Barb (@bkinoglu) profile picture

#myelomasurvivor #progressive lover of good humor, dogs and babies, friend of #BillW

St Paul, MN
Joined October 2011
Photo by Barb (@bkinoglu)Photo by Barb (@bkinoglu)Photo by Barb (@bkinoglu)Photo by Barb (@bkinoglu)Photo by Barb (@bkinoglu)Photo by Barb (@bkinoglu)Photo by Barb (@bkinoglu)Photo by Barb (@bkinoglu)Photo by Barb (@bkinoglu)Photo by Barb (@bkinoglu)
Today, we honor the first responders and everyday citizens who became heroes 25 years ago. Exposure to toxic carcinogens has left many survivors facing cancer, including multiple myeloma and other blood cancers.
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RETWEET if you stand with Dr. Fauci!
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Updated FAQs on newly diagnosed multiple myeloma for 2026! 1. Which frontline regimen to use? Quad regimen, either Dara-VRd or Isa-VRd 2. How long to give the Quad regimen? 4 months and then transplant, or 6 months if transplant ineligible or deferred 3. What maintenance after initial therapy? Standard risk: Dara or Isa plus Lenalidomide High Risk: Dara or Isa plus Lenalidomide; or bortezomib plus Lenalidomide 4. How long to give maintenance? Standard risk: Lenalidomide for 2 years and stop; Dara or Isa till progression. High risk: Till progression. 5. Is transplant still recommended in eligible patients? High risk myeloma: Yes. Standard risk: Early vs delayed- Shared decision making based on age and patient preference. 6. Definition of High risk myeloma? Del 17p is high risk by itself All the others (4;14, 1q, 1p, etc) all need two abnormalities together to call as high risk. (P53 mutation and bi-allelic del 1p also high risk; but small numbers) Check out myelomarisk.com to make this assessment easily. 7. What about CART or bispecifics in newly diagnosed myeloma. Totally Investigational. Done only on approved clinical trials 8. What about frail patients who cannot tolerate quadruplet? Triplet: DaraRd or IsaRd; if that’s not possible or safe: Rd or even single agent Dara may sometimes be needed at least initially till performance status improves. 9. What about patients with acute renal failure? Prefer Dara-VCd rather than Dara-VRd 10. How long to give the Dex? Keep Dex only for initial 4-6 months. No dex in maintenance.
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Multiple myeloma is 2x as common in Black Americans, yet delayed diagnosis remains common. Oya Gilbert waited 2 years for answers. This #Juneteenth, he's turning his diagnosis into action — one lyric at a time.myeloma.org/blog/one-lyric-t… #HealthEquity @HHHHFoundation
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It's the truth 👏
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I was in notified by the same insurance company, Blue Cross and Blue Shield of Minnesota that the patient has to fail thalidomide first before receiving Len. So I am now in the year 2002 please RT this so executives at Blue Cross and Blue Shield. See what a bunch of morons they R
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*prior authorizations, with the Improving Seniors Timely Access To Care Act *promote clinical trials with the Clinical Trials Modernization Act *oral parity through the Cancer Drug Parity Act These will not only help the myeloma coMMunity, but the entire patient population.
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Day 27: Measurable Action! Yesterday, the @IMFmyeloma #advocacy team brought 24 advocates to Capitol Hill to engage in 47 meetings with members of congress. Copying @RiottoMa words on patient voice in advocacy. What powerful action during this #MyelomaActionMonth !
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Did you know that multiple myeloma is a cancer of the bone marrow plasma cells? @jmikhaelmd explains. Learn more about myeloma and share this March during #MyelomaActionMonth . #AskTheIMF
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Connect with the myeloma community, build your support network, ask the experts your questions, find support in your community, and more at the FREE IMF Myeloma Community Workshop in #Minneapolis on April 25! Will we see you there? Save your seat: mmsm.link/4qvcAY2
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"Multiple myeloma hits our community hard," shares actor and artist Ice-T. For #BlackHistoryMonth, The IMF is spreading the message about multiple myeloma in the Black community. Know the signs. Share with your friends today. #IMFMPOWER
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“Love would never do that” 💯
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The ⁦@IMFmyeloma⁩ is happy to be part of the Fifth Biennial Multiple Myeloma Symposium in Jamaica #kNOwMyeloma #myeloma ⁦@jmikhaelmd⁩ ⁦@IMFmikeMYELOMA⁩
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Lani's husband Tawhai is living with myeloma. Explaining what the whakatauki means to them, she says "This is not a battle that can be won alone, we stand with all the other people in New Zealand fighting for the right to treatment." #kNOmyeloma #BloodCancerAwarenessMonth
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Happy start of spring & Blood Cancer Awareness month! This month we'll be sharing posts to help people #knowmyeloma. We would really appreciate you sharing our posts, and any posts you see from @IMFmyeloma & other myeloma orgs. Let's get the message out there!
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