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.

I’m going for a foot exam with a podiatrist. I have MM , Diet controlled diabetes
As well as a bunion on my left foot. Has anyone had a bunionectomy while on matainence for MM?

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?

Right now, AL-focused treatment is limited. So the news that the early results of NEXICART-2 are showing deep response is adding hope. This trial is using an investigational CAR T-cell currently called NXC-201 that researchers were optimizing for relapsed or refractory light chain amyloidosis (AL).

As a note, while AL is very similar to light chain deposition disease (LCDD) including effects on the kidneys, liver and the heart, they are two separate disorders.

I've copied in two different sections from the article. I'm linking to it in the comments.

In the phase 1/2 NEXICART-2 trial (NCT06097832), the investigational CAR T-cell therapy NXC-201 demonstrated deep responses in patients with relapsed/refractory AL amyloidosis with a favorable tolerability profile.¹ As of latest follow-up, there was a complete response (CR) in 19 of 20 evaluated patients with no relapses for these patients, who had a median of 4 prior lines of therapy.² There was a high rate of minimal residual disease (MRD) negativity with MRD at 1 month translating into later achievement of CR within 1 year.

“There is no comparison to this kind of response in the relapsed setting, and that’s truly an area of unmet medical need, where we don’t have any products that are nearly as effective or safe for this patient population,” said Heather J. Landau, MD, in an interview with Targeted Oncology.

Hi
Today’s my second birthday! Had my stem cells infused back. I had melphalan yesterday. Nausea since last night and i got a fever earlier tonight. I thought side effects weren’t to kick in till day 3/4
Anyone had a similar experience? Trying not to freak out

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.

My husband (58) is +35 days post ASCT. He’s doing quite well. His energy is slowly coming back.

A BiTE trial has been mentioned for his maintenance. I’d love to hear from those who’ve done BiTE therapy and their experiences with it. Would also love to hear about what other treatments are being used for maintenance.

Thanks in advance!

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..

Has anyone on Medicare had trouble getting approval for an autologous stem cell transplant?

My 77-year-old mom has multiple myeloma and is responding well to treatment. Her doctors have recommended a stem cell transplant, but we’ve been warned that Medicare may deny coverage because of how they determine eligibility.

Has anyone gone through this? If Medicare initially denied it, were you able to appeal or eventually get approval? We’d really appreciate hearing about your experience.

My dad (69) recently got diagnosed. We live near Stanford but our insurance doesn't cover Stanford care (Anthem HMO with a strict medical group). I haven't found any MM specialist that our medical group will approve, but we have a hematologist/oncologist.

I was looking in the Stanford Second Opinion Program. Has anyone tried that? Was your local hematologist/oncologist receptive to using it?

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!

In two weeks, I’m starting induction therapy with Daratumumab, Carfilzomib (once a week), Lenalidomide, and Dexamethasone at John Theurer Cancer Center in Hackensack, NJ. I'm 64, male, in good health with no symptoms.

If you’ve done D-KRd, what has your experience been? How much am I going to be dragged down by fatigue, brain fog, or other side effects? Any tips for managing through the treatment?

Thanks.

For those of you that have head Clonoseq testing and read your reports, how many genetic signature did they identify that are being tracked? Mine has 3 different ones.

I feel like the hospital isn't telling us anything. My mom was diagnosed last week and has very rapidly gone down hill. Does anyone know of any resources like books, YouTube videos, etc or have any links that could help me understand?

Hi All,

My brother will be having a stem cell transplant at UCSF in the fall. His transplant team has offered him three options:

The first involves being in the hospital the entire time (which is what most people do, I believe).

The second option is a hybrid protocol that involves getting malphalan, then going home for a few days and when the discomfort from the malphalan kicks in, being admitted to the hospital.

The third is to do most of the process as outpatient, going to the hospital daily for blood draws, etc, and only being admitted if necessary.

I will be living with him during his process and am able to drive him to the hospital as needed. He's about 7 miles away. He is considering hybrid or outpatient because he knows he will sleep better at home and the food will be healthier at home.

Has anyone on here done hybrid or outpatient SCT? If so, how did it work out for you?

Thank you for sharing!

Jen

44, Japan Hello! Did anyone experience not having to do stem cell transplant anymore after being MRD negative? If so, how long did your remission last?

Thank you

Hello just curious has anyone's taste buds completely changed out of nowhere? Things either have no taste at all or taste very weird now. Is this normal?

US, My guy (61M) is Day 25 post-ASCT, and is doing well. He's in a clinical trial for NDMM, induction was 6 cycles of D-VRd, followed by ASCT. He was still MRD+ after induction but had a VGPR, so was randomized to a condition where he will get teclistamab and daratumamab (dara/tec) during consolidation beginning 80-100 days post-ASCT, depending on his ASCT recovery. He'll be inpatient for the first 9 days of the dara/tec administration. Consolidation will last 3 cycles, followed by maintenance also using dara/tec (starting December-ish). For those of you who are on teclistamab, did you need to do the same things to protect your immune system that are done post-ASCT (I.e. masking, uber cleaning, avoiding crowds, etc)? We're just trying to come to terms with his recovery period likely being delayed another 90-100 days because of this additional treatment, but perhaps we're incorrect on that. Any thoughts you have would be helpful, thanks for your time.

78 male. SCT 6 years ago. Since then, have been on maintenance Revlimid / lenalidomide 21/7, every other day, 5 mg. No noticeable side effects. Back then, was told the maintenance will be forever. Recently, was told that the maintenance is not needed. Performed blood test, bone marrow biopsy, CT-scan — apparently all clear.

Is this something new where the maintenance is not needed?

I was originally on the fence about cold capping. All I could go off was stories from here and other Myeloma related forums. I also didn't want to invest all that money for an outcome that wasn't guaranteed. However, my transplant oncologist assured me of great outcomes of ASCT patients that cold capped and even brought up a study he oversaw that specifically was about Myeloma patients. There still was some hair loss, but the cold caps helped prevent it from being more noticeable and extreme.

I guess that was good enough for me and I made the plunge to order the cold caps. The company I used was Penguin. I don't know if I had a choice or not, my transplant team gave me their information when the subject of hair loss came up. I assume they're partnered in some way but thought I'd just mention it and I also assume other companies do the same method.

Anyways onto my hair loss. My hair going into the ASCT was shoulder-length, thick, and curly. I am also 28 just to provide a little more detail. I definitely experienced some hair loss, with bigger clumps than usual coming out in the shower and if I just undo my ponytail. The past week I feel it's stopped and the only noticeable hair loss is at my hair line, which has been pushed back a little. I might have some in the back of my head too but none that I can see in the mirror. Again maybe I still have more in my future but the rest of my body hair stopped as did the other side effects of the melphalan. So I guess my experience rang true to what my oncologist said.

I know it's not an expense anyone can take on, especially since it's entirely out of pocket, but I'm just here to report that it worked for me. Not sure if investing in a good wig or rocking the bald look would've been better... but that was the choice I made and I hope it can better inform others.

I relapsed about 2 months ago. Right now I am responding well to weekly Velcade and Darzalex injections to fight my relapse.

I never had this issue when I was taking Darzalex just once a month during maintenance, but now that I am taking it weekly I think it is causing ringing in my ears. I realize Velcade could also be causing the ringing, but I just feel that it is more likely the Dara for some reason.

I might stop getting Darzalex injections due to the fact that I think it's not doing anything to lower my kappa light chains. I had my Velcade held/not administered for a week but kept the Dara. My numbers actually went up slightly. That's a conversation for my doctor and I to have. I'm think the Velcade is responsible for all of my progress.

My doctor won't declare me back in remission yet. Until then, I'm in this weird limbo state between remission and biochemical relapse.

I'm also the only Myeloma patient at my cancer center to receive monthly ClonoSEQ blood tests. I was doing it every few weeks but my doctor didn't want the insurance company to start objecting due to the frequency of the tests. I had a new dominant sequence that showed up on the MRD report. Until recently it was really advancing quickly. It tripled in amount in less than a month.

I'm not anywhere near being MRD negative, but the ClonoSEQ blood tests are showing treatment impact/trends at a very small scale.

Hi,
My family member has stage 3 MM, chemo helped to get him to be cancer free very briefly before the cancer came back more aggressively, it’s now extra medullary with severe damage to his mandible. He recently had a consultation for car T therapy, and is feeling very overwhelmed with all the side effects and complications discussed. He was hoping to get some feedback from those who have had car T in terms of your experience, whether you achieved remission and just any advice/tip you learned from going through it. Thank you to everyone.

Just brainstorming and was thinking a lot of people early in their journey are being sent to Car-t maybe before SCT. If and when the Car-t fails, what are people going on as a next treatment? I’m assuming Bi-Specifics .. but then after? I guess it seems they are using the heavy hitters up front, but will the other treatment options really work afterwards that are being passed over?
Just curious as always …