I am in complete remission from IgA Kappa NDMM with a 1q gain scheduled to start 10mg Revlamid daily and monthly Dara Fastpro with Dex as a premed at 130 days post ASCT. Is it typical to start maintenance so soon?
My husband had his ASCT on Aug 28th 2025. After 4weeks his bone pain started in his arms. His pain is more only at night. The doctor suggested for a radiation consult and they said it’s not necessary now. Any one has this experience and why radiation? We have an appointment with his oncologist later this month. Should we ask for a PET scan and is bone marrow biopsy required?
Telehealth has practically completely gone away unless you are in a rural area. Accessibility has expired. The gov't shutdown has exacerbated the issue.
Has anyone has had teeth implant while on multiple myeloma? I’m interesting about inthe healing process of teeth implant. I wanted to have one, but I’m kind of scared just in case it doesn’t heal properly.
Any one ?????
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Encountering severe body hives with my 1st Rx after my ASCT in MAR. Lenalidomide 25mg was part of my induction therapy (KRd) and I had some minor rashes, but now at 10mg, I just cannot tolerate the hives. I can't take it for any longer than 7 days and I have to stop, use steriods, then try again. I have been trying this since the end of AUG. Anyone else experience this? If so, did a reduced dose ot 5mg or 2.5mg help?
Thanks in advance.
I am 64 years old, diagnosed with MM last August. I was in a medical trial but ended up in the "control" group receiving a ASCT in June. My latest bone marrow aspiration is in....I am MRD Negative (1:100,000)! I am happy beyond belief. We always hope for these results, but don't believe that it can really happen! Well, it does!
Happy to share my experiences with anyone. I am posting this both to share this great news and also to advertise that ASCT really does work. It's doesn't work for everyone and not as well for everyone, but it is still the Gold Standard of Treatment for Newly Diagnosed MM patience - I am a living example!
Moshe Lichtenstein
mlichtenstein.mbl@gmail.com
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Open enrollment for ACA started on Nov 1st and will run till Dec 15th and possibly through Jan 15th or later depending on the state in which you live. I know that deciding on a plan while not knowing if the subsidies are going to continue or not is a challenge. Make sure your contact information address phone numbers as well as income has been updated on the the ACA site. Don't delay registering or looking at possibly other insurance coverage if it is available to you such as spouse employer insurance.
When comparing plans this year, I noticed that the cost of Acyclovir in even the low premium plans has increased dramatically. I wonder why and if there is a generic version for this drug.
Has anyone experienced knee pain and swelling, rigid calf muscles and limited range of motion in the joints (knees)while on Teclistamab? I have had several tests to determine the root cause but everything has come back negative which is leading me to believe that it is a side effect of the medication.
I had Car-T therapy in June of this year and PET scans in October showed the myeloma was still active. I have had one full dose of Talquetamab and will continue with a biweekly dosage of 90mg. I still have bone pains but due for a PET scan in a couple of weeks.
Hi, I did induction therapy with sarclisa, vel, dex, and rev then sct then started on Dara, vel,dex and 10mg relimid. I am coming up to 6 months of this and the doc is suggesting I stop the velcade after 6 months and continue the dara, dex and rel. Anyone else familiar with this?? no adverse effects.
Hi everyone,
I’m on Isa-Kd (isatuximab + carfilzomib + dex 20 mg only week 1) since Oct 2024. Stable VGPR, FLC suppressed.
4–5 weeks ago I shortened carfilzomib infusion (my idea to save time and reduce anxiety in box).
Since then:
Nausea G2 (vomited Thursday night)
Low-grade feverish feeling G1
Headache G2 (taking paracetamol)
Brain fog G2 (worse than my baseline chemo-brain)
KO Friday/Saturday → missed sports which I try to do daily
Labs just spiked:
CRP 1.3 → 6.3 mg/L (+385 %)
Triglycerides 212 → 479 mg/dL (+126 %)
Questions for the group:
Anyone on Isa-Kd / Kd with symptoms + CRP/TG spike after shortening infusion?
1) Did slowing back the infusion fix it?
2) Fenofibrate helped your TG?
3) Any pre-med tricks (montelukast, olanzapine) for delayed IRR?
Thanks!
Our 31 year old daughter has a terrible gag reflex (has all of her life) and is really nervous about getting a feeding tube placed after her Stem cell transplant:-( She is afraid she is just going to throw-up the second they try to place it! She knows that this has been shown to allow her other organs to basically not work so hard and so she can just get the nutrition she needs, but is really freaking out about this! Any suggestions or recommendations? Anyone else have this issue?
Has anyone in this feed know of a situation after a successful Car T Cell Therapy (treatment date June 30, 1025), for several months and suddenly develop swollen masses developing in their neck, head and groin?
This growth developed within 3 Weeks in October after 4 months of successful recovery?
I was wondering if any patients have been diagnosed with MM at a lower bone marrow percent eg 15% or less.
My doctor said that bone marrow is notoriously patchy and can vary based on where it is taken from.