Yesterday (Wednesday-June 19) was the most devastating day of my life. I lost my beloved partner of 38 years, Tavinder. Last September, she was diagnosed with a rare cancer, cholangiocarcinoma. Since then, despite every effort by her and top oncologists and researchers, she had to fight a battle that she could not possibly win.
It started last July when we went on a family vacation to Puerto Vallarta in Mexico. From the time we boarded the flight, Tavinder had stomach cramps and felt weak. Over the next few weeks, she had other gut and fatigue symptoms which kept getting worse. At the end of September, a gastrointestinal test revealed something that we could not even have imagined: she had bile duct cancer. By this time, she had practically no appetite, lost 20 pounds, and was extremely weak. The cancer had begun to spread to other parts of the body.
Her treatment began with the standard regimen of chemotherapy but this was debilitating and didn’t stop tumor progression. We then moved to the next step in the cancer treatment process: genomic sequencing and matching cancer mutations with pharma-company sponsored clinical trials. She became a guinea pig for a very promising drug that attacks the IDH1 gene mutation: Ivosidenib. This showed initial promise but also failed to stop the tumors. She then received a regimen of a different chemotherapy which failed. We were about to try a new set of drugs which would likely have healed her, but her body gave in.
The doctors who were helping Tavinder are the best of the best and we had access to the most advanced medical technologies. Jiali Li, her oncologist, was available day and night and did all she could—as did the team of scientists who were advising us. I also cancelled all of my commitments so that I could look after Tavinder 24 hours a day and research cures. I largely stopped writing; nothing in life was more important to me than my wife.
The reason we could not win this battle, as I learned, is that our medical system is stuck in the dark ages.
Technology has now progressed to the point that we can cure almost every disease. I explained this in a keynote I gave to oncologists, medical researchers, and cancer patients that you should watch: Advancing technologies and the tipping point for Medicine. However, we do things the way as a century ago, with a system geared to meet the needs of the pharma companies and appease regulators. Patients audition for clinical trials with drugs and dosages formulated to maximize chances of FDA approval and one-third or more receive placebos—with the rest having a slim chance of being cured. The entire drug validation process takes 10 times longer than it should and hundreds of promising drugs fail to see the light of day because of unexplained adverse reactions in small populations. Meanwhile, doctors have to act on limited information and guess what the best treatments are.
In an op-ed for the New York Times, The Search for Cancer Treatment Beyond Mutant-Hunting, oncologist and Pulitzer Prize-winning author Siddhartha Mukherjee explained the failure of Precision Medicine. Genomic sequencing, which dropped in price from hundreds of millions of dollars to thousands over a 15 year period, was supposed to herald this medical revolution. Yet it is akin to the drunk looking under a lamppost for his lost wallet. We are doing everything wrong and should instead flip the entire system on its head, making the tumor the guinea pig in the place of the patient
We now have the ability to test chemo and targeted therapies using Patient Derived Organoids (PDOs), three dimensional cell cultures created from a biopsy of the tumor. There are hundreds of research labs all over the world using these yet they are not actively used in the field, largely because of ignorance and motivation.
I was introduced to the leading commercial PDO lab by a startup that manages tumor samples, SpeciCare. I also had help and guidance from some of the top researchers in the world, in particular Katie Kelly of USCF, Nabeel El-Bardeesy and Keith Flaherty of Harvard Medical, Mitesh Borad and Kabir Mody of Mayo, Rachna Shroff of U-Arizona, Milind Javle of MD Anderson, and Siddhartha Mukherjee of Columbia. And then there was Napster founder and billionaire Sean Parker, who spent many hours teaching me the basics (Sean has invested $250 million in finding a cure for cancer). The PDO testing lab, SEngine Precision medicine, is a spinoff from Fred Hutchison Cancer Center headed by a brilliant oncologist, Carla Grandori. Last month, it created an organoid model of my wife’s tumor and tested this with 135 cancer drugs.
SEngine accurately predicted that all three treatments my wife had received were sub-optimal and showed that her tumor was most responsive to the inhibition of a pathway, MEK, that we had not considered because of the availability of clinical trials. Based on this, we gave my wife one of the most promising MEK inhibitors, Trametinib. Astonishingly, within 10 days, it alleviated her most troublesome symptoms and reduced the size of some tumors (with others progressing, something called a mixed response). Tumors mutate and have what are called “escape hatches”. The bigger problem was that Trametinib had strong, debilitating side effects; standard dosages of drugs are often 2-3x what they need to be, the level which enabled them to pass the FDA process.
Carla recommended a different MEK inhibitor, Binimetinib, which showed such a strong response in the lab that Tavinder could take 1/3 of the recommended dosage. And she had her scientists test combinations of MEK inhibitors with other drugs to close off other escape hatches. They found 3 combinations that had the promise of treating all of the tumors, all with significantly reduced dosages. Yet by the time we procured the drugs, Tavinder had run out of time; she had endured more than enough and her heart and liver failed.
If I had known last September what I know now, and we had access to the SEngine tests, we may have treated the cancer and bought time for the cure—which will likely come from immunotherapy (see lecture linked above). So I have lost the most important person in my life.
I am sharing all this with you so that you can learn from my experiences and leapfrog the process for other patients you may know. Tavinder said that if her suffering would help prevent the suffering of others, it would be worth it. She also instructed me to spend the rest of my life helping others—and that is what I plan to do. I have no idea what is next for me but I will do whatever I can for the world.
Tavinder was a very private person, she did not believe in pomp and ceremony. When our sons got married, we did simple weddings with just close family members present at the Gurudwara. For the funeral, we will do the same, just a very simple prayer at the Gurudwara. I will be taking some of her remains to New Delhi next week so that her parents can do a ceremony with their closest relatives. We are doing nothing else, I want to celebrate Tavinder’s values, guidance, and aspirations rather than mourn her death.
She was always my conscience and guide, the person who always prodded me to give back and do good. She taught me that what is most important isn’t getting rich or achieving fame, it is what you do for others, how much you give rather than take. I am going to honor her by doing what I can for the world. I don’t know when I will start writing again but I will certainly continue teaching, helping, and mentoring.
Please don’t send flowers, cards, or anything. If you want to do something for us, please give your partner a hug, do a kind act for someone in need, and make a donation to your favorite charity. Please forgive me in advance if I can’t respond to any emails, I need to disconnect for a while and adjust to a lonely life without my beloved friend and partner.
Thanks,
Vivek
(Prof. Vivek Wadhwa is Distinguished Fellow and professor, Carnegie Mellon University Engineering, Silicon Valley; Distinguished Fellow, Harvard Law School, Labor and Worklife Program
Website: www.wadhwa.com, Twitter: @wadhwa
Author: The Immigrant Exodus, Innovating Women, The Driver in the Driverless Car, and the latest: Your Happiness Was Hacked: Why Tech Is Winning the Battle to Control Your Brain—and How to Fight Back)
