Good morning everyone
Today I am starting on imatinib for the first time after nearly 3 years on dasatinib. The reason is that, although I reached MMR on dasatinib after a relatively slow response, I experienced a weird side effect that has been seen very rarely - swollen lymph nodes on one side of my neck that look like follilicular lymphoma but have been proven to be reactive by biopsy. I'm writing this thread for two main reasons - (1) to document my thoughts as I prepare to embark on this journey and (2) to give others who may be new to treatment some assurance that they are not alone if they can identify with these thoughts!
I have spent the last month on holiday, travelling to the Caucasus (Georgia and Armenia) and enjoying my life in preparation for this big day. It was surprisingly easy to put CML out of my mind for the past few weeks, but, on boarding the plane back to South Africa, it suddenly all came rushing back. I have spent the last few days of April reading about all the side effects that people experience on imatinib and, quite frankly, it is terrifying: puffy eyes, bone pain, nausea, diarrhoea, muscle cramps, rapid weight gain, swollen feet... the list is endless... and I can remember how I felt when taking my first dasatinib tablet. It is as if one's life will never be the same again and the fear of the unknown is great: which side effects will come? When will they make their appearance? How can they be managed and how bad will they be? And which ones will hang around for ever, like unwelcome house guests, and which will disappear? The uncertainty is dreadful. Furthermore, there is an even more important concern: will the drug work and will it be able to keep this disease at bay?
One of my biggest fears is that imatinib will change my appearance forever, and I am in dread of the puffy eyes and rapid weight gain. I believe I can handle most of the other side effects, but this one is huge for me. Unfortunately the dasatinib changed my hair colour to grey almost overnight, and I eventually got used to the insensitive and careless comments that people throw around regarding one's appearance. It isn't out of vanity, but rather because seeing one's appearance change is a daily reminder that one is living with a very serious disease.
I am also worried about the fatigue - as an unmarried, nearly 40-year-old man with very few family members, I really have only my work, which I love. On dasatinib I was able to work my normal day, but I found that I often had lapses in concentration as I became tired. It is also difficult because this disease is expected to be so "mild" - so many people say that we are lucky to have CML and not one of the other cancers. Furthermore, some people see me at work and say, "Is the cancer gone yet?" or "When are you stopping treatment?" Being on chronic medication isn't easy, but at the same time we have so very much to be grateful for - without these wonderful drugs, I know that I would be dead by now!
Good luck to everyone and thank you so much for all your support throughout the three years that I've been on this forum. Just having this space to write, to read others' experiences and even to vent when necessary is an enormous help.
Best wishes for your continued recovery.
Martin