Upcoming, by Libby

An update about the coming weeks. Last week, Dr. Horwitz spent an hour with me. I am still planning to go to Mayo to meet with Dr. Ansel. I want to hear his thoughts and see if they would do anything differently and also give them an update on me since their tumor registry has followed me since 1975.

The current plan is to stay on the Brentuximab Vidotin – just had my third dose- and do a scan next week to see if I am in remission and then shoot to do the transplant in early January after 5 doses at Emory with Dr. Waller. 

Dr. Horwitz was reviewing my Foundation One results during my appointment and he looked at the Bone Marrow Transplant guidelines, reviewed Nieto’s Autologous approach with SAHA/Gembumel but, all in all, he still would recommend the Allo transplant for me for the best chance of a durable cure. This is primarily because my ALCL seems to be chemo resistant …due to the fact that it came back so quickly. Ugh! 
He felt that the microbiome was great for the future but did not seem to think it would change my treatment plan for now. He was going to look at MSK’s tumor analysis and see if any new markers were found. He also wants to talk to Steve Ansell after my appointment and compare notes with him. He will be at a conference with him on a date after my appointment in Rochester. More to come, but wanted to give that update. Thank you for your continued prayers and support!

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