Rise To Survive Cancer

To continue with our ongoing efforts for Lung Cancer patients in India, Vivek has took the role & responsibility of National Coordinator of India for ALK Positive group which is an international group of Non-Small Cell Lung Cancer (NSCLC) patients and caregivers afflicted with the Anaplastic Lymphoma Kinase (ALK) gene mutation/rearrangement.

It is great responsibility & lots of work to do for ALK positive Lung Cancer patients in India.

If you come to know about any Lung Cancer patient in India with ALK positive mutation, then either:

• Please let me know at risetosurvivecancer@gmail.com
• Direct to https://www.alkpositive.org/
• Direct to closed Facebook page https://www.facebook.com/groups/ALKPositive/

 

Kusum & I got wonderful advocacy opportunity as got honour to be invited as speaker at Novartis.

It was amazing to be there and to represent Cancer Patients & their needs, with thousands of Scientists & Global senior Leadership at Novartis.

Great experience…..Hope our story & discussions would have encouraged the Researchers to do more research for Lung Cancer patients globally & bring more Clinical Trials to India.

#WorldCancerDay 4th Feb
#PatientsEmpowerment
#NeedMoreResearch
#LungCancer
#LCSM
#ALKPositive

In a boost for our ongoing work & fight for better access to latest medicines for Cancer patients especially Lung Cancer patients in India, we got an honor to meet & interviewed by Dr Upal, Director of Patient FoRCe at LUNGevity (world largest, successful & influential Lung Cancer non-profit organization, based in US). Dr Upal who became a friend, mentor & guide as soon as we met, who in his short trip to India, ensured a visit to our place to meet.

We are learning, determined & getting more confident with increasing support to see a day when no Cancer patient in India will die, due to non-access of a medicine that is available in any country of world.

Link of blog as written by Dr Upal for LUNGevity website, based on our interview as below:

https://www.lungevity.org/for-patients-caregivers/blogs/voices-from-the-community/new-year-new-inspiration-and-new-resolutions

Much needed conference on Lung Cancer as “Lung Cancer Consortium Asia” has happened in Mumbai, India.

It was great honor for me to present as panelist while having the big responsibility to rightly represent Lung Cancer patients, caregivers in India along with global patient support gp of NSCLC ALK+ patients.

“Lung Cancer Consortium Asia” conference has also provided rare opportunity of open, direct, honest discussion between country’s best Oncologists, Radiologist & Lung Cancer Patients, NGOs..Great discussion, Great Learning for all

Kudos to the organizers especially to Dr. Kumar Prabhash (Prof. Dept of Medical Oncology, Head Thoracic oncology, Tata Memorial Hospital). Such a humble, caring Doctor – think, talk and work only for patients

#LungCancerAdvocacy #RiseToSurviveCancer

 

Recently we got the opportunity to attend a Cancer related conference on an important topic “Affordable Cancer Care in India” which was attended Minister of State in the Ministry of Health and Family Welfare, Govt of India, Bureaucrats including Director General of Health, Policy makers, country’s top Oncologists and many Innovator & Generic pharmaceutical industries representatives.

It was good conference as all topics were critical for patients and their family especially when comes to financial impact with Cancer. We want to congratulate ‘BCPBF The Cancer foundations’ and organisers to gather so many key stakeholders together and putting such critical patients sensitive & related topic on table.

Though as we experienced before affordability, access is issue. If we do not have access to right & latest medicines in India, then all other things would become secondary. And I got the opportunity to raise this point that before affordability, access is issue….access to latest medicines & clinical research for better treatment & long survival for Cancer patients in India in urgent medical need.

All discussions by panelists & speakers were open and progressive. I hope policy makers would hear the recommendations from conference.

But yes, one thing I found lacking and it is common in India but wish to share is – Lack of ‘patients voice’ or ’empowered patient voice’ in such important conferences & discussions. We are talking and caring about patients, in that scenario as very common in western countries where patients have empowered voice, patients advocates should be part of each sessions like Doctors were.  This will also help to understand the issue better as you are hearing who are suffering and to raise demands more strongly infront of policy makers. Despite that we are happy that stakeholders are thinking & talking about such sensitive topic where with Cancer, patients & family usually lost all available resources & have to struggle to survive.

We will continue to raise patients voice ✌️

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 

Many thanks!!