Samantha posted some replies to my earlier post even though she was dealing with the passing of Mickey. I am grateful for her contributions (as I am everyone's) on this forum.
https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/csf-flow-test
From 9-29-16
"Sadly today I will lay my sweetie to rest. He had passed away at MDAnderson on 9-24. His LMD was under control and he had started the TIL trail for progression in his liver,lungs and lymph nodes. They did a CT of the chest and abdomen on Sunday and all was stable. The third day in his blood oxygen were low and blood pressure was low, they did a chest X-ray that showed possible aspiration gave him lasiks then they took him to the ICU where he passed away. They asked if I wanted an autopsy I said no more cuts.
Mickey's LMD was in his spine and they did do radiation there so that maybe way he had to have the flow test both times. He did the intrathecal with the IL2 but had to stop to get on this trial. We were going every eight weeks. In 2013 Mickey developed hydrocephalus (which is a side effect if intrathecal) that was when they put the shunt in. he had had WBR and two gamma knifes done and by the end of 2015 his brain was getting tired. He had the intrathecal done in 12-15 and by the time I got him home he could not make his legs move so we went back down there nothing found he got better we went home then the next one after being home an hour he couldn't talk we went to the ER here at home they said it was a seizure. When we went back for the next one Mickey progression had gotten worse so they wanted to try to get him in this trial.
I keep coming back here for the LMD Warriors, I know he would say he would do this treatment all over again. It was bumpy but I would go on the journey again knowing what I know."
Wishes of strength and support go out to you over the next weeks and months Samantha. Always think of Mickey's arms wrapped around you in his warm embrace. From now on every round of Mickey's includes a hole in one.
Even after the warriors have past they continue to contribute to those left behind. As the anniversary of Artie's death (which hit me especially hard even though I had never met him) I find myself reviewing many of his posts in search of pain relief options for Adriana.
My gratitude to all.
Rob
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