With Holy Week falling in mid-April this year it brings back memories of my initial diagnosis with myeloma and amyloidosis. I went for a bone marrow biopsy on Maundy Thursday, April 15. That was the final test that led to the surprising news that changed my life. At the time I was in shock and wondered what the future might hold. Eight years have now passed. After a series of treatments with varying degrees of success (autologous stem cell transplant, lenalidomide and bortezomib) I am now in my fifth year on a combination of pomalidomide, dexamethasone and cyclophosphamide. This continues to be very effective in reducing my free light chains and keeping the myeloma and amyloidosis in remission. We have made a couple of changes this year that have been beneficial ...
While the myeloma has been in remission my weakened immune system has struggled to cope with viral and bacterial infections that come in the winter months. Last year I spent nearly three weeks in hospital with a nasty case of pneumonia. In order to boost my immunity I have been receiving monthly IVIG infusions. It certainly seems to have helped as I did not have nearly as many colds as in previous winters and those that did come did not last long.
The other change I made this year was to shift from taking one dose (20 mg) of dexamethasone per week. Instead I have been taking four daily doses in a row at the beginning of each twenty-eight day cycle on pomalidomide. It means that we get the nasty steroid side effects over in the first eight days of the month, leaving three weeks of relative normalcy. I also shift this around during the month, as necessary, if there is something special happening in that first week (a vacation or special family event, for example). Since I have not yet experienced any symptoms of myeloma or amyloidosis it is still the side effects of dexamethasone that cause me the most grief. I would rather it wasn't this way but, given the alternatives, it seems a small price to pay for such effective treatment.
No comments:
Post a Comment