Dear John
Thank you for posting on the Myeloma UK Discussion Forum. I am sorry that you haven’t had any replies to date – I am sure you will be hearing from others in the near future. My name is Debbie and I am one of the Myeloma Information Specialists here at Myeloma UK.
You haven’t mentioned in your post whether your wife is on active treatment for her myeloma or whether she is in remission or ‘plateau’ (a period of time when the myeloma, and the paraprotein level, is relatively stable).
Either way there is no reason to suspect that stopping pamidronate will lead to her myeloma getting worse. Pamidronate (Aredia®) is a supportive drug rather than an anti-myeloma treatment. It is primarily given to help prevent bone damage that can be caused by myeloma. At the moment there is variation across the country in terms of how long patients stay on this drug for. The NICE (National Institute for Health and Care Excellence) guidelines for the diagnosis and management of myeloma patients (2016) recommend that this drug (described as a bisphosphonate) is given for a minimum of two years. Thereafter there is much variation according to doctor/patient preference. Some patients automatically stop taking the bisphosphonate after the two year period and then it is resumed when their myeloma becomes active and requiring further treatment (relapse). It is very important that the drug is stopped if there is evidence of ONJ as in your wife’s case.
I hope that this reply has answered your question and will provide some reassurance to you both but please do consider calling the Myeloma Infoline if either of you would like to clarify the situation or to answer any other questions you may have. Ellen, Jude and myself take calls on the Infoline – 0800 980 3332 – and we will be happy to discuss this with you if you think that will be helpful.
With best wishes
Debbie Gardiner
Myeloma Information Specialist
