India 1st Oncogene focused Patient Support Group for ALK+ve Lung Cancer Patients better Support, Care and Access to Latest Treatment & Research @R2SurviveCancer
India
Joined August 2018
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Are u/loved one diagnosed with #ALKPositive #LungCancer in #India? Join our 🇮🇳 ALK+ve Lung Cancer #patients & #caregivers community. Email '[email protected]' with WhatsApp, name, city & proof of ALK+ve status to join.
You’re not alone💙
@R2SurviveCancer @urvashi01
ALK Positive India retweeted
India has 5.7% of the global lung cancer burden - but accounts for only 1.41% of global lung cancer clinical trials.
At @IASLC #WCLC26, @urvashi01 & I represented @IndiaAlk to put this gap on the global stage.
More research. More access. More lives saved. 🇮🇳
#LungCancer #ClinicalTrials #CancerResearch #PatientAdvocacy
Our ALK Positive India (support gp for ALK+ NSCLC patients) Founder-President, Vivek Tomar @R2SurviveCancer, & Executive Director, Urvashi Prasad @urvashi01, will both be at #WCLC26 to present, speak & advocate for better lung cancer care, pts advocacy, science & research!
One voice can start a conversation. A collective voice can change what comes next.
From India and LMICs, bringing the patient perspective to the World Conference on Lung Cancer 2026 in Seoul - speaking, presenting research, and contributing to the global conversation on lung cancer, alongside 7,000+ delegates from 100+ countries.
For patients. For access. For research. For change.
Together, let’s make sure no one fights alone.
#AccessInequities #LungCancerCare #LCSM #PatientAdvocacy #ResearchSavesLives #WCLC26
@IASLC @JFreemanDaily @campaign4cancer @jillfeldman4 @cspramesh @Prabhatmalikmd @VanitaNoronha @docrohatgi @SewantiLimaye @ns_chd @oncodaily
A harsh truth of life for cancer patients, especially the young ones.
In 2017, during her Stage IV cancer journey, Kusum spoke about what life was teaching her.
Pain. Struggle. Love. Courage. Hope. Life.
A decade later, her words still remind me of the lessons life can teach us - sometimes through the people we love, sometimes through the journeys we never expected.
#HappyTeachersDay
ALK Positive India retweeted
Advancing research. Supporting innovation. Improving outcomes.
The ALK+ NSCLC Inspirational Research Grant is an opportunity for researchers to develop impactful projects that address important questions in ALK-positive lung cancer.
Proudly supported by TOGA and ALK Positive
ALK Positive India retweeted
Managing lorlatinib together: An overview and practical guide for patients by ALK-positive NSCLC patients and medical experts - Lung Cancer lungcancerjournal.info/artic…
ALK Positive India retweeted
👀 "Thinking about these toxicities is a very different scenario than thinking about most other toxicities, because they can be so acutely harmful depending on the circumstances," said David Gerber, MD, of @UTSWMedCenter on neurocognitive tradeoffs of later-generation ALK TKIs in NSCLC.
Watch here ➡️: onclive.com/view/dr-gerber-o…
#lcsm #oncology
Some promises take years to fulfil.
Some become part of a legacy. ❤️
ALK Positive India NSCLC Patient Support Group co-founder Dr Vivek Tomar shares his journey of keeping a promise made to his late wife & fellow co-founder, Kusum.
Read his story 👇
Fourteen years ago, Kusum dreamed of visiting Ladakh.
Lung cancer took that dream away.
Seven years after losing her, and after fulfilling another promise I had made to her - to raise our son as a single father and see him graduate from Class 12 with flying colours - I finally took her to Ladakh.
It wasn't goodbye.
It was a promise kept.
Love completed the journey that cancer could not. ❤️
#LoveBeyondLife #Ladakh #LungCancerAwareness #EveryBreathMatters
If you want to know more about this journey, read at my blog, link shared in this tweet thread.
@TheWRP4LC @cspramesh @IASLC @urvashi01 @AnantBhan @IndiaAlk @ALKPositiveinc @jillfeldman4 @LUNGevity @LungConnectIN @Vandana66218307 @VanitaNoronha @docrohatgi @SewantiLimaye @ns_chd @Amolpatel_dr @ASCO @OncoAlert @oncodaily @EGFRResisters @ajumathew_ @heidi_onda @acmoorephd @ros1cancer @oceanblue11oct @StopCancerDoc @NarjustFlorezMD @ProjectBreath @boldcaleb @Sanjeev_33 @ThePksinha @campaign4cancer @JFreemanDaily @StephenVLiu
To mark #WorldLungCancerDay, India ALK Positive Lung Cancer Patients & Caregivers Support Group (@IndiaAlk) co-founder Dr. Vivek Tomar completed a motorbike expedition to the world's highest motorable road, raising #LungCancerAwareness every mile of the journey💙
Some journeys are measured in kilometres. Others are measured in the lives they hope to change.
To mark #WorldLungCancerDay and in memory of my beloved wife Kusum, who lost her life to lung cancer - though she had no history of smoking - I carried the White Ribbon for #LungCancerAwareness to the world's highest motorable road.
Not to celebrate an altitude - but to remind us that:
🎗️ Anyone with lungs can get lung cancer.
🎗️ Early diagnosis saves lives.
🎗️ Every patient deserves timely & affordable access to the latest evidence based treatement.
🎗️ Research saves lives.
#LosingIsNotAnOption🚫 #PatientAdvocacy #EveryBreathMatters🫁 #RideForACause❤️ #EarlyDetectionSavesLives🎀 #lcsm #RiseToSurviveCancer
@TheWRP4LC @cspramesh @IASLC @urvashi01 @AnantBhan @IndiaAlk @ALKPositiveinc @PMOIndia @jillfeldman4 @LUNGevity @LungConnectIN @Vandana66218307 @VanitaNoronha @docrohatgi @SewantiLimaye @ns_chd @Amolpatel_dr @ASCO @OncoAlert @oncodaily @EGFRResisters @ajumathew_ @heidi_onda @acmoorephd @ros1cancer @oceanblue11oct @StopCancerDoc @SumiSukanya @NarjustFlorezMD @ProjectBreath @boldcaleb @Sanjeev_33 @ThePksinha @campaign4cancer @JFreemanDaily @StephenVLiu @MoHFW_INDIA
ALK Positive India retweeted
Birmingham is a founding Russell Group university. And I received it as a Stage 4 cancer patient who, by the statistics, shouldn't still be working. It's tempting to read this as a survival story. It isn't. Survival is not an achievement - it's biology, luck, and access. Most young adults with my diagnosis never get the access I did. @DrSanjayPopat @YoungLungCancer @OncogeneCancer @Yvonne_Diaz_ @IndiaAlk @LungConnectIN @LUNGevity
Happy Heavenly Birthday to Kusum 🎂✨, co-founder of our ALK Positive India support group. Your vision & dedication continue to inspire hope and support for ALK+ NSCLC patients and caregivers. Forever remembered. ❤️🙏
Today would have been Kusum's birthday.
I marked the day with a run at iconic India Gate to raise awareness for Lung Cancer & Research - and later spent time at an orphanage for children with physical and mental disabilities.
A birthday remembered not through sadness, but through purpose.
Cancer took away years we hoped to share.
It did not take away her impact.
Happy Birthday, Kusum 💛🎂🎗️
#LungCancer #PatientAdvocacy #ResearchSavesLives #HappyBirthday
ALK Positive India retweeted
A patient needs a life-saving medicine.
The licence to import it in India for personal use is FREE.
Yet many families end up paying agents and losing valuable time to get medicines even during widely used patient assitance program, simply because they don't know the process.
To help patients and caregivers, I created a free step-by-step tutorial explaining how to obtain the import licence yourself.
Considering the number of queries I continue to receive, this remains a challenge for many patients and families. Unfortunately, some are still being charged unnecessary fees for a process that is free.
Hence, sharing this resource again.
Link in comments below 👇
⚠️ Note: The tutorial reflects the process currently followed to obtain an import licence for personal use. As with any regulatory process, requirements may evolve over time, so please verify the latest guidance from the relevant authorities when applying.
#ImportLicense #PatientsAssitance #PatientAdvocacy
#AccessToMedicines
ALK Positive India retweeted
Live from ASCO: ALKtALK with Dr. Christine Lovly
Get real-time updates from the ASCO Annual Meeting and what they mean for the ALK+ community—straight from a leading researcher and advocate.
📅 May 31, 2026
🕖 7 PM ET
📍 Zoom (broadcast live from ASCO)
ALK Positive India retweeted
the 55% progression-free at 7 years is real and it's a big deal in lung cancer.
worth keeping straight though: CROWN is ALK-positive NSCLC only. that's about 4% of lung cancer, selected on one specific gene rearrangement.
and the comparator was crizotinib, which is itself a targeted ALK drug, not chemo. so this is a newer targeted drug beating an older targeted drug in a biomarker-picked group.
lorlatinib works this well because the patients were selected for the exact thing it blocks. that's the precision-medicine bet paying off, not a result that carries over to metastatic solid tumors in general.
Very important study and data - Young, Never-smokers and Lung Cancer
Important data on young-onset #NSCLC from #ASCO26 👀🫁
Patients <50 years were:
🔹 More likely never-smokers
🔹 More likely metastatic at diagnosis (~70%)
🔹 Enriched for actionable drivers — especially ALK & EGFR
🔹 Had longer OS despite advanced presentation
Strong reminder to maintain suspicion for lung cancer in younger patients and prioritize comprehensive molecular testing. Congrats to @TejaVoruganti a fantastic fellow and team 👏 #LungCancer #NSCLC #ThoracicOncology @EGFRResisters @YoungLungCancer @ASCOTECAG
ALK Positive India retweeted
Important data on young-onset #NSCLC from #ASCO26 👀🫁
Patients <50 years were:
🔹 More likely never-smokers
🔹 More likely metastatic at diagnosis (~70%)
🔹 Enriched for actionable drivers — especially ALK & EGFR
🔹 Had longer OS despite advanced presentation
Strong reminder to maintain suspicion for lung cancer in younger patients and prioritize comprehensive molecular testing. Congrats to @TejaVoruganti a fantastic fellow and team 👏 #LungCancer #NSCLC #ThoracicOncology @EGFRResisters @YoungLungCancer @ASCOTECAG
ALK Positive India retweeted
#ASCO26 | Wait or Treat? Brain RT in EGFR/ALK+ NSCLC
Presented by Dr Anil Ramakant Tibdewal.
A landmark Phase III randomized trial from @TataMemorial addressed a long-standing question: should asymptomatic brain metastases in oncogene-driven NSCLC receive upfront cranial RT or can radiation safely be deferred?
🧠 Upfront RT significantly improved intracranial control:
▪️ 2-year intracranial progression: 21.7% vs 50.1%
▪️ HR 0.35, p<0.001
@Jani_Chinmay
ALK Positive India retweeted
Excellent presentation by LUNGevity SAB member @JessicaJLinMD opening a new door for ALK+ trx.
Neladalkib is an investigational ALK inhibitor designed to overcome resistance while maintaining brain activity.
Early ALKOVE-1 results show meaningful responses even in heavily pretreated patients, including those with prior lorlatinib and CNS disease, with encouraging activity also seen in treatment-naïve patients.
One to watch in the next wave of ALK-targeted therapy.
#NSCLC #ALKpositive #lungcancer #ASCO26 @MassGeneralNews
ALK Positive India retweeted
ALKOVE-1 suggests the ALK story may not end after lorlatinib.
• G1202R ORR: 68%
• CNS activity preserved
• Post-lorlatinib ORR: 26%
Resistance biology may still be targetable.
#ASCO2026 #ALK #NSCLC #ThoracicOncology #MVOnco
ALK Positive India retweeted
🚀 7-year follow-up from the CROWN study continues to redefine expectations for ALK+ NSCLC.
Key updates presented by @TonyMok9 at #ASCO26:
🔹 Lorlatinib achieved a 7-year PFS of 55%, with median PFS now exceeding 7 years (HR 0.19 vs crizotinib).
🧠 CNS control remains remarkable:
• 7-year intracranial progression-free rate of 92%
• No new intracranial progression events observed after ~30 months
@Jani_Chinmay
