Happy Birthday Kusum

Today is the day when a flower bloomed on this earth who in her very short span of time spread fragrance wherever she went and that still persists in the air, in the minds and hearts of those lives she touched….Happy Birthday dear Vibha…May this message reaches you in whatever realm you are currently residing in. We all on this earth miss you very much

Dear Kusum aka our Vibha,

Hey birthday girl….I am sure whereever you are, there will be only love, happiness and today even lot more fun and laughs 🙂 …..Lucky they!!

Though missing badly all those laughs and you….but we are not much behind here on earth….We are celebrating your bday, in same way, as you used to celebrate every year

Day start with, to went to ‘Deepashram’ home for underprevilaged special needs kids…and spent hours there in morning with those kids and had great fun while celebrating your bday…I am sure you were there, watching and smiling.

Then Suryansh (Avi), Mummy, Papa and I had Hawan (Prayer). Avi sit on the place where you used to sit.

Avi and I now are planning to have some family time celebration….though only issue is…. Avi was saying this morning that we can not plan surprise for you (as he & I both used to do everyyear)…I aksed why and he said Mumma is now everywhere & can see us what we are planning 🤣 HAHAHA….Your Avi is amazing, Vibhu!!

Above message with which I have started this blog was sent by Vinita bhabhi…and that message is gist of everyones feeling 💕……. Getting hundreds of messages and wishes on your birthday, filled with lots of love for you….I will read it to you later 🙂

I am going now…Avi is ready to go to market to buy stuff for bday party….. Happy Birthday Jaan…Love you always ❤️ ❤️ ❤️ ❤️

Vivek

 

 

International Clinical Trials Day

On 20th May 2020, last week, it was “International ClinicalTrials Day”. As our Kusum aka Vibha was passionate Patient Advocate for Clinical Trials and Research, every year, this day, Kusum and I used to be very busy with awareness programs, interviews, conferences, meetings and so on.

But this year was different, very different as she was not with us physically. Since morning, I was thinking of her and all those action pack days…..However when I open the social media, I was so plesantly surpsied to see hundreds of message (including on twitter, linkedin, whatsapp) from every stream i.e. be it industry, patients, clinicians, remembring Kusum and thanking her on Clinical trials day for her contribution 🙂

Thanks so much everyone who post & send those messages and remembered Kusum on this special day 🙏
Thanks Kusum
I also would like to wholeheatedly thanks Clinical Trial Patients, Researchers, Clinicians, Patient Advocates and everyone who got directly or indirectly involved in clinical research and to bring all those latest life saving treatments..like today where whole world is waiting for Covid19 treatment.

I wish for better focus & access of Clinical Trials in India & globally, to ensure latest treatmet timely avaiable for Cancer patients.

Kusum & my dear friend Linnea stories to vouch that #Clinical Trials & #Research Saves Lives!!

Clinical Trials - Ray of Hope

Ecosystem for R&D, Innovation & Start-Up in India

I was invited by FICCI (Federation of Indian Chambers of Commerce & Industry) and Government of India, to become panelist and speaker at “India Pharma 2020 summit in Gandhinagar, Gujarat for an extremely important topic for cancer patients i.e.  “Ecosystem for R&D, Innovation & Start-Up in India

It was an important and unique opportunity as:
– Patients in India has no voice and at such platforms with key stakeholders, patients & their voice are nowhere.
– Esteemed fellow panelist from Government (including India and US (Dr Patrick Kilbride, Sr VP, US chamber of commerce)), senior leaders of Industry (including from Pfizer, Novartis, Cadila etc.) & Academic Researchers (including Director NIPER).

Therefore, I tried my best and ensured to share #Patients Voice to:

> make better eco-system & access to #Research in India.

> make patients as #partner with Govt, Industry, Academics & Clinicians in the system.

Hope they heard patients’ point, loud and clear…and we will see more research in India…Finger crossed!!

 

#Research Save Lives
#KusumVsCancer
#Rise To Survive Cancer
#Losing Is Not An Option

Panel 1Panel 2Panel 3

Reaction of Kusum after taking 1st dose of Research Medicine in Clinical Trial

As you know, my wife & life, Kusum Malik Tomar who was given only 6 months to live, lived 7 years with her stage 4 cancer (was longest survivor of her type of cancer in India) and it was become possible because of research only and those 6 clinical trials/ research medicine.

There is lot of misunderstanding in India about clinical trails. Clinical trials can provide access to new treatmnet and Research medicines, which is life saving in cases like Cancer where time and access to latest treatment is key…….

Therefore, for advocacy and to help patients & family understand about importance of research and clinilca trials, would like to share this link (https://youtu.be/GkhQ4N8WHmA) of 22  seconds video clip of Kusum where she is sharing her experience after taking first dose of research medicine under clinical trial.

# Research Saves Life

# Losing Is Not An Option

# Rise To Survive Cancer

Happy Valentine’s Day 2020

Love is not just about possessions, physical presence or living together; it’s about liberation, creating memories and impacting lives around us. 💕

Today is Valentine’s Day and wishing all the lovely couples out there to create best of memories and cherish love (the most beautiful feeling created by the Almighty) with your loved one 💐🙏 ❤️

On Valentine’s day, social entrepreneur and author of book ‘God Is Not Fair?’ did this podcast (Love, Kal Aaj aur kal) on Kusum and mine love story. Link to listen ths podcast 👇 (Language: Hindi; Duration: 14:35 mins;  also available on Google podcast, Apple podcast, Jio Saavn podcast)

#ValentineDay
#Love
#KusumVsCancer
#GodIsNotFair?

 

Tutorial on how to get Import license for life saving medicines like in cancer, at no cost and on same day

Sad to see gangs cheating patients for thousands of Rupees to obtain Import License of life saving medicines/compassionate program 😞 though India drug regulatory authority CDSCO process is free of cost, online & take mins only.

I have created and published a step-by-step video tutorial on how to get Import License for Life Saving medicines in India, free of cost & possibly on same day. This video tutorial is available on youtube at link👇

https://youtu.be/8qyivWSeMYg

Hope it wll help Cancer & other disease patients like rare disease to save their money & time.

Please do share this tutorial within patients & medical community, to help as much patients as possible🙏

#KusumVsCancer

#LosingIsNotAnOption

#SharingHope

Import license

Kusum & our story is now part of an inspiring book!!

Kusum and our story of fighting with Cancer, shaking India healthcare system, becoming longest survivor in India at Stage 4 for her type of cancer, mental health & saving thousands of patients life is now part of an inspiring book “God Is Not Fair?“.

The book is written by social entrepreneur & wonderful human being Vivek Kumar ……This book is compilation of one of most inspiring 6 life transforming real life stories from India including of Kargil war veteran & India’s first blade runner Major D P Singh , Gauri Sawant – Indian Transgender Activist , survivor & fire safety activist Maneesha Ramakrishnan, Cancer Awakens #PrafullaAgnihotri and author Vivek Sharma, who once himself attempted suicide after painfully loosing his young son but now tirelessly working for prevention of suicide amongst youth.

It is an honor to feature along with such an motivating personalities & stories.

Please note that the proceeds of the book will go to the foundation to support ongoing activities and scale the “prevention of suicide amongst youth” cause.

The book is available on all major leading book stores in India and also on Amazon India at link: https://www.amazon.in/…/…/ref=cm_sw_r_wa_apa_i_c9bfEbCCDZHKQ

#KusumVsCancer

#godisnotfair

#SharingHope

“#KusumVsCancer – Celebration of Life” from 9-Jan-2020 to 9-Feb-2020

It will be one year on 5th Feb 2020, since my love, my wife, my life, Kusum left this world. Kusum who did not succumb to Cancer and not only survived but lived the life, a legendary life……Such life needs celebration “Celebration of Life”.

Therefore, from 9-Jan-2020 (today) to 9-Feb-2020, in memory and honor of Kusum, we are starting with “#KusumVsCancer – Celebration of Life” while sharing her journey, memories, work and also raising awareness of Cancer, Research, Patient Advocacy, Hope, Love.

“#KusumVsCancer – Celebration of Life” from 9-Jan-2020 to 9-Feb-2020

“Tribute Ceremony” on 9-Feb-2020

Kusum aka Vibha aka KusumVsCancer:

  • age 27, never smoker, mother of 3 yr old
  • diagnosed with stage 4 Lung Cancer (in both Lungs) with cancer in Brain (32 mets), Bones, Spinal Cord, Ovaries, Adnexa, Abdomen
  • no medicine ever gave more than 30% response/ reduction in her cancer…was never became cancer free during the treatment
  • given 6 months to live, but celebrated 6 Cancerversary (7 year survival)
  • was longest survivor at Stage 4 in India for her rare type of Cancer
  • participated in 5 clinical trials/ research medicines
  • 1st patient from India to participate in two latest research treatment
  • led with me, to bring many latest treatment in India & saved hundreds of Indian patients life
  • co-founded with me, India’s 1st oncogene focused lung cancer patients support group

In love and memory of Kusum,

Vivek

#KusumVsCancer

Run for Lung Cancer Awareness Month

Today we father-son duo run in Manesar half-marathon to bring India’s attention to “Lung Cancer Awareness Month“…Yes, November is Lung Cancer Awareness Month!!

Please note:

– Majority of new lung cancer cases are “non-smokers

India urgently need Access to Research & latest Treatment for Lung Cancer, to help survive the patients & our loved ones, as Lung Cancer is leading cause of death globally and India….

In memory & honor of our loving and the legendary “Kusum Malik Tomar”,

#LCAM

Suryansh Tomar & Vivek Tomar

Lucky me!!

Hey Kusum aka my Vibhu, my Pari….Yaar, today is our 12th Marriage Anniversary!! Happy Mariage Anniversary my life, my love….but Pari, this is not fair that you are not celebrating with me (though I know you are celebrating at God’s home)…..The issue is, missing you here soooooooo much….!!

Today, I am literally out of words and can’t express my feelings in words….however wish to clarify one thing that as you may know, when you left this physical world after fighting so long with cruel Cancer…..people have started to say me as ‘unlucky’…..Please note I am still the luckiest person in world (I felt it strongly)…..yes, still!!!  And you know why – Because, despite Cancer & struggle, I had one the most beautiful and incredible journey with you….Because, you allowed me to become your husband….Because, I got became part of a legendry fight of yours with stage 4 Lung cancer metastatic to brain, bones, who also helped to save so many other cancer patients lives…..Because, we had cherished love & only love, even with every moment of pain and struggle…..Because you & your life was and is remain source of inspiration, strength, love and hope for me and thousands & hundreds of people globally.

So please don’t be sad and enjoy our anniversary there….And if God can hear our love and our pain, plz tell him I am begging him for allow you to come back “Wapas aaja yaar…………..”

#Love #KusumVsCancer

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