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Leslie
Multiple Myeloma Discussion • January 6
1q gain
We were recently told my brother had 1q gain. Looking for anyone feedback on treatment options for this type of MM.
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dtgeistmanranch
Multiple Myeloma Discussion • January 4
Raynaud's Syndrome
Greetings! I was diagnosed with Stage 1. IGgA Lambda multiple myeloma Jan 2022. Induction therapy 6 cycles RVD. ASCT August 2022. Maintenance therapy starting Jan 2023 with Revlimid 10mg, 14 days on 14 days off. Last week I had a sudden onset of Raynard’s Syndrome to my index and ring finger on my left hand. It resolved quickly under warm water. I notified my hematologist and my pcp. Both said not to worry unless it continues to happen or does not resolve. My question is: have any of you who have a similar situation as myself had this happen to you? Thank you so much!
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SpouseOfPatient
Multiple Myeloma Discussion • January 4
Spouse of patient with SMM
'Posting to get started to connect with others. We're overwhelmed & not pleased with practitioners we've dealt with so far. No treatment thus far. We were dealing with 2 different oncologists with differing approaches & one of them recently told us to make a choice. Soon after we chose him, we received a letter from him stating he was leaving. We recently met with him. He advises to start treatment. We are trying to obtain consultation with another oncologist in the office. The office service to connect with someone since has been difficult.
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1finegrandma
Multiple Myeloma Discussion • January 4
MONOCLONAL PROTEIN AND FLC, SERUM Test
I just received my results for this test. There is not a line item mentioned for a Monoclonal Protein, could this mean there wasn't an m-spike detected? I had a CAR T in August 2025 and have had a very low m-spike since but was told it could just disappear. Because I haven't experienced a report with no m-spike, I am uncertain how to read the report. I won't be seeing my local oncologist again until the end of January. So, I am hoping someone here may be able to help interpret it. Thank you!
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TheTimeIsNow
Multiple Myeloma Discussion • January 4
Symptoms with MGUS/SMM
I might have mentioned this before in this forum but am reading research that contradicts regarding symptoms that those of us with MGUS/SMM are showing when so much that you read says it does not have symptoms. What is correct? What symptoms have you all experienced? My biggest symptom seems to be fatigue at unexpected times.......... Thanks for the input. I think they need to research this more
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JonathanT
Multiple Myeloma Discussion • January 3
Low waist back pain
I have done ASCT on 28 February 2025 but I’m still experiencing low waist back pain has anyone experience this and how did you overcome it ?
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Camaroman
Multiple Myeloma Discussion • January 3
Linvoseltamab
Anyone hear anything about this med that was used in trials and showed great promise, possibly avoiding a SCT by using this drug and lowering numbers and the disease in general.
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Spring2
Multiple Myeloma Discussion • January 2
Caregiver questions for outpatient ASCT
Does the caregiver have any restrictions for what they can personally do while the patient is at their appointments during the first few weeks of an outpatient ASCT? We were told by the hospital that they discourage caregivers from joining all appointments so they don't get burned out, so this is downtime for the caregiver. During this downtime, can the caregiver engage in normal activities? Curious what others experiences have been. Can the caregiver go exercise for example? What about going to lunch, a coffeeshop, the gym, or grocery shopping? Or do they have to stay in isolation. It seems they should be fine to.engage in some normal activities provided they use precautions around the patient, just like hospital staff.
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rubyCrocodile
Multiple Myeloma Discussion • January 1
M Spike and light chains after CarT treatment
Question for people who had CarT treatment: What was your free light chains and M spike around 100 days after the treatment?
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JaneF
Multiple Myeloma Discussion • January 1
CAR-T
What is it like going through CAR-T? What advice would you give a person to make it go smoother?
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JimLuby
Multiple Myeloma Discussion • December 31
Darzalex faspro pharmacy charges
The pharmacy is charging $51,000 for one 1800 ml injection plus the hospital fees. What are you seeing as pharmacy charges for faspro?