Hi
Sympathise with what you are going through. I have just completed cycle 7 of IRD. I too have very aggressive myeloma. Stem Cell transplant lasted 9 months. My paraprotein almost doubled on first line treatment DVD. IRD is working. Paraprotein neglible for moment. During initial treatment with dex, my bowel ruptured and I now have a stoma. My problem is, I have suffered from severe diarrhoea from the start. But this last month my stoma has been filling with pure liquid at least 6 times a day. I have resorted to rubber pants, bath sheet on bed and old clothes. Just come out of hospital. My neutrophils are 1.5 despite 3 injections a week and my potassium was so low when I went for weekly platelets and haemoglobin (SCT resulted in engraftment failure, hence bloods) that I was admitted for 8 hour infusion as was in danger of cardiac arrest. Have tried very hard over last 2 years but am really struggling now.
How on earth you manage the role of carer is totally beyond me. Please be extremely proud of yourself.
But I just wanted to say, you are not alone. When I read your post, I thought it could have been written by me. I so desperately need an answer to my stoma problem. I just want to eat again without fear.
Take care, this is such a horrible condition.
