My apologies if anyone else has discussed this.
I was diagnosed with MM in October 2011 and recruited onto the Myeloma XI trial. After 4 cycles of Revlimid, Cyclophosphamide and Dexamethasone my response deteriorated so I received 2 cycles of Velcade, Cyclophosphamide and Dexamethasone. I then received high dose therapy and stem cell transplant being discharged from the ward on July 12th 2012.
I was then randomised onto Revlimid maintenance. Given my previous reduced response I was not initially convinced that this would help. Slowly my Paraprotein went down until July 2014 when it became undetectable. At the same time my serum free light chains also reduced almost to normal. There was, however, one side effect which would seem to influence many patients who have been on Revlimid maintenance for any length of time – Diarrhoea. In the Winter 2014 edition of Myeloma Matters there was an article by Dr Charlotte Pawlyn about this very subject. I seemed to have classic symptoms which might have caused me to withdraw from the trial – something I most definitely did not want to do.
I discussed the matter with my consultant and was prescribed Colesevelam. I take two tablets (each 625mg) twice a day. There is a warning that Colesevelam can influence the absorption of other medications so I take it at breakfast and at lunch. I then take Revlimid on retiring. The effect has been miraculous. No longer does Diarrhoea impact my life style. The stomach cramps have gone as has the urgency.
If you have similar symptoms, discuss them with your consultant. Maybe you will be as fortunate as me. It has now been three years since SCT and my life is almost normal
My very best wishes to everyone.
Steve
AV8R 8 years, 9 months ago.