Highlights from this year’s meeting of the Histiocyte Society
This is part 2 of our series recapping the events of the 38th Annual Histiocyte Society meeting. Click here for part 1.
Every 3 years there is a passing of the torch between the old and new Histiocyte Society President. Briefly, the membership of the Society elects a president every 3 years, and there is one-year where the previous president stays on the board as an advisor to the new president.
The Histiocyte Society’s new President, as mentioned in the last post, is Dr. Kim Nichols, Director of the Division of Cancer Predisposition Department of Oncology at St. Jude’s Children’s Research Hospital.
She sat down with Kathy Wisniewski, who is a member of the Histiocytosis Association team and has served as the Secretariat for the Histiocyte Society for over 10-years (this role is part of a partnership we have proudly held for over 35 years) and host of the Beyond the Diagnosis Podcast to speak more about her new role as the president of the Society. Below are snippets from that interview, and some notes added just for the blog about her highlights from this year’s Histiocyte Society Meeting.
Early introduction to Histiocytosis
I was born and grew up in a small rural town in Upstate New York and loved to ride horses, so I went to Dartmouth because they had an equestrian team. I originally wanted to be a veterinarian. When I was at Dartmouth for that, I fell in love with the biological sciences. I took a year off school because I wasn’t quite sure what I wanted to study yet. During that year off I worked as a research technologist at Dana-Farber Cancer Institute in Boston. I learned about all the ways you could harness the immune system to better treat Cancer. That led me to go to medical school instead of pursuing a career as a verterinarian.
I went to Duke Medical School in North Carolina then completed a pediatric residency at Children’s Hospital of Boston and a pediatric hematology/oncology fellowship at the Dana-Farber Cancer Institute. During my time as pediatric resident, my interest in Histiocytosis emerged. My mentor was Dr. Robert Arceci, he was a tremendous force in the field of histiocytosis.
I realized, through mentorship with Dr. Arceci and my exposure to children with histiocytosis and their families, how challenging these disorders were. I really wanted to do everything that I could try to improve the treatment and outcome for these children. They serve as my inspiration every day toward those goals.
Further and current work in Histiocytosis
Following my training I went on to work at Children’s Hospital of Philadelphia (CHOP) where I mainly treated Hemophagocytic lymphohistiocytosis (HLH). While there I helped to develop the histiocytosis treatment team. While at CHOP I developed the hospital’s first multi-disciplinary treatment team for children with HLH and other forms of histiocytosis.
I most recently moved to St. Jude Children’s Research Hospital in Memphis, TN. Here I have had two roles, one as the director of the Department of Cancer Predisposition and working closely with my colleagues Melissa Hines and Patrick Campbell running the Histiocytosis and Immune Dysregulation Team.
When I went to my first Histiocyte Society meeting, I didn’t know a soul there, but one of the more senior pathologists, Dr. Ronald Jaffee, went out of his way to invite me to dinner with him. His one small gesture really influenced my entrance into the Histiocyte Society.
The Highlights of this Year’s Histiocyte Society Meeting
It was wonderful to meet in person for the Histiocyte Society meeting after a 2-year hiatus due to the coronavirus pandemic. There was a great feeling of energy and excitement as providers and family groups alike had an opportunity to reconnect and learn about the latest advances in the field of histiocytosis.
Among the highlights from the meeting were the presentations by Drs. Jan Inge Henter and Carl Allen. They opened the conference by discussing several of the advances and challenges that have occurred over the last two decades in the field of histiocytosis. Specifically, we have progressed from knowing little about the biology of Langerhans cell histiocytosis (LCH), hemophagocytic lymphohistiocytosis (HLH) and the rarer histiocytic disorders to understanding the genetic underpinnings of most of the various forms of histiocytosis.
These discoveries have allowed us as medical professionals to better diagnose and treat children and adults affected by these complex and often perplexing disorders. Despite the advances made, there are still several unanswered questions. For example, how do we build on the advances made to most effectively treat patients affected by histiocytosis and how do we do so with fewer side effects? How do we provide access to the best therapies for patients around the world?
In terms of LCH and the rarer histiocytic disorders, one of the most exciting highlights relates to the excellent responses that are being observed following treatment with drugs that target the RAS-MAP kinase pathway. Investigators from several centers reported their experiences using these drugs and described dramatic responses following the initiation of these agents. However, once these drugs are discontinued, histiocytosis often recurs. Thus, discussions are underway to determine when, whether, and how these drugs could be combined with chemotherapy to eliminate the abnormal cells in LCH or the rarer histiocytic disorders.
Alternatively, should patients simply be kept on drugs targeting this pathway to maintain disease remission? Much remains to be learned about the longer-term use and potential side effects of these drugs, especially in young children, so the debate goes on.
As regards HLH, several presenters described their research aimed at clearly expressing the molecular pathways underlying conditions associated with dysregulated immunity, such as classical “familial” HLH, sepsis, and CAR-T cell-associated hyperinflammation. For each of these conditions, we are still in the earliest stages of understanding the underlying causes and the roles played by immune-activating chemicals known as cytokines. Ongoing investigations are revealing similarities and differences between each of these conditions. By delineating these similarities and differences, doctors will be able to diagnose and treat these conditions more accurately.
One presentation focused on the long-term outcomes of children with HLH who have undergone stem cell transplantation. While many are cured of their HLH, they are experiencing complications later in life, particularly learning defects and other concerns involving the nervous system. Altogether, this study and several others presented at the meeting highlighted the great importance of gathering more information from patients and families about quality of life, both during and after the completion of therapy.
Histiocyte Society’s International Reach
We learned again, in our meeting with the international organizations and family groups, how critical it is that we all work together. There are several initiatives that we discussed to try to more effectively work together and learn from one another. We identified representatives of the Histiocyte Society who will serve as liaisons with the Histiocytosis Association and the family organizations. It is a simple, but really important step. We will be able to stay on the same page.
There were two projects that emerged from that meeting. One is where the family organizations will identify professional meetings or conferences where we or other select members from the Society can go and give lectures or put on seminars about the different histiocytic disorders. It helps us to spread awareness to those doctors who may need to deal with histiocytosis in other parts of the hospital, such as dermatology or rheumatologists. With our reach into their professional conferences, they will now be more aware of what special signs and symptoms of histiocytosis to look for in their own departments.
The second project is that we, on the Histiocyte Society side, agreed to develop educational materials: brochures, one sheets, etc. We will distribute these to the family groups so they can disseminate them locally to doctors and others in their area.
I am glad that we will have the chance for some of these organizations to get together again soon, in person and virtually when we meet here in Memphis in the second week of November.
Together, we really can work to cure each and every child with histiocytosis. We will go so much further, working together, than either alone.
Her future in the Histiocyte Society
Moving forward, I hope these partnerships with other organizations and family groups improve the identification and treatment of these disorders among many medical fields.
As a more senior member of the Society now, and as its president, I also hope that I can be the same guiding force to new physicians and investigators that Dr. Arceci and Dr. Jaffee were to me.
I am glad to be a part of the new mentorship program started by the Society’s education committee to help further that goal. The new physicians in our field are the lifeblood of the Society and soon will be leading it themselves.
We want to thank Dr. Nichols once again for participating in the podcast and adding a few notes on the Society meeting to the blog as well. She is a force in the histiocytosis community herself these days and we are so glad to have her as the Society’s new president.
If you’d like to hear the full conversation that Kathy had with Dr. Nichols, tune in to the episode of the Beyond the Diagnosis Podcast coming out next Wednesday.