I was diagnosed with MCL two and half years ago as my spleen had swollen dramatically. It took about two months of investigation before I was properly diagnosed.
I had chemo for five months originally based on RCHOP added Cytarabine. I had strong side affects losing red, white blood cells and platelets but not fully recovering before the next chemo cycle began .
I had various tests before chemo including an ultrasound of my heart that showed that I was strong enough for the treatment. I was 69. The chemo got me into remission and I stayed in remission for about eighteen months. I relapsed in May when my neck glands swelled and was put in Ibrutinib. I am coping with Ibrutinib but have been told I have Blastoid MCL. It is unlikely that anyone on the group has the blastoid variant but if there is I would like to compare notes.
I was able to get through chemo without blood transfusions using the three available manufactured drugs such as EPO. I refused blood due to my religious beliefs although there also many who refuse blood due to the risks involved. I got through chemotherapy quite well feeling great after but I do understand that some have had a worse experience and even died during chemo.
if anyone has experience of Blastoid diagnosis or Ibrutinib I would like to share experiences.
Philip
