I am a 75 year old male, diagnosed with ‘light chain’ asymptomatic myeloma 3 years ago. After scans, X-rays and a bone marrow biopsy (which indicated a high risk of progression to MM) the Haematologist prescribed Zometa 4mg infused every 4 weeks. Apart from the value of light chains, all other blood counts are just within range and are stable. I have experienced no side effects from having Zometa but have had to pause that treatment to have the root canal of a molar re-filled. Has anyone else experience of Zometa or evidence that it delays the onset of multiple myeloma?
I (64 year old woman) too have been diagnosed with ‘light chain’ asymptomatic myeloma but only 5 months ago. I have also been diagnosed with osteoporosis which they don’t think has been caused by the myeloma but in the light of the myeloma diagnosis I am being treated with 6 monthly Zometa 4mg infusions and had the first in November. I had to have a dental check prior to treatment and experienced no side effects from the Zometa.
I wasn’t aware there was a possibility that Zometa could help delay the onset of MM and had assumed it was all about my osteoporosis.
My experience is so limited that I don’t think it can help you unfortunately but I am interested in how you are doing and any tips you can pass on to me. I am appreciating that Asymptotic (Smouldering) Light Chain Myeloma seems to be relatively rare and haven’t come across much in the literature or anyone else who is experiencing it.
I hope that you will remain smoldering, as some ‘patients’ do for a long time.
It’s thought that all patients with full blown myeloma went through a stage of smoldering before their myeloma caused the damage that required treatment but most of us weren’t fortunate enough to have it diagnosed, monitored and perhaps diverted from becoming active myeloma. Although it will have been very hard receiving your diagnosis, it is heartening to see that people are now being diagnosed before damage is done, and that you are having treatment to prevent that damage.
One of the most common symptoms of myeloma is bone damage caused by both normal bone breakdown and bone repair processes being compromised. 85% of patients have bone lesions at diagnosis and most others develop it at some later stage.
Even myeloma patients who do not have obvious lytic lesions are therefore treated with bisphosphonates (usually zometa), at least over a 2 year period. I believe that zometa remains in the bone for up to 10 years. Now that more patients are living with myeloma as a chronic disease, it seems the optimal balance between the risks of osteonecrosis of the jaw ( the most feared side effect) and the benefits of stronger bones isn’t yet known, so it seems it is a matter for individual drs to balance risks for individual patients.
There is a blog written by a patient who has had smoldering myeloma for the past 18 years, Margaret’s Corner (on Facebook & on her own blog page). You may find some of the things she has tried useful.