This interview was taken by Zee News to understand Kusum’s view & message on Clinical Trials and its impact on her Cancer & life.
This is our first blog. So this blog is to introduce us, to share what we are planning to do through this blogsite and what you could expect/ found on this blogsite.
This blogsite is started by a Stage IV Cancer patient (Kusum Malik Tomar) and her caregiver (Vivek Tomar). Kusum is Stage IV Lung Cancer patient metastatic to Brain, adnexa ovaries, uterine bladder. Kusum has rare type of Lung Cancer which is Non-Small Cell Lung Cancer (NSCLC) with Anaplastic Lymphoma Kinase (ALK) gene mutation/rearrangement.
Kusum was diagnosed at age of 29 years, directly at Stage IV. As per data and as per Doctors, Kusum was told that she has life expectancy of 6 months to 12 months. However Kusum did not bow down to Cancer and fought with every odd to become one of the longest surviving Cancer patient for this type of rare Cancer in India at Stage IV, as she has celebrated her 5th Cancerversary (5 year of cancer survival after diagnosis at Stage IV) in September 2017.
As we have experienced and as we strongly believe that Cancer is Not an End, if Kusum can continue to Survive and Live Quality Life at Stage IV with Hope, Courage, Clinical Research and Latest Treatment….SO CAN EVERYONE.
Therefore we decided to start this blogsite to share our journey, our experiences and to do advocacy for areas, which we feel require immediate attention & work to improve Cancer patients situation, to support Quality & Long survival for Cancer patients. So that other patients don’t have to struggle to survive, as we did. And no more Cancer patients deaths due to non-availability of life saving and better latest treatments, as we have lost of many of our fellow Cancer patients.
On this blogsite, you would found following pages and information:
Home – Home page would be to share our thoughts, our experiences on how to successfully fight with this dreadful disease, our story, updates and advocacy for all those means that could help, all & one for long & healthy survival. We would also be inviting/ sharing the thoughts from inspirational personalities especially Cancer patients from India and Globally.
Clinical Research and Cancer – Recurrence and Resistance are common phenomena in Cancer and standard treatment options are limited therefore as hope for Long Healthy Survival in Cancer is timely and better access to Clinical Research. Clinical Research play key role in life saving for those scenarios where all standard treatment exhausted and clinical research is only hope. Unfortunately in India, Clinical Research is seeing as bad light due to lack of knowledge, therefore this page is to provide the right information, knowledge on patients rights, benefits & risks and policies update.
Either please click at link here to read more about updates on Clinical Research & Cancer OR if you are checking this blogsite on mobile, then click/select ‘SHOW’ option as would be appearing on Top Left side of your mobile screen/ this page.
ALK POSITIVE India – We are currently active member of a Global online group of ALK patients (and caregivers) who is suffering with a rare type of Lung Cancer which is NSCLC with ALK gene mutation/rearrangement.
There are so many types of Cancer. Even in Lung cancer, there are so many types, sub types, so it is need of time to have patients group of particular type, upto mutation level, to rightfully support. In this group hundreds of ALK+NSCLC patinets from different countries are proudly part of, including us. This global group bring global experience & support together.
In India we are working that each and every ALK+ would connect with each other and fellow patients globally. The group in India, to support local needs including but not limited to ‘Timely and Affordable Access to Latest Treatments for ALK+ve NSCLC patients in India’. So if you found any NSCLC ALK+ patient in India or elsewhere, either connect that person with us or directly to our global online group.
Please found more details about Global group at https://www.alkpositive.org/, how ALK +ve patients can connect with other ALK+ve patients from India and Globally at Link here OR if you are checking this blogsite on mobile, then click/select ‘SHOW’ option as would be appearing on Top Left side of your mobile screen/ this page.
For advocacy and support other Cancer patients, please do follow and share
- Blogsite: By clicking on ‘Follow Blog’ option. if you are checking this blogsite on mobile, then click on ‘SHOW’ option as would be appearing on Top Left side of your mobile screen and then selecting the “Follow Blog” option.
- Twitter: Lets connect for advocacy & updates via Twitter. Our Twitter Handle – @R2SurviveCancer