Doing Really Well

This is the time of year for friendship, family and just snuggling to keep warm. Henry and his old friend Pound (who has been visiting for over a month) are really into that spirit.

This is my update on how I am doing after over two months now on iBrutinib.  I am feeling really quite well. It's truly remarkable actually. My lymph nodes have shrunk to almost normal. I have rediscovered my neck! I have more energy and less fatigue or other symptoms associated with CLL.
There are side effects: headaches, dryness of mouth, nose, eyes and throat (alleviated by lots of fluids), some joint pain and bruising. None are debilitating and all are very tolerable, considering that the drug is a life saver. My blood work is gradually getting better. As I have posted earlier one of the "interesting" consequences of the drug's action is to cause the WBC  (white blood cells) and ALC (lymphocytes) to increase for the first few months. This is because as the malignant lymphocytes begin to die they are released from the nodes and gather until they are flushed out.

Recent research on this drug and other imunotherapy drugs (iBrutinib is not chemotherapy) are all changing the way specialists view treatment. In the USA where money is no object (unless like most people you have a mediocre or inferior insurance plan) specialists are of the view that traditional chemo (FCR or FR) should now only be used in less than 10% of the time.  These protocols have been used for over 20 years now. So why the change? Well FR and FCR (particularly the Fludarabine) can cause damage to the DNA making us more susceptible to secondary cancers or a more aggressive form of Leukemia. But it was the most effective (and only) form of treatment for many years.  Here's a discussion by a prominent American specialist on the future of treatment for CLL. 

In Canada FR is cost effective. iBrutinib is not generally available for front line (first) treatment unless there are special circumstances such as certain genetic mutations indicating a higher risk disease or where FLudarabine is considered inappropriate. In BC it is only funded for people (like me) whose disease is resistant to Fludarabine or for front line if there is a 17 p genetic mutation.  Here are the guidelines. So, lucky for me I failed treatment with FR after four cycles. It's not the first time in my life that a failure turned into a success but certainly the most significant.

That's my news for now. iBrutinib is doing great things and I feel like I am roaring around, making good lap times and not too worried about crashing. So until next time enjoy your holidays, Happy Hanukkah, Merry Christmas and may the light be with you.   Thanks for dropping by!