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BobH1
Multiple Myeloma Discussion • October 12
Best Vaccine Timing on Treatment - Tips?
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Greetings! I’m wondering about “timing” for vaccinations. I realize that being immunocompromised I may have a slow, low, or no protective response, but I want to optimize vaccine antibody response. I’m on a 3 weeks “on”-one week “off” schedule. I.e., Wk 1 (Tuesdays) is DKd (Dara-Kyprolis-Dexamethasone) + Zometa + IVIG; Weeks 2 and 3 DKd only, also on Tuesdays. I’m due for Covid + Flu vaccinations. And in mid November I’m also due for my second shingles vaccination. Recent treatments: —04/21 - COVID booster —09/09 - carfilzomib (KYPROLIS)+ dexAMETHasone (DECADRON)+ zoledronic acid (ZOMETA) —09/16 - carfilzomib (KYPROLIS)+ dexAMETHasone (DECADRON) —09/30 -carfilzomib (KYPROLIS)+DARZALEX FASPRO) 1800 mg-30,000 units+ dexAMETHasone (DECADRON)+ immune globulin (GAMMAGARD) —10/05 - SHINGLES Vaccination —10/07 - carfilzomib (KYPROLIS)+dexAMETHasone (DECADRON)+ zoledronic acid (ZOMETA) —10/14 - I’m scheduled for something (s) but am uncertain what? I’d guess carfilzomib (KYPROLIS)+dexAMETHasone (DECADRON). Am uncertain if DARZALEX FASPRO too?? I find scheduling a nightmare. Any ideas what a timing schedule might look like for COVID+ FLU soon and SHINGLES in mid-November? Thanks so much.
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ADeGreg
Multiple Myeloma Discussion • October 12
Apicectomy & MRONJ Risk: Any Experiences?
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Hi, Just wondering if anyone has had to have a minor Apicectomy. I was diagnosed with Multiple Myeloma November 2019 and had a stem cell transplant in 2020, I had about 11 rounds of Zometa infusions. It has been over 3 years since having the Zometa infusions and I’ve recently started experiencing pain in the gum area above 2 of my front teeth. My only option other than staying on pain medication is to have a minor Apicectomy and a retrograde root filling. I’ve been told that there is a small risk of developing Osteonecrosis of the jaws (MRONJ). Has anyone had similar experience. Thanking you in advance.
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DIahanna • Admin
Multiple Myeloma Discussion • October 10, 2025
ACA Subsidies May Expire: What to Know
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What congressional districts will be hurt the most if the ACA subsidies expire? Lynne Cotter Oct 9, 2025 KFF Nationally, individuals and families buying subsidized ACA coverage will see their premium payments more than double on average if the enhanced tax credits expire. Increases for out-of-pocket premium payments are not uniform, however, and older people with incomes over four times poverty would be hit hardest. How enrollees would experience the premium changes in 2026 varies by income, age, and geography. Without the enhanced tax credits, the out-of-pocket premium for an individual, age 40, with an annual income of $32,000, would rise by $122 per month, or about three times the premium payment with enhanced tax credits. This increase will happen in most congressional districts, except Alaska and Hawaii due to their different poverty level guidelines. In Alaska, monthly premium payments would increase from $15 out-of-pocket to $129 if the enhanced tax credits expire, a similar dollar increase but a jump of nearly 800%. Premiums would increase most for older adults making just over 400% of the federal poverty level, since they would no longer qualify for any premium tax credits. For a 60-year-old couple making $85,000 a year, losing the enhanced tax credits would increase their premiums by about $1,900 per month, based on a national average premium increase of 18%. There is wide variation in average state-requested premium increases and in insurance costs within congressional districts. Among the five congressional districts with the highest premium increases, premiums will increase by over 500%. For a 60-year-old couple making $85,000, the congressional districts with the greatest increases per month: WY: 693% ($602 to $4,777) WV01: 654% ($602 to $4,540) WV02: 599% ($602 to $4,210) CT04: 537% ($602 to $3,833) IL12: 535% ($602 to $3,823) The congressional districts with the smallest increases in the continental U.S. are all in New York, which uses community rated premiums: NY26: 110% ($602 to $1,265) NY23: 119% ($602 to $1,317) NY24: 142% ($602 to $1,457) NY22: 143% ($602 to $1,461) NY20: 150% ($602 to $1,505) The map below shows congressional district level ACA Marketplace out-of-pocket premium increases should the enhanced premium tax credits expire, for a 40-year-old individual making $32,000, and a 60-year-old couple making $85,000. Figure 1 Premium Payments for Subsidized Enrollees Will Increase Nationwide if Enhanced ACA Subsidies Expire Percent Increase in Average Monthly Premium Payments for Benchmark Silver Plan Without Enhanced Subsidies, 60-Year Old Couple Making $85,000, 2026 40-Year-Old, $32,000 60-Year Old Couple, $85,000 < 100%100%–200%200%–300%300%–400%≥ 400% Note: Premiums reflect the state median increase from rate filings applied to 2025 amounts and weighted by plan selections. Premiums do not reflect state-provided subsidies. Hawaii and Alaska have different federal poverty levels; the premium increase for an Alaskan 60-year-old couple making 401% of poverty would be substantially higher.
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Fitgmom
Multiple Myeloma Discussion • October 10, 2025
When Did You Start Socializing After Car T?
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How soon after Car T did you decide to be around people. Go out to eat etc ? My immune system is recovering. My absolute neutrophils are almost at normal range as are my white cells. I did receive one dose of IVIG. I am 39 days post Car T Thanks
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Amcgrady1
Multiple Myeloma Discussion • October 10, 2025
Immunoglobulin Recovery Timeline Post-SCT?
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I am about 150 days post stem cell transplant for multiple myeloma. All my labs are normal except for the immunoglobulins and protein sep. when will these move to the normal range? I am currently in remission and will begin maintenance therapy soon of revlimid and daratumamab., along with zometa.
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DIahanna • Admin
Multiple Myeloma Discussion • October 10, 2025
Navigating Changes to Telehealth
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Effective October 1 most telehealth has gone away. Reach out to you provider and see if they have alternative ways of meeting with you.
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lemonEagle
Multiple Myeloma Discussion • October 9, 2025
Financial Support for Trial Travel?
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Clinical trails and financial support if you have to travel and stay in another town? Some experiences would be of interest. Thank you!
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Gerii2002
Multiple Myeloma Discussion • October 9, 2025
Help With Severe New Pain: Is This From MM?
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I need help! I do understand we are sick, but not doctors ! For 2 nights , I wake up with pain in my lower back it goes across my stomach and runs down to just below my knees! There are so many markets on my legs like someone beat me up. Finally my hubby will wake yup, because I am screaming so so loud, I put on my pain patches, I take a pill the oncologist told me to use when I am in that much pain, yes it works and I go back to sleep! I am freezing, an I have 2 days to drive home. My question is that pain from MM? They put me on water pills, I had been floating in my own water, can someone tell me what is multi myloma?
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BobH1
Multiple Myeloma Discussion • October 9, 2025
Clarifying My Treatment Path and Next Steps
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Greetings! Someone recently asked me if I was in the “Induction” phase and I had no idea how to answer so I texted my oncologist. She wrote back, “The stages of where you are on treatment does not really apply to you as we feel that you'd be transplant ineligible. We'd say you're on your second line therapy. “ Since I’m on dexamethasone, Carfilzomib & Dardfaspro that I’m on DKd but no one ever told me that, which prompted me to respond, “ Being in this particular 2nd line, I assume I’m DKd. …When you say I’m ineligible for autologous stem cell transplant (I assume you’re referencing ASCT) I assume also that doesn’t rule out CAR-T (autologous or allogeneic)? No?” This was just an hour ago and I of course haven’t heard back. They are VERY prompt so I’m fully confident I’ll know soon. Any thoughts about the clarity of our text exchange?
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TimJohnson
Multiple Myeloma Discussion • October 9, 2025
Discussing New In-Vivo CAR-T Therapy
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I just heard about in-vivo CAR-T, where they jab you with some magic stuff and it generates the modified T-Cells right in your body. Has anyone else heard about this? One goal is to administer it as soon as someone is diagnosed but also as an out patient service because it doesn't require the multiple visits and pre-work. Sounds really cool and I'd like to hear from anyone who knows more.
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XimenaG • Admin
Multiple Myeloma Discussion • October 8, 2025
Supporting MM Research: Walk With Us in Honolulu
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🌺 Join HealthTree at the 2025 Honolulu Marathon! 🌺 We’re excited to share that HealthTree is an official charity partner of the 2025 Honolulu Marathon, and we’d love for patients, caregivers, and friends in our community to be part of this experience. 🏃‍♀️ By joining our first-ever VIP Charity Team, you’ll not only take part in an unforgettable race in paradise, but you’ll also be helping raise funds to improve care and research for blood cancer patients. Here’s what’s included: ✔️ Low fundraising minimum ✔️ Personalized training and fundraising support ✔️ No race time limit; walk, jog, or run at your own pace ✔️ Unforgettable memories with the HealthTree community Every mile matters, and together, we can make a difference. ✨ ⏳ Spots are limited, apply today! 👉 https://give.healthtree.org/event/honolulu-marathon/e710342?c_src=socialmediaorganic 📩 Questions? Email us at support@healthtree.org
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Joyful
Multiple Myeloma Discussion • October 8, 2025
Managing Revlimid Neuropathy After Years?
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I have been taking 10 mg Revlimid 21 days a month for 3-1/2 years. Within the past 6 weeks I now have neuropathy that started in my feet and progressed to my calves. Any help from others will be most welcome. My MM is well controlled but this new development is quite difficult to deal with. I'm seeing my doctor in a few weeks but would appreciate any comments from others as well as how they deal with this if they have it. Thanks in advance for your help!