Nandini Dabbir, Hyderabad, India
The newest GISTer to join the ranks of LRG Global Representatives is Nandini Dabbir of Hyderabad, India. Living with GIST since 2007, Nandini is also a survivor of papillary carcinoma of the thyroid, which was diagnosed in 2003. She is a the Friends of Max City Chapter Leader & GIST Advocate working with the LRG to support GIST patients on their journey.
“Being diagnosed with cancer will in all probability come as a shock to most patients and my journey is a testament to this. What helped me overcome this reality was to always have a positive outlook and hope for a better tomorrow. I suggest the same to everyone who is going through this difficult phase. Surround yourself with the people you love the most and be cheerful because this hard time shall pass.” Nandini shared.
Our new representative has a quite a bit of experience working with people. An administrator professionally, she has honed her people skills volunteering for many years teaching English to underprivileged children. Most of 2020, due to the pandemic, she met with her students one-on-one online. Nandini has also been very active in an international women’s organization known as the Inner Wheel Club, a group which promotes friendship and service across different countries of the world – “helping those in need and working toward the betterment of society”. She credits her internet research for finding Dr. Sameer Rastogi, a GIST specialist in New Delhi (and a member of the LRG Medical Advisory Board) and connecting with The Max Foundation and Sachin Sarcoma. She also found the Life Raft Group though an internet search when newly diagnosed, became an LRG member a decade ago, and has kept in close contact with our Program Services and Patient Registry Staff throughout her journey. Of the group that she works as City Leader with, she said:
“Friends of Max is an India based support group for CML and GIST patients on lifelong therapy. They are the recognised support group arm of Max Foundation, USA. I am a dedicated volunteer of this organization which empowers the patients by giving them a platform through multiple meetings and seminars, organised by Viji Venkatesh and her team, which enables the patients to share, learn and grow from each others experiences.”
Her journey began with a single tumor and treatment of surgery and Gleevec, but has now progressed to multiple tumors (slow-growing), exons 11 and 17, with a current treatment of Sutent, the second-line treatment for advanced GIST. For now, Nandini is doing well and managing her side effects well enough to pursue her passion of helping others, but is concerned about access to ripretinib, which might be more effective for her in the future, though not available in India. Access to all medications that can treat GIST is a problem for many in the international community and another issue that she is passionate about. Currently imatinib, sunitinib, and regorafenib are available to patients. Ripretinib, commercially known as Qinlock, can be effective in treating GIST patients who have failed the first three treatment lines but is not currently available to patients in India. Patients who have the PDGFRa D824V mutation in GIST have access to Ayvakit (avapritinib).
“I think access to medicine has been difficult for many Indians and I think I can play a role in changing that dynamic with the LRG’s support,” said Nandini. Through her journey Nandini has remained hopeful with the support of her family and her attitude of positivity. We welcome her to the roster of amazing global representatives of the LRG.