Thank you for clarifying this latest Idelalisib news. I just learned more from you than I have from my study team. You have a great way of making things comprehensible. Thought my journey might provide interesting follow-up.
Since August 2014 I have been in one of the now closed trials for treatment-naive CLL: Idelalisib combined with 12 doses of Ofatumumab through cycles 3-8, with incredible results. I was one of the lucky patients to have NO side effects from Idelalisib, unlike the majority of patients in my trial -- low ALT, no intestinal issues, no infections. Just melting nodes and increased energy. It was hypothesized that my success was due to high CLL involvement in my bone marrow when the trial began. My labs peaked in October 2015 and have been drifting downward, making me wonder if the drug was no longer working for me.
Last Friday, I was told to stop the study drug. By Sunday, I was feeling tired. Monday and Tuesday, I was nonfunctionally exhausted. Monday night I awoke with sharp pains in my left arm pit. By morning, large swollen nodes that had melted away over a year ago had resurfaced. Nodes on the sides of my neck are growing back, now lentil sized. I feel more clear-headed today (Thursday), and tire easily if I try to do something other than sit.
Frustrating when the Idelalisib was clearly keeping CLL cells at bay. My hematologist cites cases of regrowing nodes after stopping Ibrutinib, which sometimes recede on their own. We are both surprised at the speed of symptoms. Next step is to figure out what is next. Would be great to hear from others to learn of other experiences.
Interesting topic for a blog. I have been searching the Internet for fun and came upon your website. Fabulous post. Thanks a ton for sharing your knowledge! It is great to see that some people still put in an effort into managing their websites. I'll be sure to check back again real soon.
Thank you for clarifying this latest Idelalisib news. I just learned more from you than I have from my study team. You have a great way of making things comprehensible. Thought my journey might provide interesting follow-up.
ReplyDeleteSince August 2014 I have been in one of the now closed trials for treatment-naive CLL: Idelalisib combined with 12 doses of Ofatumumab through cycles 3-8, with incredible results. I was one of the lucky patients to have NO side effects from Idelalisib, unlike the majority of patients in my trial -- low ALT, no intestinal issues, no infections. Just melting nodes and increased energy. It was hypothesized that my success was due to high CLL involvement in my bone marrow when the trial began. My labs peaked in October 2015 and have been drifting downward, making me wonder if the drug was no longer working for me.
Last Friday, I was told to stop the study drug. By Sunday, I was feeling tired. Monday and Tuesday, I was nonfunctionally exhausted. Monday night I awoke with sharp pains in my left arm pit. By morning, large swollen nodes that had melted away over a year ago had resurfaced. Nodes on the sides of my neck are growing back, now lentil sized. I feel more clear-headed today (Thursday), and tire easily if I try to do something other than sit.
Frustrating when the Idelalisib was clearly keeping CLL cells at bay. My hematologist cites cases of regrowing nodes after stopping Ibrutinib, which sometimes recede on their own. We are both surprised at the speed of symptoms. Next step is to figure out what is next. Would be great to hear from others to learn of other experiences.
Interesting topic for a blog. I have been searching the Internet for fun and came upon your website. Fabulous post. Thanks a ton for sharing your knowledge! It is great to see that some people still put in an effort into managing their websites. I'll be sure to check back again real soon.
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