|David W. Sumner, March 2015|
A few days ago I got an email from another CLL’er wanting to know how Dave was doing after five months of Ibrutinib. (Sorry for the long delay in posting.) We answered her by email, and here’s the update for everyone else who was wondering.
First of all - Dave is still here and still on the Ibrutinib. Keeping him on the drug has been a Kafkaesque nightmare of financial and insurance regulatory bureaucratic hurdle jumping. I’ll spare you the details, other than to say, never a week goes by without some heart-stopping phone call or letter informing us that he is no longer covered or that we owe some pharmacy/doctor/hospital/insurance-company some impossible amount of money. It really would take a full time office assistant to keep up with and make sense of it all. We do the best we can. Sometimes we have a glass of wine and laugh about it - it’s just too absurd.
The good and the bad about the drug itself? That’s hard to tease out from the effects of the disease. The bottom line is that he is still here and enjoying life, several years after being diagnosed with a disease that was expected to kill him before now. He’s had a few close calls. I think he’s in better shape than he was last fall, before starting the Ibrutinib. At least the serious, debilitating respiratory problems have faded. And he looks good - better than he has in years, actually. Losing those bulky lymph nodes made a huge difference.
However, there is no shortage of problems.They mainly fall into three categories: fatigue, brain fog, and infections.
The fatigue is unrelenting and it is mental as well as physical. So far, we have not discovered any diet or sleep strategies that seem to help.
The brain fog is serious and it is probably the most disturbing aspect for Dave to adjust to. His memory for facts & details and his ability to focus have been shredded.
The infections are what worry me. Every little thing (a hangnail, a blister, an ingrown hair) turns into a huge raging abscess, without medical intervention. And medical intervention is hard to come by since we cannot find a family physician who takes his insurance. (His oncologist is fine with the insurance, but the oncologist does not deal with infections.) Which means he has to be treated in emergency rooms. Which leads to different problems …
But dealing with new problems is better than no deals at all. So, we’re keeping on.