Over the past three-and-a-half months I have been in a watch and wait phase. This is a period when treatment is not indicated but the progression of the disease is closely monitored. For a couple of those months the leukemia has been progressing negatively, slowly and steadily, while the preferred treatment wasn’t F.D.A. approved yet. On February 12th Ibrutinib was approved for use in CLL patients. The cost of this new drug is substantial so my doctors have sought ways of my obtaining it via a clinical trial. That didn’t work. The doctor wrote a prescription so I can begin treatment before the disease progresses much longer. Tomorrow (3/18/14) is the day the pharmacy believes they will have it in stock.
My reading about Ibrutinib leads me to believe it will take another 3 months before lasting changes occur. One man who has used it for three months reports he has regained 14 of the original 40-pounds he lost. I too lost 40 pounds. I have yet to find someone who lost 35 or 50 pounds. It seems everyone loses 40 pounds. Odd.
My main symptom is fatigue. It robs those of us with CLL of life. We sleep when we’d rather be active. Dad after day. Fatigue is better than being in pain, but it is debilitating too. Ibrutinib restores the lost energy over time. Maybe not all of it, but more than enough to live a “normal” life.
When I have some energy I am writing. Not my blog, obviously, but fiction. This past weekend I finished the first draft of an historical novel I am calling, Hangtown. Set in 1851, Hangtown was the name of the third largest community in California behind only San Francisco and Sacramento. In 1854 Hangtown residents, for obvious reasons, voted to change the community’s name to Placerville. My story is about love, adventure, and finding oneself.
I am starting the editing/rewrite phase. I’m thinking I’ll self-publish in paperback and e-book formats. It’s been lots of fun to do and is a major reason, along with the fatigue, that this blog has been neglected.
Lots to look forward to in 2014. I’ll keep you informed. Thanks for checking up on me. I appreciate it.
My reading about Ibrutinib leads me to believe it will take another 3 months before lasting changes occur. One man who has used it for three months reports he has regained 14 of the original 40-pounds he lost. I too lost 40 pounds. I have yet to find someone who lost 35 or 50 pounds. It seems everyone loses 40 pounds. Odd.
My main symptom is fatigue. It robs those of us with CLL of life. We sleep when we’d rather be active. Dad after day. Fatigue is better than being in pain, but it is debilitating too. Ibrutinib restores the lost energy over time. Maybe not all of it, but more than enough to live a “normal” life.
When I have some energy I am writing. Not my blog, obviously, but fiction. This past weekend I finished the first draft of an historical novel I am calling, Hangtown. Set in 1851, Hangtown was the name of the third largest community in California behind only San Francisco and Sacramento. In 1854 Hangtown residents, for obvious reasons, voted to change the community’s name to Placerville. My story is about love, adventure, and finding oneself.
I am starting the editing/rewrite phase. I’m thinking I’ll self-publish in paperback and e-book formats. It’s been lots of fun to do and is a major reason, along with the fatigue, that this blog has been neglected.
Lots to look forward to in 2014. I’ll keep you informed. Thanks for checking up on me. I appreciate it.