Allan and I will be participating in our SEVENTH annual walk for the Dana Farber Cancer Institute Jimmy Fund on September 22, 2019. We feel so fortunate to be able to participate in this 10K walk from Newton to the Boston Marathon Finish Line at Copley Place. As some of you know, Allan had a relapse in October 2018 in the form of a small tumor in his right calf. The tumor itself responded to radiation and Allan had 6 months of combination chemotherapy January through June with azacytidine and a new medicine - venataclax (just approved by FDA in December 2018). On July 10, 2019, Allan had a normal PET CT with no signs of leukemia.
The experimental medication that Allan has taken since March, 2015 (AG120) received FDA approval for AML in July, 2018. It is marketed as Tibsovo (or Ivosidenib as the generic name). This medication has allowed Allan to progress each year to increasingly better health. It would be impossible to describe our gratitude for the remarkable treatment team and research scientists who have enabled Allan to move forward each day, month and year.
Allan initially developed symptoms of leukemia in fall 2011 and had his first stem cell transplant in April, 2012. By fall, 2013 he had a significant relapse and had a second stem cell transplant in January, 2014. He weathered both of these procedures very well but by December, 2014 he had a small tumor in his back. This was treated with radiation but things were looking pretty dark at that time. However, Allan was able to get on an experimental medication in March, 2015 – AG120 – a remarkable new medication targeted at the specific mutation of his leukemia, IDH-1. This medicine was only available in a Stage I trial but because he was being treated at the DFCI, he was able to gain access to this life-saving medicine. Essentially AG-120 is a metabolic drug that “fixes” any cancerous leukemic cell with the IDH-1 mutation and essentially makes it normal. Allan has been on this medicine for more than 4 years. As mentioned above, this life-saving medication is now FDA approved and available as TIBSOVO to people who are diagnosed with AML who have the IDH1 mutation. We are very hopeful that researchers will continue to identify genes that cause AML and develop new treatments based on this genetic information. It would be hard to describe our gratitude to the Dana Farber and the remarkable doctors and nurses who have cared for Allan throughout this incredible journey. Throughout all of this, Allan has continued to work, teach, mentor, and we have had opportunity to live life fully –enjoying our family and friends and traveling to Europe, New York, California, Bermuda among other places. To say we are grateful to the DFCI for making this possible would be a wild understatement. Please support my walk in honor of my remarkable husband who has somehow weathered all of this with fortitude, grace and good humor.