Sept. 6th - Bethesda, Maryland

Hello friends,
Cap'n Bob, Mama Kohl & Glenna are down in (hot) Maryland. We just finished a full day at the NCI/NIH. What a gigantic facility this is! The day began with Glenna filling out lots of paperwork, then routine, base-line blood work, EKG and chest Xray. Then hours of discussions with research nurses, counselors, doctors and more doctors. Finally the docs explained to us the probable protocol that Glenna would follow. This treatment involes removing one of her more accessible tumors, and extracting the T-cells; then rapid-growing the lymphosites which would then be put back into her body. These new lymphosites would (ideally) attack the existing melanoma cells. This treatment would involve an initial dose of chemotherapy which would clear out her body's immune system before reinserting the new cells; and then once the cells are inserted, a final dose of Interlukin to "pump them up" to do their work.
This all sounded clear and good, and we were going to wait until their board meeting on Monday where the team would concur that this is the best method of treatment for her.

Then we had a visit from the lead team doctor who - after studying Glenna's files - had alot of very specific questions for Glenna - involving exactly what her symptoms have been since she finished her first clinical trial (the blind study which included either CTLA4 antibody drug, or the melanoma vaccine - or both). Once she heard all of Glenna's symptoms and the timeframe surrounding them in relation to the clinical trial, she deducted that she feels strongly that Glenna did in fact receive the CTLA4 drug - and that the reactions she has been having could likely be the drug finally kicking in and working with her immune system on the cancer cells. Whoa! This was exciting news to think about - although shocking, as we had totally dismissed this trial as ineffective. She told us that there have been cases of patients on CTLA4 who did not show any affects of progress until up to 10 months after the trial ended (it has been less than 5 months for Glenna). The doctor is going to contact Glenna's oncologist at MGH and discuss this with him, but in the meantime we will give a little more time to waiting and having another set of scans in a couple of weeks, which should ultimately tell us if this theory is correct. If it turns out not to be so - and if her sites continue to grow, Glenna will then come back to NCI and follow the previous treatment protocol that was discussed.

This is a brief overview of what we were faced with today. Our minds are spinning with all of the information given to us. These doctors are brilliant down here and we feel very comfortable putting Glenna in their hands. We will have some more information in a few more days to deliver - and even more in a couple of weeks. But I wanted to keep you all posted on the news of the day. And what a day it was!

And now we will spend the next two days "on vacation" enjoying summer in Maryland, crabcakes, and the Sox beating the shit out of the Orioles!!! Love to you all - and lets all keep praying for miracles.

Love & kisses, M.K.