunately, the SCT failed at around the 2 month mark and I relapse hard. I ended up with a lot of peripheral nerve damage in my jaw that never healed and intense amounts of sciatic nerve pain that took a while to go away even with treatment. We gave the previous regimen a try but the myeloma had mutated enough that it was no longer sufficient to keep things at bay.

We started periodic rounds of some pretty gnarly chemo options. Old school chemo. The heavy stuff. Cyclophosphamide, something with platinum, doxyrubicide, etc. I forget the exact setup but it was pretty hard stuff. The goal was to keep me going until we could start CAR-T, which was just getting GFA approved.

I work in tech and don’t really care too much for being stuck in the hospital. I talked with my manager and worked out an arrangement where I could bang out some code from the hospital to keep my brain occupied as much possible while all the good poison was being delivered. I attribute my remaining sanity to that and their understanding. They have been really good to me throughout all of this. I think most people probably don’t want to be working while going through this sort of thing but I take a lot of pride in my work and I found it helped, even if some days were more tiring than others.

After dealing with the initial acute symptoms, in ~February of 2022 I started down the path towards CAR-T. There was a single FDA approved option at that point in time and another one on the horizon. My team at Stanford made their best effort to get me whichever one would be available and manufactured as soon as possible. That ended up being the carvykti product.

Manufacturing delays ended up pushing that back to August. I was handling the heavy medieval chemotherapy pretty well up to that point but PET scans had shown there were now solid tumors in addition to just the lesions.

The CAR-T worked wonders. I had a complete response, nothing was found in my bone marrow or blood, and the masses had started shrinking. In October things were looking really good.

Once I was cleared I did a couple camping trips with my housemate and we started planning aggressively to do some travel throughout Europe, Iceland, meeting friends I hadn’t seen since before COVID in the US, etc for 2023. I started kicking ass at my job again. I was going to start living my life without anything holding me back from doing the things I wanted to do for as long as I could.

Well, the universe sure does work in mysterious ways. I want in for a PET scan on 10/31 and that one came back clean. The masses were still there but continued to shrink and we’re not showing any metabolism.
Bone marrow biopsy continued to show nothing.

I started noticing pain in my lower back during the Thanksgiving holiday while family was over. I didn’t think much of it; I’d had my first Covid jab and we were moving a bunch of stuff around the house to get it ready. I figured I was just sore until that pain started getting more and more unbearable. I had some leftover Norco from my earlier sciatic nerve pain incidents and had to break into that just to get some sleep.

I checked in with my medical team on 11/29 and we started doing some labs. My creatinine and other related numbers were a mess. My urine output started to go down. Up to this point my kidneys had been total troopers throughout the brutal rounds of chemo. Now they were starting to fail.

A PET scan and ultrasound revealed the worst possible news. I had a football sized mass that had emerged from the inactive masses and wrapped itself entirely around my right kidney and started going for the left. Prior to this I had noticed a bit of extra belly swelling but didn’t think much of it due to eating over the holidays and such.

There really isn’t much you can do with a solid plasma mass that large. The CAR-T wasn’t working. None of the clinical trials or chemo options from before would work with my kidneys being what they are. My team offered a drug that just got FDA approved as a Hail Mary - Teclistomab. A biopsy of the mass showed it still responded to BCMA so we went ahead and gave that a try.

I spent most of December in the hospital. This stay was rather traumatic for various reasons. In addition to the relapse, I somehow managed to catch Covid and was treated for that just prior to starting the teclistomab. My symptoms were pretty mild so I was able to get that through pretty quickly with all of the various medication options they had.

Unfortunately, I was stuck in an isolation room my entire stay in the hospital. Being stuck in a tiny room for a month was miserable. I wasn’t allowed to walk through the ward which sapped my strength immensely. The hospital bed began to exacerbate the pains in my back. I didn’t have any issues with claustrophobia in the CT or PET scan machine prior to this visit but they had to sedate me a bit to get a usable scan because I was panicking.

My mental health started to decline. They wouldn’t let me go until they had outpatient dialysis lined up and all of the various providers out here in the Bay Area suck. They would say they had availability and then renege a couple hours or a day later.

I was finally let out with a dialysis schedule and the hope that maybe, the teclistamab would do something to help with the solid tumors. I read up a bit online and knew the odds there weren’t great, but I kept up with my meds, soldiered on and tried to spend as much time as possible with local friends where possible. My mobility continued to be hinder and my fatigue didn’t really improve, but we made the appointments work.

I got a call from my nurse coordinator on short notice where they asked me to come in last Wednesday. My latest CT scan from an ER visit showed that the mass was growing. My lab work showed that my free kappa light chains were at 98. My sodium, potassium, calcium, etc looked decent but my kidney function was not improving. Unfortunately, things were not working. I’m out of options. There isn’t anything that can be done at this point. I have somewhere between days and weeks to go.

Right now I’ve gotten all of my close friends and family together to be with me when it happens. I’m riding the dialysis train as long as I can to keep myself alive so I can spend time with people. My legs are hurting but the pain killers are keeping that mostly at bay. My muscles are wasting away a bit because my appetite is very surprised and Nepro can only take you so far.

We’re going to try to do as many trips and things as we can together, within the limits of what I’m physically capable of. I’ve had a lot of time to process this and I think I’m doing about as ok as anyone in this situation could be doing. All of my legal/will type stuff is dealt with and ready to go at this point.

My family and friends have been an immense source of light during this dark time. Everyone is struggling in their own ways but we’re processing it together and have each other for one on ones.

The hospice team thinks that things will happen pretty quickly once they can no longer do dialysis. Obviously they can’t say for sure but most of what they see for people in this situation is that they fall asleep once the toxins build up enough and just fail to wake up. I suppose dying in my sleep isn’t so terrible, if that’s how it works out.

Not really sure what else to put here. I mostly just wanted to put some words down somewhere. Maybe people will find my experience helpful in some way.

Just left the Cancer Center and my husband is in remission!!! He still has to undergo stem cell transplant to increase his odds at longevity and to prevent him from having to take multiple meds for years. I am so excites I just had to share. Prayers to all of you undergoing this fight. Keep on fighting.

Was told by my oncologist today that I was in Stringently defined complete remission. Almost a year ago I was near death.

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 have spent almost two years in this group reading your stories and the stories of your loved ones. I’ve tried to remain hopeful with all of you. What a disease this is, this disease I had never even heard of until I heard it whispered about my mom.

I lost my mom last night after an 18 month journey. She was 75 and in excellent health before diagnosis. She tried to do everything “right” for her health, always. Everyone told us to ignore the timelines. There was always new medication and new research. She got her kyphoplasty but got pneumonia, but we still had hope. She started chemo. Her numbers went down. She was feeling really strong. We had so much hope. She got pneumonia again. First time in the hospital. Home. Cellulitis. Home. A blood clot. Home. Bacterimia. Edema. A GI bleed. Septic arthritis. Truly everything that could have gone wrong went wrong for my tiny mother. I watched her body shrink and her bones ache, but somehow she was still always hopeful that she had it in her to bounce back one more time. In the end, she had no bounce left.

She was the funniest, most vibrant person, and she was my favorite person. We have been checking in a few times a day on the phone for my entire adult life. She needed help for the first time, and I loved taking care of her even though she always apologized that I had to do it, and even though some of those days were the worst of my life. I always made sure she knew that I didn’t HAVE to do anything. To be honest, as I sit here tonight, I only wish I could have taken care of her for longer.

I wish for all of you a smoother journey down a road that none of you asked to be driving.

A year ago at this time, I joined this group seeking help for my 64 year old dad, who was diagnosed with mm. At diagnosis, he had low function kidneys and over a dozen fractures in his vertebrate and elsewhere. He also a few months earlier had caught covid and was dealing with blood clots. A previously very active man, he was relegated to a walker and at times, a wheelchair. Obviously this forum was a great resource along with some other places, so I wanted to share an update on my dad below:

Today my dad got results on a biopsy after 12 cycles of induction chemo and is officially MRD negative and in remission! This is after a cocktail of Dara-VRD for all cycles. He opted out of the transplant because he wanted to see if the drugs alone could get him to mrd-negative, and thankfully, they did. He will now go on 2 cycles of induction and then continue on maintenance.

He still has some pain management issues with older fractures, but is slowly finding ways to cope with that day to day and is able to walk, drive, and even ride his bike once again. The kyphoplasty earlier in the year helped a good deal with that also.

We are so greatful for this response, and I wanted to share this information with the group as a motivation that it can get better after your first diagnosis. Keep up the faith and continue to fight the good fight y'all.

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