Hi everyone
Just over a month ago I wrote a detailed post about how I was switching from dasatinib to imatinib due to the unusual and terrifying side effect of swollen lymph nodes that mimicked follicular lymphoma. These enlarged lymph nodes were proliferating very rapidly and the right side of my neck was full of them! My doctor wasn't sure what it was, and tests showed that they were reactive. After some serious research and trawling through hundreds of online articles, I discovered two relatively obscure studies that found 13 patients who had had similar swollen lymph nodes while taking dasatinib. The change to imatinib was done on 2 May, and here is my update:
1) Within 10 days, the lymph nodes shrunk back to normal! It was astonishing: they were so large that they jutted out of my neck and were clearly visible to the naked eye, hard and rubbery to the touch, and measuring about 3cm in diameter. The shrinking was dramatic and astonished even my doctor.
2) I developed significant side effects to the imatinib: fatigue, rash, muscle pain, headaches and bone pain, as well as the dreaded periorbital oedema. The fatigue was terrible in the first two weeks and I had to take time off work, but it seems that my body struggled with the effects of both drugs (I think there was still some dasatinib in my bloodstream in the first couple of days, as I literally stopped one drug and started the other overnight). Luckily the doctor has given me some other medication - corticosteroids, anti-histamines and diuretics - to control these effects and this seems to have helped somewhat.
3) For the first time since diagnosis in 2015, my latest blood test showed that every single blood count was in the normal level. I had had a strange side effect on dasatinib called macrocytosis (I think) where my red blood cells were larger than normal. This seems to limit their ability to take up oxygen. I now feel a lot better than before and many people are commenting on how healthy I look.\
4) There is a great deal more creatinine present in my body after starting imatinib. From a normal eGFR (kidney function test), mine has dropped to only 72 (normal is 90 or above). However, this seems to be a common consequence of imatinib and doesn't appear to be cause for concern.
5) I am a little worried that the imatinib won't control my CML as well as the dasatinib did. However, I have my follow-up on Monday and it will be interesting to see what my BCR-Abl count is.
I would like to express my heartfelt thanks to everyone on this forum who responded so kindly, positively and wisely to my previous post. I was feeling so dreadful in the first couple of weeks on imatinib that I lacked the energy to use my computer to respond, but I read all the kind wishes from so many people and am so grateful to this fantastic community. David and Sandy, you deserve a great deal of praise for making such a difference to our relatively small group of patients.
Finally, I just want to emphasise that knowledge is power. Through detailed research and a quest to understand my condition better, I stumbled upon these two journal articles about the lymph node swelling. Without these, I would not have been able to discuss my fears meaningfully with my doctor because the side effect is so unusual that she had not heard of it. This forum is a tremendous source of knowledge and empowerment for people living with CML!
Best wishes to everyone
Martin