Jonathan had been having odd and disconcerting pain for many months in 2017. Sometimes it was something he felt as a "squeeze" that would affect his extremities for a minute, a few minutes. But sometimes there would be a pain in a hip or his side. He'd teach, work, write, swim, walk, bike, and mostly try to ignore this thing that his local doctor told him was nothing.
Winter of 2018 brought newer worries from this pain and then sudden feelings too difficult to ignore. A week in the Stanford University Hospital brought relief and some suggestions that there was reason to search for underlying problems, likely to be treatable. All agreed that he had been having small strokes for months and that this was not the problem but the symptom. Finally, he was diagnosed with adenocarcinoma of the lungs in May 2018. His doctor started him on chemotherapy and an immunotherapy and luckily his doctor sent his tissues out for genetic testing.
If you have lungs, you are at risk for developing lung cancer. But only 4% of lung cancers are the type that Jonathan developed, a particular adenocarcinoma (glandular cancer) with a mutation that rearranges the ALK gene. Approximately 72,000 new cases of ALK+ lung cancer are diagnosed every year in the world and 65,000 deaths result from the progression of the disease annually. This lung cancer particularly affects people who never smoked, and they are thus the victims of a stigma about lung cancer which depresses the overall contributions to research into lung cancer medicines because of how the disease is associated with smoking. Clinical trials brought about success in prolonging the survival of those with the ALK rearranged cancers and Jonathan was an excellent candidate for new therapies.
After 18 rounds of IV chemo, he was switched to one of the pills that has given many of the ALK positive patients significant improvement in their conditions, sometimes bringing their cancers under control for multiple years. After a five months with good improvement, we had a setback and switched to a different oral chemo. In the last month, Jonathan started to complain again of the squeezing. More clotting was clearly happening, and with Jonathan this activity is very dangerous.
Last week he suffered an embolism to his heart for which there is no remedy. This has all been terribly heartbreaking since we had every expectation that miracles were going to happen with the targeted therapies that were made available recently. For many non small cell lung cancer patients, these new mechanisms for inhibiting the gene that is driving the cancer have worked real miracles, extending their lives so that they can experience more of living as nearly cancer free.
Jonathan and I (Jenny) are asking you to donate to the research that would most certainly have found a way to extend his life if we had found the right therapy.
Over the past 2 years we have been supported by an amazing group of ALK+ patients, many of them research science advocates and patient educators. Our desire is that you make contributions to this cause in lieu of gifts.