Myeloma newly diagnosed

I was diagnosed 3+ yrs ago at age 82 after quick transition from MGUS to SMM to full MM. Treatment started and continues with Revelimid, Darsalex, Acuclovir. Along with other pills I take for long standing cardio issues. Frequency of Dasalex infusion have decreased from weekly to monthly and Revelimid from 20mg daily to 5mg on alternate days, always 21 da on and 7 off. I’ve been in remission for over a year with no M spike and good lambda/kappa readings. Some continuing fatique and diarrhea is an off and on occurance, but no other issues of note. Generally there are a lot of other more serious cancers but my original forecast was something like 9-12 yrs and I plan to exceed that with no car t in the plan. I did go to Mayo-fl initially and see a mm specialist at Emory every six mons, while my treatment and testing is done by a local oncologist/hemotologist.

I have IgA Kappa light chain smouldering MM with the 1q21 gain mutation. High risk but no CRAB or symptoms. I will undergo I-VRD for 4 mo and then hopefull an autologous BMT. I used to be an athlete, and will continue to exercise during chemo (supposedly helps the fatigue). I was diagnosed with MGUS 10 years ago after neuopathy and falling (technically from black ice); 3 years ago it started ramping up. Tomorrow I get a PET/CT scan and rsults on Wednesday. I do have weird dreams; this morning was a passenger in a car and the driver decided to take a sharp right over a cliff. I said, "I'm going to die", and then the dream switched to me in a room (no injury). Reactions from friends and familty are all over the place. Make sure you have a good support network, some for crying on shoulders, others for appointments, escapes, and normality.

@donna195 my husband is taking darzalex and so far he hasn’t had a single side effect from it. Thank God, he is on his last two weekly, which they extended a little I think because he has light chain myeloma, and it got out of control.
My advice is don’t forget your pre meds, they protect you from bad side effects. My husband has taken a ton of revlomid in his sixteen years of myeloma but now they are giving him pomalyst instead, which is really just second generation revlomid.
This can be a really scary time but having faith in your team is a giant thing. I will be thinking of you this week.

@auntieoakley thank you so much. This is all new to me but the tif bits and words of encouragement help more than you know!

I have IgA lambda MM diagnosed in 3/2025. The uncertainty has been the difficult part of this process for me. I went through drug induction (Darzalex,Carfilzomib, dexamethasone and revlamid, followed by autologous stem cell transplant and restarted chemo in February, but only 1x/month. I also was diagnosed with metastasis to my spine last March. I have not had overwhelming side effects from the chemo, but the pre meds and learning about the side effects is important(though can be anxiety producing). Take small bites of information at a time(eating the elephant).
I heard a lot of stories from what to expect for stem cell transplant- many frightening and a bit overwhelming. I chose to put my faith in God and the process . I also chose to be a participant and observer at eh same time, thing that I might or might not get bad side effects. There were some side effects but my team helped me manage them.
Finances area. concern as I have not worked since 4/2025 and had no short term but have long term disability. It was suggested that I apply for SSDI(I am 64 but wasn't ready/planning to retire), which I did do and received in January for a limited time to be reviewed this fall. If your local cancer center has a financial person(ours in Maine does), connect with them. If you have a financial planner, reach out to them. This diagnosis has made me and my husband start considering many options.
I exercised (walking, strengthening and gardening/yardwork) until transplant. I think I did well with minimal symptoms after transplant because I was in decent shape and not really sick.
Staying positive is the most important thing. I choose to see this as a chronic illness, focusing on doing what I need to do and trusting the medical field to do their part. I have met(virtually ) many MM patients who are more than 10 years post diagnosis who are doing well. This and the continuing research give me hope for my future.
Give your self some grace, limit your time on the internet. Use trusted resources.
You and do this!
Sending prayers and hugs.

@3sew1 thank you so much for your response. It’s been a journey . I started chemotherapy yesterday and I am doing ok thus far! I am apprehensive about the transplant but I am healthy and no symptoms other than lesions. I’m happy to hear that your experience wasn’t awful. I wish you well!

My hubby started about 5 years ago seeing an oncologist because his VA doctor found he has very large red blood cells. Fast forward, present: was told in Oct. he has MGUS, trying to wrap that around our brains as to WHAT,WHY,WHEN, (because in 2023 had triple bypass and valve replaced) nothing showed then???? So then December 24, 2025 our oncologist, back from month in Spain, tells us he has multiple myeloma, (well Merry Friggin Xmas to you too!!) once again the questions, with very few answers. I have Lupus and Sjogrens (everything is dry,dry,dry) and was once told, if the disease doesn't kill you, the Medications will.
So next thing we know he is taking drugs (expensive ones) to help and are told we will go to LA, to USC for a bone marrow transplant. WHAT???!!! I haven't even finished trying to find out what MGUS is and now we're traveling, having a transplant??!!!!
I understand cancer is a fast moving disease, but come on cancer let me catch up! My hubby does NOT read a thing about his cancer, he says;" just tell me where to go, when to get there and what I have to do", you got it, I'm his personal secretary, just cause I like to read ( but I read Murder Books, like James Patterson) this is not the same reading. Any how it is not a good outcome for him, he is 68 and I am 77, he was to take care of me in old age. The timing is not great (it never is), but you learn to deal and deal I will. I lost my only son and had to take him off life support, this will be a PEACE of something. Just so its not long drawn out and he has no pain! That is what I hope and wish for !!
So if anyone out there has experienced the bone marrow transplant you may write or call us. thank you all for listening.

@dianevw Whooosh…I am trying to wrap my head around your post this morning. Goodness, you and your husband have a lot of medical drama going on right now! No wonder you’re feeling overwhelmed. And please accept my sincerest sympathy over the loss of your son. No mother should ever have to endure that depth of pain.

Ok, let’s break this down a little bit so it’s in digestible bites.
I’m sorry to hear about your own issues with Lupus and Sjogrens. Both of those can leave an impact on the mind and body, leaving you exhausted having to deal with the side effects. It’s so important to take care of yourself during this time as well. Which I know…that’s challenging if you’re having to be your husband’s ‘personal secretary’, taking responsibility for his care as well as your own. That’s a tough situation to be in. If he’s coming up on a stem cell transplant, he’s will need to accept a certain level of responsibility for his after care and his recovery. His medical team will be educating him as well as you. Don’t feel that this is an onus only on you for his care. He needs to be involved…well, I mean he WILL be involved so he has to learn about this.

The what, why and when with your husband’s diagnosis of MGUS and now Multiple Myeloma (MM) isn’t always definable. Blood cancers and conditions can start slowly over time. MGUS (Monoclonal gammopathy of undetermined significance) is a condition caused by the development of altered plasma cells. That condition, in some people, leave them with an increased risk of developing multiple myeloma or other plasma cell disorders over time. There isn’t always rhyme or reason to how or why this happens and there may not be any one thing you can point to. It ‘just happened’.
You mentioned your husband has VA doctors. There may be some link to his medical condition relating to his certain exposures to toxins in the military.

It sounds like your husband is already taking medication to reduce the level of cancer cells in his body. Many patients with MM are able to have an autologous stem cell transplant (ASCT) using their own cells to help replenish the body with healthy cells after treatment. It’s not an actual bone marrow transplant(BMT or SCT) because the marrow isn’t being transplanted from a donor to your husband.
Basically what will happen during that procedure is your husband will go through treatment such as he is now. If he reaches remission, his doctors will consider the ASCT.
Some time preceding the transplant, your husband go through stem cell harvesting. The cells are then preserved until he is ready to have the transplant.
Transplant time has him in the hospital receiving preconditioning chemo to clear his body of any remaining cancer cells. Then his own cells will be infused back into his body via an IV (picture a blood transfusion) where the cells will eventually find their way back into his marrow and set up housekeeping again. Within a couple weeks the stem cells will be producing healthy red/white cells and platelets again. Recovery can be slow, the first 3 weeks or so being the most challenging with fatigue, possible nausea, etc.. But after that it is usually a slow, steady progression of regaining strength, stamina and health.

There’s more to it but that’s it in a nut shell. He may have to be in a hospital setting for 4 to 6 weeks or so, depending on the protocol of the hospital where he has the transplant.

The next step would be to meet with a potential transplant team. Do you live far from USC?

@dianevw
Yes, we live in Las Vegas, Nevada and it is a 5 hour drive out to USC. Even if we went elsewhere it will be a drive. I know the Mayo in Arizona, we lived there for a time. It really sounds like we might have to rent an apartment by USC if he will be there a time.

https://podcasts.apple.com/us/podcast/the-bloodline-with-blood-cancer-united-podcast/id1284430485