As I celebrate 28 yrs living w/ myeloma this holiday season (2023), here is my CART Journey:
13 months out post-Carvykti, I am
· MRD -ve
· Pet/CT -ve
· Mass Spec -ve (for 1st time ever)
· No M-Spike
· Normal Freelight (&Ratio)
🧵
1)
Congratulations to
@mvmateos
for being the 2023 IMWG Robert A. Kyle Lifetime Achievement Award recipient.
The 1st woman in the award's 23-year history, Marivi is a mom, a scientist, a singer, and a compassionate doctor.
#mmsm
CC:
@BrianDurieMD
@VincentRK
I often get asked what the reach and impact of the International Myeloma Foundation is.
@IMFmyeloma
has a large reach and provides Research, Education, Support, and Advocacy to myeloma patients around the globe.
Dr. Lentzsch, congratulations on your election as co-chair of NCI's myeloma committee alongside Dr. Raje.
@SLentzsch
@NoopurRajeMD
#mmsm
Thanks to outgoing co-chair
@myelomaMD
for all you have done for myeloma pts and for advancing the science of myeloma through the comittee
Today I heard from someone who is 24 years post an autologous stem cell transplant to treat his
#myeloma
. With no maintenance and still in sCR, he is now in his mid 70s.
7) International Myeloma Foundation.
@IMFmyeloma
New CEO
@NorthTxMSG
will take the IMF to the next level to help patients. I’m looking forward to working with the IMF more in the next year.
As I celebrate 27 years living w/ myeloma, thankful for my docs who have clinical excellence, embrace shared decision making, are empathetic.
Past Community Docs: Dr. Barry Mirtsching & Dr. Patrick Travis
Past:
@ldandersonjr
Present:
@JanakiramMurali
,
@myelomaMD
#ItTakesaVillage
Grateful for +1 and being a 26-year survivor.
I always Respect the Past, strive to Understand the Present, and be Energized by the Future!
#mmsm
#cancer
#rarediseases
Yesterday, I learned of the death of my friend, Lee after living with
#myeloma
for 30 year from age 53 to 83 from 1992 to 2022 from Rx prehistoric era to the era of CAR-T. Lee was able to see all of his 3 dozen grandkids.
Congratulations
👏
@VincentRK
👏
on your appointment as Chairperson-Elect of the International Myeloma Foundation (
@IMFmyeloma
.)
I look forward to working with you and continuing to bring hope to
#myeloma
patients.
#mmsm
*PRESS RELEASE*
World-Renowned Scientist, S. Vincent Rajkumar, MD, Appointed as Chairman-Elect of the Board of Directors of the International Myeloma Foundation (IMF)
I’m happy my appointment to
the NATIONAL INSTITUTES OF HEALTH, National Cancer Institute’s NCI Council of Research Advocates has been finalized and I’m full committee member through 2023.
@NIH
@theNCI
@IMFmyeloma
We had the pleasure of spending 90 min w/ Dr. Kyle.
Did you know at 90+, he comes to the office 6 days a week?
Oh the stories he tells.
Can’t wait for his memoir to come out.
The black books on the shelf are bound papers he authored/co-authore over last 60 yrs.
@MayoMyeloma
#ASH21
#clinicaltrial
Acronyms and their Design.
Like me, if you haven't memorized the design of GRIFFIN, MAIA, CASSIOPEIA, MASTER, CARTITUDE, etc. not to worry
Below is a non-exhaustive list of designs for us
#clinicaltrial
mortals.
#mmsm
"I would like for people to think of Mayo Clinic as a nimble and creative partner, tolerant of the risks that come with innovation.”
@Rfonsi1
Read Dr Fonseca's journey as a physician and evolution of
@MayoMyeloma
Phoenix
#mmsm
So excited about my first ever poster coauthorship.
#ASH23
Cytokine Release Syndrome: The Patient, Carer, and Healthcare Professional Experience + There is value in adopting digital solutions for CRS monitoring and management.
What a sad loss to the world. Dr Mitchell
@EdithMitchellMD
was a true trailblazer, compassionate leader, friend to the medical and especially to the myeloma community and a long time member of the
@IMFmyeloma
board. She will dearly be missed.
@eaonc
@VincentRK
@mtmdphd
I was privileged to have dinner w/ Brigadier General Dr. Edith Mitchell: raised on a farm in West Tennessee, 1st female physician to attain this rank in history of U.S. Air Force, now working to help reduce disparities in access to cancer Tx. I was smart enough to shutup & listen
First case of
#COVID19
in a patient with multiple
#myeloma
successfully treated with tocilizumab | Blood Advances | American Society of Hematology
#mmsm
🙏 Dr
@rabonour1
Going the extra mile for every myeloma patient.
Many physicians go the extra mile for their patients. Few go more than 2,300. But Dr. Rafat Abonour, an Indiana University
#myeloma
researcher & IU Health physician, has done just that.
#Mmsm
I am against, the broad statement "maintenance forever" in
#myeloma
: Imagine the 16-year old that will be on treatment forever. Remember, myeloma drugs are not without side effects, they have QOL, $, and other side effects and impact on patient lives.
#MYelomaACTION
#mmsm
This weekend we (
@IMFmyeloma
) had our first board meeting under Dr Rajkumar's Chairpersonship with a focus on Research, Strategy, Patient Experience and Organizational Excellence.
👇🏽 Having a sidebar with
@VincentRK
@jmikhaelmd
As an immunocompromised patient, the third dose of Pfizer completed my
#COVID19
series of shots. (At least for now)
After 2nd shot my antibody result was 58; 4 weeks after the 3rd shot >2500.
I had the opportunity to visit
@MayoClinic
Rochester
Patient centricity starts from the door... I’ve never seen this much wheelchairs in one place. Then the brother’s philosophy of collaboration is throughout the building and process.
#mmsm
#myeloma
#cancercare
Dr Rajkumar did a great job summarizing and recognizing Dr Robert A Kyle’s lifetime achievements and contributions to the advancement of
#myeloma
treatment.
@VincentRK
@IMFmyeloma
A day in the life of a
#myeloma
pt.
6a.m. presentstion to 1st year med students about living w/mm
8 a.m. PET/CT
10 a.m work meeting
11:30 a.m BMB w/ driver
2 p.m. annual physical
2:30 p.m. flu 🤧 shot.
Emails, calls, txt, instant msg in b/n.
Living with not for myeloma
#mmsm
Honored to assume the role of Chair, Board of Directors
@IMFmyeloma
I look forward to working with
@NorthTxMSG
CEO of the organization. Yelak is an inspiration. Diagnosed with myeloma at age 25, he knows first hand what we need to do to help patients.
I am thankful for my Myeloma mentors, my extended Myeloma family,
@IMFmyeloma
vision.
I am most thankful for standing on the shoulders of my fellow Myeloma patients and advocates who came before me and chose to bravely light the way.
12/
At The International Myeloma Working Group (
#IMWG
), it's not all about scientific presentations—it's a place where laughter and networking thrive. Together, we're shaping a brighter future for myeloma patients worldwide.
#ScientificBreakthroughs
#CommunityBuilding
#mmsm
I was privileged to have dinner w/ Brigadier General Dr. Edith Mitchell: raised on a farm in West Tennessee, 1st female physician to attain this rank in history of U.S. Air Force, now working to help reduce disparities in access to cancer Tx. I was smart enough to shutup & listen
Congratulations to Doctor Rafat Abonour
@rabonour1
for being named the Harry and Edith Gladstein Professor of Cancer Research at
@IndianaUniv
; only the second person to hold the role/honor.
Thanks for all you do to advance the science of
#myeloma
#mmsm
The best thing is not to have
#myeloma
. If one has to have it, this is the best time to live with
#myeloma
.
Second immunotherapy approval in less than one week!
#mmsm
As we approach
#ASH23
, as a 28-year myeloma patient, I am grateful for all those who "come out" with their
#myeloma
diagnosis. It helps destigmatize the diagnosis and living with and not for myeloma.
#mmsm
Three months after receiving a life-changing diagnosis, Spurs broadcaster Bill Land has learned the key to living with cancer is found in the living.
And, yes, that means continuing to call the exploits of Victor Wembanyama and Co.
via
@expressnews
Lots of talk about Autologous Stem Cell Transplant becoming treatment of the past for
#myeloma
, but it still owns the SOC throne and probably will for the next decade.
#ASH21
#imfash21
#mmsm
Honored to assume the role of Chair, Board of Directors
@IMFmyeloma
I look forward to working with
@NorthTxMSG
CEO of the organization. Yelak is an inspiration. Diagnosed with myeloma at age 25, he knows first hand what we need to do to help patients.
#MYelomaACTION
Happy Birthday to Dr. Kyle. Grateful for his pioneering leadership in sxienrific untangling of early stages of
#myeloma
& launching so many careers.
👇🏽a
@MayoProceedings
write up by
@VincentRK
"Robert A. Kyle, MD: Lessons From a Legend"
CONCLUSIONS
Among adults with myeloma, RVD + ASCT was associated with longer PFS than RVD alone. No OS benefit was observed. (Funded by the National Heart, Lung, and Blood Institute and others; DETERMINATION number, NCT01208662
The
@IMFmyeloma
co-Founder, Board Chair and Chief Scientific Officer,
@BrianDurieMD
with the Cheif Medical Officer,
@jmikhaelmd
and Board Member and IMWG co-Chair
@VincentRK
at the recent IMWG2022 conference in Vienna.
"The Interconnectednes of Dietery Habits With QOL and Outcome in MM"
Dr
@UrviShahMD
thank you for presenting at the 24th Annual
@IMFmyeloma
Support Group Leaders Summit the leaders loved your presentation.
#mmsm
For the good news
#COVOD19
👇
we’ve one
#myeloma
patient that reported he was confirmed contracting
#coronavirus
and after feeling miserable and with high fever for 12 days, at day 16, he’s feeling better and is on the up side of the recovery curve.
#mmsm
.
Congratulations to
@mvmateos
for being the 2023 IMWG Robert A. Kyle Lifetime Achievement Award recipient.
The 1st woman in the award's 23-year history, Marivi is a mom, a scientist, a singer, and a compassionate doctor.
#mmsm
CC:
@BrianDurieMD
@VincentRK
As I complete my 90 days as the CEO of the
@IMFmyeloma
, I am humbled by the work the team does, and its direct impact on patients, science, and research. My message to my team and our stakeholders
#MMSM
#Myeloma
#TeamWork
#Collaboration
Today we met someone who has done TWO
#CAR
-T cell therapies. 1st one lasted a year and this second one is 6 weeks out and doing great so far. Hope to speak with her in detail tomorrow. More details to come.
#myeloma
#mmsm
*Press Release*
The International Myeloma Foundation (IMF) Honors Dr. Hervé Avet-Loiseau and Dr. Bruno Paiva—2022 Achievement Awardees at the 13th Annual IMWG Summit
For talquetamab (and similar drugs) to make a dent on myeloma outcome and not to be used as a hail mary or bridging therapy, it's advese side effects need to be mitigated.
#talquetamab
#mmsm
#QOL
So, side effects are taking a toll. I now have had my mouth dry out so bad my tongue and cheeks are cracked. I have lost a lot of weight and I know I need to eat but now I really can't. Just have to keep moving forward!!
#MMliving
#Myeloma
#Talquetamab
👏🎵💉
I will be requesting Dr. Rodriguez in room
#1
for all of my future bone marrow biopsy needs at
@cityofhope
. Equipped with a really bad Elvis' karaoke song, a sense of humor (dry), & a drill, I can say this was the least painful BMB in my 27 years of living with myeloma.
Dr Kyle is such a kind and generous soul who played a significant role flattening the cure curve personally as a brilliant scientist and mentoring dozens. So much leadership and scientific lessons we can learn from his life!
My parents have celebrated their 55 wedding anniversary.
I’ve outlived my Dad who passed at 84. The only time I saw my father cry was when I told him I had cancer.
Mom continues to go strong and pray for me.
Grandma continues to bless me from heaven having died at 94.
10/
𝗜 𝗸𝗻𝗼𝘄 𝗜’𝗺 𝗹𝘂𝗰𝗸𝘆 𝘁𝗼 𝗰𝗼𝗻𝘁𝗶𝗻𝘂𝗲 𝘁𝗼 𝗱𝗼 𝘄𝗲𝗹𝗹 and live with and not for myeloma.
I am thankful to my 𝘧𝘢𝘮𝘪𝘭𝘺, friends, novel treatments that came along, my exceptional doctors & nurses who cared/care for me.
11/
"Hope at every stage!"
"In the old days - that's last year for myeloma -..."
"17 new drugs approved for myeloma in 20 years - that's like 1 drug every year!"
Dr
@MunshiNc
acknowledging the neck breaking advancement in
#myeloma
& the need to not let foot off the pedal.
“There’s all this talk that CAR Ts are going to replace autologous transplant. This data is telling – we’re
nowhere near the point where even modest access is going to be available,” Dr. Patriv Hagen of Loyola Med said.
thanks for making this happen and all you do to sustain these groups!
#mmsm
#knowledgeispowerOur
Q1 Support Group Leaders Quarterly Call had almost 80 who joined from across the US. Myeloma Patient Support Groups are key enablers of information sharing and support.
@IMFsupport
Dr Raje,
@NoopurRajeMD
, discussing approaches to Releapse Disease 👉🏽 "There is science in medicine and there is art in medicine." Dr Raje
Q: who do you want as your myeloma journey's artist?
#mmsm
How should patients frame questions to their doctor? Either at relapse or at least once or twice a year, patients need to initiate "What next?" questions with their doctor. I also think physicians need to initiate this conversation occasionally.
#cancer
#myeloma
#mmsm
Today we heard the passing of John Auerbacher, a long term
#myeloma
patient, 14 years, support group leader, patient advocate, our
@ASH_hematology
meeting compadre. Will miss his wit, laugh, dedication...
@IMFsupport
"In treating myeloma, we shouldn't put the cart before the horse, but we SHOULD put the CAR-T before the horse (transplant?)." DR
@TomBmt133
advocating for early CAR-T
#mmsm
#IMWG2022
❤️