Hello all, I am a long time lurker on this forum (almost 9 years!) and I've always been able find answers to my questions here on this board before I even asked them...until now. So I'm coming out of lurkdom to ask for some advice/help from "the experts" here, i.e. the people who know what CML'ers are going through. I can honestly say that when it comes to CML advice, I trust you guys and gals more than anyone else, except my oncologist/hematologist.
My quick history:
- diagnosed with CML almost 9 years ago, as a 46 yr old female
- started on hydroxeurea for 2 weeks, then on Imatinib (Gleevec) for 5 years, then changed to Nilotinib (Tasigna) because the Gleevec side effects were just too exhausting
- reached MMR at 12 months, CMR at 18months, have been holding since.
Last fall (October 2015) I injured my left foot - I banged the big toe REAL hard and was black and blue and limping for a few weeks. In January 2016 I noticed the big toe seemed a bit swollen but it wasn't really painful, so just took it easy for awhile and it seemed to improve. In mid-February I started doing easy treadmill walking, about 30 minutes at a normal pace. The morning after my 3rd walk I woke up with a very painful toe and foot which my GP has confirmed is gout (blood tests confirm high uric acid levels). This makes sense, since gout tends to set in at the big toe joints, especially if they have had a trauma.
A review of my diet & lifestyle habits did not indicate anything that would put me at risk for gout, but I have learned that high uric acid levels leading to gout are a known issue with long-term TKI use. So I took a 1 week break from Nilotinib and my gout did indeed subside. As soon as I resumed taking nilotinib, the gout returned (in just 2 days! ouch!).
Here's the issue: My GP wanted to put me on NSAIDS and colchisine, but relented when I pointed out that these were not compatible with Nilotinib. I did convince her to prescribe me allopurinol, which I will receive today. The prescription is for 200 mg once per day. I asked if I should restart the Nilotinib immediately, or wait a few days, and the GP's response was "do whatever your oncologist/hematologist says". (I also asked about monitoring the Allopurinol dose because I have read that the protocol with TKI patients is to start with a small dose and increase it incrementally week by week, until an effective level is reached, but she wasn't very interested in hearing about that.) I will of course discuss this with my oncologist/hematologist, but the problem is that he is out of town for the next 3 days. I have contacted his office, but I don't expect a response until he returns.
So if anyone else has been in this boat with gout and a TKI, could you give me some advice about what your experiences were? Would you advise that I start both Allopurinol and Nilotinib immediately, or should I wait until I have taken the Allopurinol for a few days before resuming Nilotinib? And how quickly does the Allopurinol work? (I'm due to leave on a 3 week long trip 2 weeks from now, and am not looking forward to having gout problems while I'm traveling.)
Any and all input is welcome, and thank you all so much for all the information you discuss here. These boards have truly been a lifesaving resource for me these past years, and they will continue to be!