Top Tweets for #hlrcc
HLRCC fibroids are easy to miss. A new review found they start around age 32 and are usually multiple, yet under 1% of patients had FH genetic testing before their gynecologic diagnosis. Fibroids at a young age? Ask about genetic testing. https://t.co/3DExtynSsM #HLRCC
Could kidney cancer run in your family? Join @kidneycan's Genetics Town Hall, Wed Oct 28, 5:30 PM ET, with Dr. Brian Shuch (@KidneyCancerDoc), Dr. David Braun and genetic counselor Lindsey Byrne. A must for HLRCC families. Register: https://t.co/hWvoAdotbH #HLRCC #KidneyCancer
@ShuchiGulati giving a masterclass on imaging in #kidneycancer @ASCO #GU26. Appreciate the inclusion of hereditary RCCs especially #HLRCC!
🧡 Todd's complicated #HLRCC #kidneycancer diagnosis left Nicole's young family reeling. She shares her family's story and how it's fueled her advocacy for increased research funding.
"It is the most isolating experience but I promise, I see you."
🔗 https://t.co/lQUTKbZKUG
@OncBrothers @CathyEngMD @NCCN @ThanksCancer @BijoyTelivala @drsarahsam @dr_yakupergun @DrYukselUrun @realbowtiedoc @RenoHemonc @cdanicas @FunchainMD Shouting this from the rooftops!! Wish I’d been diagnosed with #HLRCC before it presented as stage IV kidney cancer. I talk often w/ early onset RCC patients who haven’t received germline testing. This needs to be discussed so patients at least know they have the option!
遺伝性平滑筋腫症・腎細胞がん症候群（#HLRCC）関連もしくは孤発性の #乳頭状腎細胞がん に対する #アバスチン＋#タルセバ 併用療法の有効性、安全性を比較検証した第2相試験（#NCT01130519）の結果が医学誌『The New England Journal of Medicine』にて公表されました。
https://t.co/JupmMPnNfk
Love seeing this important study out in @NEJM - and blending friends and colleagues from both @theNCI and @OSUCCC_James - and critical treatment information showing effect of bev + erlotinib in #HLRCC and sporadic papillary kidney tumors. #RareTumors #CancerScience ♥️👇♥️
Proud to be part of this pivotal trial and to have learned so much from Dr. Srinivasan and our patients. @theNCI @OSUCCC_James @OSU_Urology @KimrynRathmell @KidneyCancer @kidneycan @IKCCorg @KidneyCancer_Ca
📢 Big win for a rare kidney cancer subtype!
In HLRCC-associated papillary RCC, bevacizumab + erlotinib delivered a 72% response rate and median PFS of 21.1 months.
🧬 Germline FH-mutated pRCC finally gets a targeted shot.
#Oncology #RCC #HLRCC #KidneyCancer #PrecisionMedicine @NEJM @kidneycan @IKCCorg @KidneyCancer @eric_facs @OncoAlert @OncBrothers @medicalwatchBC
https://t.co/SacMGfXN5h
@ilyassahinMD @NEJM I guess FH-deficient hereditary RCC (#HLRCC-associated) are very different from "sporadic" papillary RCC, a category that ecompasses a variety of histologies. Important to consider the results in the two groups separately.
excellent news for patients with #HLRCC & #pRCC on #worldkidneycancerday
huge congrats to the investigators and patients @theNCI @sramapra166 @markballmd @MarstonLinehan
In papillary kidney cancer, particularly hereditary leiomyomatosis–associated cases, bevacizumab plus erlotinib showed strong antitumor activity. The likelihood of a response was higher in hereditary cases than in sporadic ones. Full study results: https://t.co/wuTUmtq1XN
It was an honor to be a part of this incredible symposium for #HLRCC. Thank you to @HLRCCFoundation @DeanElhagMD & all who were involved to make this much needed conversation a reality! #FHdeficiency #kidneycancer #rarekidneycancers
Our first HLRCC Symposium is in the books and we are excited to share an online version for those interested in learning more about the condition. Special thank you to all those who contributed @FrezzaLab @MuellerRom @LauraEsfeller @MarstonLinehan https://t.co/BzkQEQTCkX
Scan Update: tl;dr everything is (probably) fine. Adjusting my chest CT schedule to be safe. Really grateful to have @KidneyCancerDoc looking out for me & entertaining my need to talk thru worst case scenarios. #HLRCC & long term met survivorship is complex. Still lucky. 🧡 #RCC
sharing my experience as a #cancersurvivor & #patientadvocate just steps away from a place where I was definitely not listened to hit me hard today. Special thanks to @HLRCCFoundation @EuRefNetwork @IKCCorg & ERA for the opportunity. I’m so hopeful we’ll find answers for #HLRCC!
In all fairness, my PCP had never seen an #HLRCC patient before & likely never will again. But I talked this AM about how I was in that very building on my diagnosis day after 2-3 years of symptoms being misdiagnosed & still had to go to the ER that night to finally be scanned
Congrats @LauraEsfeller on detailing the #HLRCC journey and how to move the field forward! Fantastic addition to today’s first HLRCC Symposium. Register: https://t.co/aB6wiFcVL0 #kidneycancer #rarecancer #raredisease #worldkidneycancerday @HLRCCFoundation @ERAkidney @EuRefNetwork
And you can register for the upcoming #HLRCC Symposium 2024 on June 20 from 12-2 pm EST, hosted by our Affiliate Partner @HLRCCFoundation with @ERAkidney @EuRefNetwork. Register free for this virtual webinar: https://t.co/aB6wiFcVL0
#rarecancer #worldkidneycancerday
Our Affiliate Partner @HLRCCFoundation with @ERAkidney @EuRefNetwork are conducting a survey to estimate the # of #HLRCC patients and treatment centers. Learn more and take the brief survey here: https://t.co/nSlzpWgdrr
This time 8 years ago, I was @UCLAHealth in surgery fighting for my life. My radical nephrectomy was 5.5 hours long while they removed my right kidney, adrenal gland, most of my IVC & 7 lymph nodes. Last week, I was at #ASCO24. Life is good & we’re stronger than we think. #HLRCC
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