Friday, February 22, 2008

Julie

This is a site for Julie Clapp (DeLoid), my little sister.

To the best of my recollection, about 18 months ago she came up a bit lame after skiing; had some pain in her hip and back. It persisted for a while, and eventually prompted her to get it looked at. An X-ray didin't show much, but it was a wide enough X-ray that it included the lower part of her chest, and there was something there. A few weeks of more X-rays, CT scans, MRI's and a biopsy and she was diagnosed with stage IV adenocarcenoma of the lung, AKA non-small cell carcinoma, the one that isn't related to smoking. She never smoked. She was 37.

She got into a phase II clinical trial with an EGFR tyrosine kinase inhibitor drug (erlotinib/Tarceva) at Dana Farber, and in a few short months the drug wiped out almost all of the cancer. Some, just enough, of the cancer persisted however, resulting in a pericardial effusion (fluid around the heart) that required a pericaridial window procedure (an opening made to allow the fluid around the heart to drain into the larger chest cavity) that was performed at Brigham and Women's Hospital, about a year ago now, I think. Otherwise it was smooth sailing for a while. She was Dana Farber's star patient.

Then, on a regular visit with scans, it seemed that the cancer had mutated and was no longer responsive to tarceva. That was last July.

But there were other trial drugs that were not susceptible to these mutations. They were "Permanent" EGFR Tyrosine kinase inhibitors. Julie was accepted into a trial of such a drug, though it was still in Phase I, which is quite a bit different. After several weeks of trial dosages, skin biopsies and dozens of blood samples, she was set to go.

But a few months earlier, Julie had started having symptoms of confusion, and difficulty finding words. It was almost imperceptible at first, but it worsened, slowly and insidiously, until it was difficult for her to talk at all. Ultimately she was diagnosed as having a paraneoplastic (caused by cancer) autoimmune encephalitis. Apparently some antigens on or within her cancer cells had activated cytotoxic T-cells or antibody-producing B-cells that also recognized similar antigens on her neurons. The immune processes that normally identify and kill infected cells or tumor cells were now directed at her own brain cells.

Treatment with large doses of steroids and Immunoglobin, that sometimes help in other autoimmune disorders, were ineffective, as they usually are with autoimmune encephalitis. Plasmaphaeresis has also failed with these cases. This suggests this might be a T-cell mediated process - though it seems no one has tried T-cell modulating therapies for this disorder - yet). The only thing that sometimes has been shown to at least slow the deterioration is to completely erradicate the tumor cells, which is nearly impossible in any case, and because of Julie's weakened condition she was no longer a candidate either for a new clinical trial drug or for chemotherapy, so her cancer must for now be left untreated, and erradicating it is not an option.

In the last few weeks Julie's condition has continued to worsen. Clinically she is in a moderate to severe coma (glasgow ~8-10)

The best doctors in the world from Dana Farber and Brigham and Women's hospital, and the scientific literature published by the best researchers in the world, clearly indicate that the damage is irreversible, and will continue to progress. While we can hope and pray that by some miracle she will recover, as someone with a medical education who has spoken with the doctors, and has read the literature, I have to say that the outlook is incredibly bleak, and that we must prepare for what is most likely inevitable, and do everything possible to maximize the quality of life for Julie for whatever time she may have remaining.

5 comments:

Christine Pote said...

My heart and prayers go out to Julie and my positive energy to her family. Julie and I graduated together in 1986 and were close friends for many years. She taught me how to ride a horse! I spent hours catching up with her at our 20-year HS reunion in November 2006. She looked so beautiful (as always), it was hard to believe she was sick. I will miss her terribly. Christine Pote (Salo)

Jen Tewksbury said...

Mr. & Mrs. Deloid,

We think of you so often and are extremely saddened to hear this news of Julie. Our thoughts and prayers are with you and your beautiful family.

Love Chris & Jen Tewksbury

Montessori Mama said...

This blog is heart warming and dear. I believe in using this amazing medium for sharing and to reach others you may not personally encounter. Your sister is a beautiful and kind woman, a loving mother, who in her life has cared for so many people. This world is a more beautiful place because of Julie. I was Jessica's preschool teacher and hearing about Julie's illness makes me very sad especially for Jessica and her sister and brothers; for all of you. I'm sorry this is happening to your family and I admire you for writing about it in such a public way.
In loving PEACE
Jennifer

Martha Conway-Cole said...

Glenn, thank you for this blog. It is useful for many who care what is happening with Julie but who do not wish to intrude.
Julie is an admired and deeply involved member of our community in Belfast,ME. Julie and Jon have been the backbone of our Bluefish swim team, our nascent sailing program, the Y and our schools. I know of Julie's extra efforts and dedication to ill friends in her work as a pharmacist.
Reading of Julie teaching her cousins to swim reminds me of her best contribution to our community, her strong, athletic, charming and unfailingly kind children. Their personalities reflect her great care and investment in her family.
Jonathan has made a big impact on my boys through his attention to them at sailing lessons and swim team. Jerahmy is the boy who can come over to play with my older son and somehow he manages to include the younger one also. Jessica and Jillian are the kind of girls who can race and play tag with rough boys and never seem to cry or tattle.My kids love the Clapps.
Last summer I talked with Julie a bit about her sailing trips with the kids and I was struck by her calm and positive experiences. In a situation that I regard with some alarm,being stuck in a small space with my active children, Julie and her family are clearly happy and enjoy each other. We all try to be good, strong, calm mothers but Julie clearly has succeeded.
I continue to hope for her recovery. We need her.
Martha Conway-Cole

dee said...

Glen, Julie would love what you have written. She is very lucky to have such a wonderful brother to let all the people who are so worried about her know how she is doing.I have not had the pleasure of knowing you and your sisters but your father and I have been friends now for 15 years. I was hired by CVS on August 19th 1992 and Jack was my first partner for more than 3 years. I feel I know you all as well as my own brothers. My heart aches that you may have to endure such pain once again. However,if there is a miracle I do know that Julie will have a wonderful family here to continue loving her and if she goes on she will also have family waiting to love her. Julie will always be surrounded by love. Dee Wigley