My name is Amit Tandon. I live in Katy, TX (suburb of Houston) with my rockstar wife (Rupali), daughter (Vrinda) who is 15, and son (Vansh) who is 16. We are big foodies and love all sorts of cuisines. I love spending time outdoors. I also enjoy running (although my knees don’t always play ball). My EHE was diagnosed in my liver in the fall of 2007 at Yale, New Haven, CT.
My Christmas gift in 2007 was a liver transplant, which happened on Dec 22, 2007. I celebrate it as my second birthday. I also received chemotherapy after the transplant (Doxyrubicin). EHE recurred in my transplanted liver in 2012. I was treated at Dana Farber Cancer Center in Boston, and underwent 9 months of Thalomid therapy, which was successful in stopping the growth both in terms of numbers of tumors and the size. This time also, it was limited to my liver only. Since then, I have been stable and have been on a wait & watch approach. I am currently being followed by Dr. Ravi at MDA in Houston.
I wish more cancer specialists knew about EHE. Even in countries with well-developed medical infrastructure, very few know about EHE. It is extremely painful to see our global EHE patients/families suffer due to lack of knowledge on how to treat such a rare cancer.Due to its rarity, no major cancer institute or foundation is spending significant enterprise dollars on researching EHE. While this approach is understandable, it leaves patients and their families feel like guinea pigs when it comes to treatment. Dedicated research is the only way to find solutions for this rare cancer.
The EHE Foundation, its officers, medical panel, and members are often the only source of hope for EHE patients and their families. It has taken significant steps in compiling the single largest EHE patient directory, which includes a lot of excellent information and provides answers to several patients and families. The foundation has funded several programs dedicated to EHE research and has created awareness of this otherwise extremely rare cancer. It is funding dedicated EHE research projects in several extremely large cancer institutes, like MSKCC and Cleveland Clinic, allowing experts to learn more about it.
In my opinion, mind plays a very huge role in dealing with any major illness like EHE. It is extremely hard while desperately searching for solutions. I believe staying positive is the single largest factor I could control. Everything else was being managed by my care providers and family. When I was originally diagnosed, my Hepatologist at Yale Dr. Tamar Taddei told me, “90% of the treatment happens in your mind, modern medicine can only provide the remaining 10%.” We need 100% and then some to fight EHE. Spirituality and yoga has played a huge role in my life, and I encourage everyone to find their spiritual journey and I assure you that it’ll better prepare you to deal with not just EHE but any eventuality life throws at you. I follow @Sadhguru (ishafoundation.org).
