Hello!
I hope I'm not encroaching as I am not based in the UK, but I've found it quite difficult to find forums like this one for people to talk and ask questions about CML. If there are any suggestions about other resources I can look into I would very much appreciate it!
I am an expat living in China. My wife was diagnosed with CML last December. At the time she had lost a lot of weight, her spleen was very enlarged, and her WBC count was very high. Upon diagnosis she had an intermediate sokal risk score, and was started on tasigna (nilotinib) almost exactly a year ago today. Since then her treatment has gone extremely well. I'm not sure what her IS percentage was for the BCR-ABL test at diagnosis (forgive me if any of my terms are wrong, they are translated from Chinese), but in March (3 months after diagnosis) it was 1.3%, in June (6 months) it was 0.012%, and in September (9 months) it was 0%. She has also thankfully had almost no side effects, apart from some mild hair loss at the beginning.
Last week she did a blood test for her 12 month checkup, and BCR-ABL was once again detectable at 0.0074% (IS). Even though this is a really small increase, my wife is obviously feeling disappointed that it has rebounded a bit. I was wondering if any of you could offer some insight about this, whether it's significant, and what impact it might have on her treatment in the future.
For me this is a very strange thing to process. I am so grateful that my wife's treatment has gone so well, and when she got that 0% I was so happy I jumped straight out of my chair. However, since then I think both of us have found that we're actually feeling more anxious, like it's more stressful worrying about keeping something than getting it in the first place. I feel guilty saying that but that's the bizarre reality of the situation. This most recent result has added to that anxiety, and so far I have found it hard to find information about specific cases like this so I'm not really sure what to think. We are hoping to see the oncologist over the coming days, but since the doctor has so many patients to see it's usually impossible to get more than a few words out of her. If any of you could help us get a little bit of clarity or perspective I would really appreciate it.
Just to finish off, I would also be grateful for suggestions on how to connect with people in the community. As a foreigner in China I frequently feel like a fish out of water, but this has launched me into a whole other universe. My parents were able to come and visit before the pandemic, but since then I've been cut off from my family. Thankfully, my wife's family has been extremely supportive, and she has networked with quite a large group of CML friends which has helped her a lot. So far I have been kind of keeping to myself, but I think it's time for me to reach out and connect with others about this. Thanks in advance for any pointers you may have!
Happy new year to you all,
Chris