[cdsParticipant]

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?

[jenniejParticipant]

Hi
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.

[mulberryParticipant]

Welcome jenniej
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.
Best wishes

[katerinelopez0403hotmail-comParticipant]

Hi all,
Nice to meet you.

I am 36, diagnosed with smouldering and I am about to start Zometa next week. What is the reason for this when SMM is supposed to only be watched and no treated? Any advice?

[elsieParticipant]

I am a fit and active 71 year old and diagnosed with SMM earlier this year – i was having blood tests for something else and an anomaly was noticed.
My consultant tells me that i am ‘high risk’ because of the type of protein in my blood but i’m not sure what the difference is. Treatment with Zometa has not been mentioned – i assumed because of my age but i see in this forum that other people my age are being given it. I am told there is nothing to do just now but wait till something bad happens which i find rather frustrating. I live in Scotland and wondered if i should seek a second opinion from the Beatson Centre which i believe is a centre of excellence. Any advice/comments?

[katerinelopez0403hotmail-comParticipant]

Hi Elsie,
I understand that there are some guidelines that doctors use to determine what is the best treatment for you. In my case, I didn’t want to start a treatment but watch and monitor since I am 36 but because I have quite severe back pain, my haematologist recommended to start Zometa to help strengthen the bones.

I am sure your consultant is considering a lot of the side effects that come from the treatments and because you are asymptomatic, they may be considering monitoring for now. I don’t have a lot of experience but that’s what I think.

A second opinion is always good if you want to be reassured.

All the best!!

[leicsladParticipant]

hello elsie
welcome to the smoulderers. i was diagnosed 8 years ago similar circumstances to yourself at the age of 61 i was caught earlier so you can smoulder longer. i have 3monthly checks mainly by phone my paraproteins are around 32 but other numbers are fine. i have occaisional pet scans but i am on no meds other than stand by anti-biotics for chest infections. yes it is frustrating and you think every ailment is myeloma. i do get tired but simple rest. other than that i am fine, just had 1st shingles jab all my covids and feel fine. be happy keep smouldering live life as normal.
i am 70 next time and still smouldering.
steve

[Author]

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