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LUMP on back of neck

Recently noticed a lump on the right side of the back of my neck. Could this be TKI related?

Hi there

I was on dasatinib and developed a lump on the back of my neck after about 2 years of 100mg daily. The doctor had no idea what it was and took biopsies when several more began to appear. Eventually the whole back and right side of my neck were covered in lumps and I convinced my doctor to take me off dasatinib as I found a medical study where patients in France developed these lumps.

The lumps all disappeared within five days of switching to imatinib.

Hope this helps! My experience with the neck lumps was absolutely terrifying for me.

Best wishes

Martin

Hi Martin, thanks for responding. Really strange, I had a larger lump and it has gotten smaller, but still there. In the morning when I wake up it is like a hard marble, and as the day passes it is there but not as palpable.  I have been on  Imatinib for almost three years and this is the first time it has happened. My first thought was that I had a new cancer!!! Still frightens me. I wonder if it is a side affect of all the TKI's?

Hi again

My lumps took over two years to develop so it seems to be a rare side effect that appears late in treatment.  I also found only three research papers where the phenomenon was studied, and all the patients in the studies were on dasatinib.  So I haven't seen anything that says it can be caused by imatinib, but I'm sure it's a possibility!  These TKIs have such unpredictable and unusual effects.

My lumps were not hard, but rubbery.  They also consistently increased in size and were consistently palpable all day long.  

Good luck!  I hope they can get to the bottom of this.

Best wishes

Martin