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kmburke60016
Multiple Myeloma Discussion • January 8
Retirement
Hello friends. I'm 54 years old, living in the US, was diagnosed in spring of 2024, high risk. I work at a medical school at a major hospital system, where I also get my treatment. I am a single mom with one 18-year-old daughter who is a freshman in college. Her tuition is covered, and her room and board are being paid for out of a 529 plan. I'm currently in remission. I am beginning to think about the next several years of my life. I have a Roth IRA and retirement at work. I'm not ready to retire yet (I don't think it would be financially feasible at this point, would like my retirement funds to continue to grow). But when I think about the future, I want to be able to enjoy myself while I have a good quality of life, and I also want to set my daughter up for her future success. I've talked to my retirement fund's financial advisor, but he didn't really have any answers or guidance for me. Is anyone else here in this boat, or have you decided to retire early, or have you decided to keep working, etc.? And for those who are financial experts, what are the ramifications of retirement before 65, when you have an incurable cancer?
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sapphireLlama
Multiple Myeloma Discussion • January 8
Car-T
Need to have Car-T soon. Can anyone tell me the kind of car-t you have had .the side effects and how long it took you To recoup…. Feeling nomal
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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?
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DIahanna • Admin
Multiple Myeloma Discussion • December 30
Higher premiums for ACA plans
For those of you who have taken advantage of the subsidies for ACA premiums, you may see a significant increase in your premium which you will be responsible for. Make sure you are taking advantage of grants that may be available to you to help offset the costs of your tratment. Reach out to a financial coach to discuss your options.
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CHidalgo
Multiple Myeloma Discussion • December 29
Neuropathy and Maintance
Hello! I have 2 issues I would love your advice with: 1. I am about 2 months post SCT. I think I just developed neuropathy on both my hands but not sure since I have never had it before. Is it normal to develop neoropathy 2 months after SCT? I did not experience this during my induction treatment. What exactly does neuropathy feel like for you guys? What has worked for you to relieve symptoms? 2. I am about to start maintance drugs. Doctor suggested Velcade. But with my neoropathy I am not sure. Worried it will make it worse, I did not experience this while on velcade during my induction treatment. Has anyone been on this for maintance and how did it work for you? Other option is Lenalidmide. I am concerned with the possible sife effect of other cancers....I was also already on this with no major issues just worried since I will be on it for a long period. Thank you for taking the time to read my concerns!
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XimenaG • Admin
Multiple Myeloma Discussion • December 29
A Heartfelt Thank You to Our Community
As we close our 'Why I Give' campaign, we would like to thank every patient, caregiver, supporter, volunteer, and team member who shared their reason. Your voices filled this season with hope. At HealthTree, YOU are the heart of our mission. Your courage, your stories, and your willingness to stand with us are what move research forward and bring us closer to cures every day. Thank you for showing up. Thank you for believing in what’s possible. #WhyIGive #WeCareWeCure #HealthTreeGives #BloodCancerCommunity #TogetherForACure
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selenasuarez
Multiple Myeloma Discussion • December 26
Caregiver Working During SCT?
Hi everyone — I hope you had a great holiday. My mom is preparing for a stem cell transplant at the end of January, and my dad has received an in-person job offer starting around that time. As we plan for caregiving, we’d appreciate guidance to help us decide whether he should accept the role. After the transplant, what level of at-home support is typically needed, and for how long? Is 24/7 care required, or could she be alone during the day if my dad worked an in-person 8–5 job? From an infection-risk standpoint, is it generally safe for the primary caregiver to work outside the home and return daily? How do families usually manage work and caregiving during recovery?