Whether to have positive smile or not with cancer.. what it predicts about you

Hi everyone, l am here to know whether it’s anything wrong with in me or in receptor eyes. I have to challenge my last stage cancer in so many ways day to day. When I appear publicly l always welcome my cancer with a smile since more than six year. I never allowed cancer to carry on me. The reaction most commonly l have from the people in India is “you are not looks like a cancer patient or to my family members Is it true that she has cancer of last stage” oh gosh!! it reminds me all the bad time l had gone through and my family offcourse. Is there any particular tag or tattoo we can bear always with us to show sympathy with cancer😀

Want reaction of all my cancer fellow or who had successfully defeat this demon.

Kusum

Letter To Fear

What a thoughtful blog can relate to toughest cancer in us who tried but not able to break us..
Kusum

*UNBREAKABLE QUEEN'S LIFE LESSONS DIARY*

Sometimes the past haunts me to the point my reality seems unbearable and very unclear. Your goal is to make me curl up into a ball and not want to come out ever again. Which for years you can very much say I was that girl who hide away from the world ignoring the realization that even though my fear is temporarily put away, the world doesn’t stop spinning and will eventually pass me right on by.

Fragile is a word I use when things are going haywire in my life because despite how insane it can be, I refuse to break! Let me repeat fear that I REFUSE TO BREAK! I was taught that wanting a mountain to move doesn’t make it but telling one to move, now that’s another story. The reason behind me writing you fear is to let you know that I may be down…

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Kusum’s 6th Cancerversary at Stage 4 Lung Cancer with Brain

Finally, the most awaited day of year came..our brave girl Kusum Malik Tomar has achieved the milestone of 6th Cancerversary ✌️✌️(6 year of survival since diagnosis at Stage 4 with her rare type of ALK Lung cancer metastatic to Brain ….if I include wrong diagnosis & treatment, it is 7 years).

6 months given to live to achieve 6 year milestone…wow, a journey which we were never thought to achieve this long 

It could not have been possible without soulful wishes of family and friends….our heartfelt thanks to each one of you 🙏

Kusum Malik Tomar – I am so lucky that you are my love – a girl who never loose #Hope and keep fighting with this dreadful disease, death and pain with tremendous #Courage 

#Cancerversary #Celebrations #LosingIsNotAnOption #RiseToSurviveCancer

 

Yipeeeee :-),

Vivek

ALK Positive India – India’s 1st Patient Support Group dedicated to Lung Cancer Advocacy & also 1st mutation level Patient Support Group in Cancer in India

Back in 2015, Kusum and I became a member of a global group of ALK positive Lung Cancer Patients & Caregivers,  that group was first of its kind in world i.e. a mutation level patient support group.  The group uphold these by providing Worldwide Information about ALK lung cancer to each other. The group members (ALK+ve patients and caregivers) support one another around the globe (currently members are from 41 countries). The three tenets group members live by are Information, Support, and Empathy, no matter where one may be.

That global group changed our life. It helped us to became educated, empowered to have right discussion with Doctors, select right treatment and become advocate of ourself and for others. As all are patients & caregiver this type of Lung cancer so all discussions are 100% relevant….. You think if 500 patients are taking a specific medicine and share the experience with a new joiner, if some one is in a clinical trial of a new medicine & share experience or if some one meeting top oncologist/ expert of world & share experience….how much it could help a new patient & family. And then our global started to become Lung Cancer advocate, who are working globally to change future of Lung Cancer. Would you believe collection that our global group has collected $539,000 in a year to sponsor the research projects (being assigned to best researches of world, with support of Lungevity) to improve the quality of life and life expectancy for ALK-positive patients

However, in India, we realize that in addition to above there are some critical local/ country level needs which needs to be addressed locally. For ex.:

  1. ‘Timely and Affordable Access to Latest Treatments for ALK+ve NSCLC patients in India” – This is so critical as life are at stake here and without medicine, how we could be able to save Cancer patients in India. As of today, in many countries, for ALK+ve patients, there are so many treatment options (including targeted therapies) are available via approval or clinical trials (approx 24 trials going on) however in India, we are no where (not a single trial ongoing for ALK +ve patients in India);
  2. “Better Access to Clinical Research & Research Medicines for Cancer patients including ALK +ve in India’;
  3. “Better and affordable mutation/ sub-mutation testing facility”;
  4. “Collaboration with Doctors and Hospitals for better support and treatment”,
  5. “Raising Awareness about Lung Cancer & ALK +ve”
  6. “To identify more patients of this rare type of Cancer in India and connect them to global group”
  7. To have a updated, validated list ready for NSCLC ALK +ve patients in India, that would not help to support each other but also help Government and Pharmaceutical companies to understand NSCLC ALK+ve disease burden and need of all those latest treatment available in other countries (as delay only cost someone life here in India).

Therefore, we have actively started to work on these needs in India while meeting with patients, doctors, industry, policy makers, hospitals and media. Today, I am member of global group outreach management team and National Coordinator for India to start ALK Positive India, a first group of its kind to identify, provide support and advocacy for ALK Positive Lung Cancer in India.

This concept (mutation level support group) is not only new to patients but for Doctors, Industry too in India.

However as we are sharing along with hard work of ALK Positive India team (patients & caregivers including Amit Mohile (Lead Western India), Sushila Krishnamoorthy (Lead Southern India), Chacko Varghese, Akash, Susain, Jagat S Arora, Sai Narayana, Santhosh & many others) observing positive change.

It is a long journey and we hope not to only to change future (for better) for ALK Positive Lung Cancer but also Lung Cancer in general and patient support for all type of Cancer.

Today, ALK Positive India is getting trained under NGO excellence program at one of India’s best Business school i.e. SPJIMR, Mumbai, as sponsored by Novartis.

Copy of first flyer (as kindly sponsored by an ALK patient & great friend ‘Chacko Varghese’) for ALK Positive India is presented below.

All photos in flyer are of ALK Positive Lung Cancer patients or their caregivers from India and abroad.

If you know anyone with ALK Positive Lung Cancer, please share the details of ALK positive global & India group, as provided in this flyer.

#Hope #RiseToSurviveCancer #LosingIsNotAnOption #ALKPositive #LungCancer #India #PatientSupportGroup #LatestTreatment #ClinicalResearch

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Thanks,

Vivek Tomar
National Coordinator ALK Positive
Patient Advocate for Lung Cancer, Clinical Research and Timely Access to Latest Treatment

Got IASLC Patient Advocacy award 2018 #LungCancer #LCSM

I am so pleased to share that I have been awarded with prestigious international “Patient Advocacy Award for 2018” by esteemed “International Association for the Study of Lung Cancer (IASLC)” 🙂, considering my advocacy work for Lung Cancer and service to thousands of Cancer patients & families in India………The award would be presented at “World Conference of Lung Cancer” (#WCLC2018) in Toronto, Canada later this month/ September 2018. As big part of this award, I would have access to world conference and trip sponsorship 🙂

I am felling humbled and proud at same time, as going to represent our country #India and its Lung Cancer Patients and families at World Conference of Lung Cancer in Canada.

#IASLC #WCLC2018 is such a great opportunity to meet & learn from worlds best Doctors, Researchers and Patient Advocates and I really hoping and wishing that I would be able to do more and better work to save & serve more and more cancer patients to live longer & quality life with their family & friends in #India.

I would indeed need your support to fulfill this uphill task to change Cancer patients situation in India.

And most importantly, I am out of words on how to express my thanks to my love Kusum Malik Tomar and Suryansh for exceptional support & understanding as all time going in this work, is only possible after deduction from their time/ family time #LoveToMoonAndBack

#WCLC2018 #Hope #LCSM 

 

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