I was diagnosed in 2021, had five months of induction then ASCT in November 2021. Since the ASCT, I have been on maintenance of Velcade for about 4 months, then transitioned to Ninlaro. My immunoglobulin levels have never in all that time gotten back up to a normal range. My oncologist has discouraged me from getting IVIG because I haven't had any infections but part of the reason I haven't had infections is I always wear a mask when around other people and don't go out much. Anyone else have experience with IVIG and under what circumstances did you get it?

My monthly bloodwork continues to show my light chain increasing. When I ask my Oncologist should we do something her response is we just watch it! That’s driving me nuts! I had a Stem Cell Transplant in May 2022 and have been on maintenance Lenalidomide 2.5. Has this happened to you and how long did you sit back and watch?

Hi! I'm was diagnose with smoldering Myeloma on November 2024. I have pains in my back and legs. I'm also experiencing vertigo, I have lost balance and feel nauseous must of the time. I feel like I am walking in a tunnel. When this symptoms are really bad I feel confused. I would like to kow if other people have the same experience. Also, since I have been recently diagnose with smoldering Myeloma in the low to medium risk group, have many of you with the same diagnose, been with out treatment ando for haw many years.

I'm currently on a 2.5 year drug holiday, and I'm trying to plan ahead for the event of my relapse and I'm considering Venetoclex as a possible drug, possibly in combination with Kyprolis. I took Venetoclex for a short time along with Darselex Faspro and I lost my sense of taste. That was 4.4 years ago, and I don't know which drug was the culprit. But finally, my taste is showing signs of recovery. My question is whether anyone here has concluded that either Darselex or Venetoclex, or in combination, has caused taste problems as a side effect? Many thanks, and I wish everyone battling this disease the best of luck.

Does anyone know anything about Large Granular LUKEMIA. I was just diagnosed but there is almost NO information on it.

Good Morning! I have a question relating to diarrhea caused by Revlimid (Lenalidomide). After taking Revlimid as maintenance for 5 years I ceased taking it 6 months ago. I still have ongoing issues with diarrhea and still taking Cholestyramine for Bile Acid Malabsorption -with good effect. Has anyone else had issues with ongoing diarrhea after ceasing Revlimid? I am not taking any other drugs atm.

My question is how many MMR vaccines you received after a stem cell transplant (usually 24 months after). Some centers give one and others give two. Just wondering, thank you!

HealthTree, in partnership with CorEvitas, is conducting a study for patients who started Talquetamab (TALVEY) therapy less than 4 months ago. 🔒 The information you share will be confidential and de-identified. Your insights can help shape the future of myeloma research and improve care for others. 💙 👉 Ready to join? Click here to read and sign the consent form: https://bit.ly/3DoCJom ✅ Our team will contact you to confirm your eligibility and arrange the interviews. 🙌 Thank you for helping advance myeloma research! #MyelomaResearch #Talquetamab #HealthTree

Hi! I am looking for a coach ! I'm told I'm in the smoldering phase and I have some pains now here and there after being diagnosed since 2016. I'm meeting today regarding receiving training on new medication to help with some numbers that have changed that should help me with this. I'm needing someone who is familiar with the smoldering phase as well as what symptoms am I to look for for the MM. I'm really in need of someone eho can share their experiences with the beginning of this. My body aches and I don't know if it is arthritis which I have been told for years the pain in my back was or if its the MM. As per my questions you can see I'm all over the place 😵‍💫🤗

Has sweating , particularly from the head, been seen as a concern for a multiple myeloma patient as a part of the therapies? My father has just finished his first cycle of KPd. Thanks

Hello everyone. The CDC (see below) states that immunocompromised people can get the Covid vaccine after a 2 month interval (as I interpret this). I have a lot of international travel this year so the thought of getting a booster/vaccine early is appealing. I see CVS is requiring just a 2 month interval when scheduling.. Has anyone reduced the amount of time between your Covid vaccines to less than 6 months? Was your physician supportive (I’m still trying to connect with mine)? “For persons aged 6 months who are immunocompromised, the recommended interval of the second dose is 6 months but can be as early as 2 months or later than 6 months after the first dose of 2024–2025 COVID-19 vaccine.” Thanks!!!

Any one have experience with Gamunex-C as IVIG med? when I read about it I do not see much information on immunity. It takes a lot about use with ICID which evidently has polyneuropathy as a symptom. I am wondering if this could help with my neuropathy

I have been receiving Darzalex Faspro since the beginning of November 2024. I am currently receiving it every 2 weeks. I experienced awful bruising with my last shot. I have not had bruising with past shots. Does anyone have a possible explanation as to why I bruised so bad? or experienced this happening to them? Was it possibly the way it was administered? Thank you.

Hello, I've recently developed an allergic reaction (severe itching) to venetoclax, which I'm taking for maintenance therapy. As a result, I'm looking to change my maintenance therapy, and would like to know what other maintenance therapy options are there. Revlimid wasn't effective for me during induction therapy, so I can't do the usual revlimid/dex/dara for maintenance. Could you please let me know what your maintenance therapy is, how long you've been on it, and if any adverse side effects you've experienced with it? thank you 🙏

Your state may allow financial grants that help cover out of pocket costs such as copays co-insurance, deductible apply to your max out of pocket. Check with your State Health Insurance program for more information

Concerns about Social Security changes are mounting. Before you rush to take Social Security prior to Full retirement age, check to see how that will impact you fand possibly your spouse financially. Once you make a determination they may be impossible to go back and change. If you have questions on this please request me as a coach c=via the coach website.