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

We were recently told my brother had 1q gain. Looking for anyone feedback on treatment options for this type of MM.

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!

'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.

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!

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

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 ?

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.

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.

Question for people who had CarT treatment: What was your free light chains and M spike around 100 days after the treatment?

What is it like going through CAR-T? What advice would you give a person to make it go smoother?

The pharmacy is charging $51,000 for one 1800 ml injection plus the hospital fees. What are you seeing as pharmacy charges for faspro?

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.

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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