
#myelomasurvivor #progressive lover of good humor, dogs and babies, friend of #BillW
St Paul, MN
Joined October 2011
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Barb retweeted
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.
Barb retweeted
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.
Barb retweeted
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
Barb retweeted
MajesTEC-3: Teclistamab + Dara in Cytogenetic & Functional High Risk Relapsed #Myeloma | #EHA2026 #EHA26 #mmsm @rahulbanerjeeMD @healthtree
youtu.be/GOcd9FIdwXo
Barb retweeted
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
CIPN is such a big problem, and yet nothing seems to help much, and nothing seems to prevent it
Alliance Trial - duloxetine does not prevent oxaliplatin induced peripheral neuropathy
ascopubs.org/doi/10.1200/OA-…
I’ll get the Covid vaccine every time it’s offered.
The report - that CDC leadership blocked after clearing scientific review - showed the COVID vaccine cut ER visits and hospitalizations for healthy adults by 1/2 last winter. It followed widely used methods, incl in a CDC flu report last week. @bylenasun wapo.st/41JhAhb
Love these people. I hope our elected reps listened and learned.
Hill yeah, we advocate! Last week, the IMF brought patients & care partners to Capitol Hill for a Myeloma Action Month Hill Day. Advocates shared their stories and pushed for cancer drug parity, faster access to care, clinical trial access, & research funding. #MoreThanMyeloma
Barb retweeted
*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.
Barb retweeted
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 !
#mayo is such an amazing place. mprnews.org/story/2026/03/13…
I am #morethanmyeloma. I’m almost 20 years since diagnosis and no evidence of disease since my 2nd sct in 2014.
How has your life changed since your myeloma diagnosis? Share with us below. This Myeloma Action Month, it’s time to tell your story. You are #MoreThanMyeloma, and your story should be known.
We thank @Karyopharm for helping us spread awareness.
I think I fall into the cure group🥳
Replying to @VincentRK
We have come a long way in myeloma and we are on the threshold of saying it may be a curable disease.
We have come a long ways in myeloma that we may even be able to use a strict definition to identify patients who are potentially cured.
Thanks to @Myeloma_Society for giving me the opportunity to present at the Cure summit. @NikhilMunshiMD @myelomaMD
@thanosdimop @mvmateos @SagarLonialMD @IMFmyeloma
Barb retweeted
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
Barb retweeted
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
Barb retweeted
"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
























