Hi everyone
This is a follow-on message from a previous post I made where I had issues with neck lumps on dasatinib but I thought that the results of a difficult six-week experience merited their own thread, in case someone else has this problem in the future.
In summary, I developed two swollen lymph nodes on the right side of my neck about 18 months since starting on dasatinib. The larger one was almost 3cm in length and prompted concern from my haematologist. She suggested ultrasound sonography followed by a fine needle aspiration of the affected lymph node. When this suggested possible malignancy, the lymph node was removed surgically. I wasn't worried at all at this point as I had read some research where a small group of patients had developed swollen lymph nodes while on dasatinib, and this study was consistent with my own experience, both in terms of the timing and the symptoms.
Unfortunately, the surgeon who removed the lymph node was, to put it mildly, rather undiplomatic. Before the surgery, he emphasised that they were taking out the entire lymph node "to grade and stage the lymphoma", as if it were a foregone conclusion that this was a lymphoma. This terrified me as I was already coping with one cancer diagnosis, and I thought that it would be extremely difficult, if not impossible, to now have to cope with a second one. I was promised pathology results within "two to three days" (in South Africa, these things are much faster than in the UK) and began worrying when they were not back after a week, when I was scheduled for a follow-up appointment with the general surgeon.
At this appointment, the surgeon told me that, while the wound was healing well, he had "not a shadow of a doubt" that this lymph node was malignant, and that it was "critical" to get the pathology report as soon as possible in order to start the necessary chemotherapy, because the size of the lymph node was a concern, as well as the speed at which it had enlarged in size (from nothing to 3cm in less than three weeks). Also, the pathology report was likely to take a longer time because the doctors would have to determine whether what kind of lymphoma it was. This, of course, was devastating news for me and I started to gather information about how lymphoma is treated. I wondered how I could cope with RCHOP chemotherapy on top of the dasatinib.
One week later there were still no results, and I phoned the haematologist's office. Later that day, I received a message from the receptionist saying that an urgent appointment had been scheduled for me the next day and that I must please come in at 15:00 - obviously, this added to my anxiety as I assumed that good news could be communicated over the phone and that the bad news required an office visit. I prepared myself mentally for a second cancer and a new challenge - it felt as though I had won life's unlucky lottery!
Fortunately, the office visit brought the news that, after a barrage of tests, the pathologists had not been able to find anything suggesting lymphoma. The time taken was so long because they had to keep on testing in order to exclude all possible types of malignancy, and they concluded that I was experiencing reactive lymphoid hyperplasia, which is basically a benign lymph node swelling caused either by illness, HIV (which was excluded by previous blood tests and because I don't engage in any of the risk behaviours associated with that condition) or drug complications. So I had to make the decision on whether to discontinue the dasatinib or to continue.
Since I am nervous of starting nilotinib and since I have few other side effects on dasatinib, I decided to stick with it for now. I will have to monitor my remaining enlarged lymph node carefully and see the doctor if it increases in size or if any new ones develop, but for now I'm staying on the drug (even though I haven't reached MMR after 18 months of trying). The three main messages I want to give the CML community from this experience are as follows:
1) Dasatinib can, rarely, cause swollen lymph nodes that mimic lymphoma. Be sure to consider this possibility if this happens to you!
2) If a pathology test takes unusually long to be completed, this doesn't have to be bad news! In my case, it was quite the opposite as they may have found a lymphoma quite quickly - the length of time meant that the doctors were testing every possibility and coming up empty.
3) An "urgent" office visit also doesn't always mean bad news. I know that many of us were diagnosed originally with urgent referrals to a haematologist, but "urgent" doesn't always mean "terminal".
Good luck, everyone, with your continued recovery. I am just posting this in the hope that it helps a minority of patients who develop these neck lumps - hopefully few people need this posting!
Best wishes from South Africa
Martin