I am meeting my consultant this Friday. I have been in remission for about eighteen months but about two years since I was first diagnosed with MCL.
I now have, what to me feels like, a table tennis ball growing under my right ear. I had an ultrasound last week and they were able to tell me that I also have other swollen glands there: “a cluster”. I don’t have the same symptoms as two years ago. My spleen is not swollen so I can’t still eat; nothing wrong with my appetite and my weight is stable. I didn’t lose any weight last time until after the first lot of chemo.
The main issue I have is I am tired all the time. If I do anything approaching strenuous I have to go lie down after.
As I have MCL I knew it was going to relapse some time. I didn’t get offered the transplant probably as I was too old just lots of chemo that I was warned could have killed me but I came through relatively unscathed except for numb toes.
The next phase as I understand it is to be put on some medication which I am guessing is going to be Ibrutinib. I am wondering if the side-affects affect everyone or are they are as bad as some say?
Will update you after Friday.
PhilipM
