[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?

Is there anyone who has been smouldering and remain smouldering until now?

[mulberryParticipant]

Welcome to the forum.

I’m sorry to hear that you have to live with the worry of a Smoldering Myeloma diagnosis, especially at such a young age.
I hope that you continue to smolder, without it ever progressing to active myeloma.
The more myeloma is tested for, the more people are found to be living normal, healthy lives with asymptomatic MGUS and Smoldering Myeloma. The evidence for this is being seen in Iceland’s IStopMM study, testing all willing adults over 40.

Although everyone with active myeloma will have had, (whether they knew it or not) MGUS then Smoldering Myeloma, not everyone progresses to having blood cancer. I hope that proves to be the case for you.

One of the most damaging things that myeloma does is to disrupt the normal cycle of bone resorption and bone replacement (osteoclasts and osteoblasts) which leads to bone lesions in 80% of myeloma patients.
Zometa is a bisphosphonate, not an anti myeloma drug, but it strengthens bones, in effect disrupting the disruptive cycle.
Zometa remains in the bone (to some extent) for up to 10 years. It will offer your bones a good degree of protection from myeloma related damage. It’s not a totally benign drug, & some patients have suffered a nasty osteonecrosis of the jaw, where the jaw bone flakes pieces off, which then emerge through the gum. However most of the affected myeloma patients have had many more doses over a much longer period, than patients diagnosed in recent years will ever have. (Now that this association is understood).

I found it helpful to drink plenty of water before and after having zometa as the infusion gave me a (short term) metallic taste in my mouth.

Best wishes

[katerinelopez0403hotmail-comParticipant]

Thank you very much Mulberry. This is very useful info.
The zometa went well, I had horrible body aches and headaches the day after the infusion. I never felt that way with a flu, but only lasted a day. Thanks god.
I have quite a lot of pain in my back but that is not new, that’s actually the reason why I started all these investigations and found out about myeloma.
I started to feel quite a lot of pain in my neck as well but I work on a desk all day, so I am thinking that could be related to that.
I feel that every strange thing I feel in my body could be related to this.
I am very positive and I am hoping I stay smouldering and better everyday.

[mulberryParticipant]

I think it’s inevitable that we all are very aware of how we feel, aches and pains can’t be dismissed in the way that they were prior to diagnosis. I wasn’t aware that I had anything wrong when I was diagnosed with active MM. I’ve certainly sought medical advice about bone pain quickly since, rather than waiting to see whether it gets better/worse, and have ended up having two scans over the past few years, which showed arthritic changes/disc compression rather than myeloma (thank goodness). My Dr & the hospital haven’t suggested that I’m a hypochondriac, nor that I’m setting the bar for getting medical opinion too low, so it seems they prefer to over test, than risk missing disease progression.
best wishes
Jane

[katerinelopez0403hotmail-comParticipant]

Hi Mulberry,

Has my second Zometa and didn’t feel anything this time, followed your advice about drinking plenty of water and took painkillers before and after the treatment.
I am booking an appointment Monday with my GP because I have been feeling a mild pain on the right side of my tummy below the last rib, so want to make sure it is nothing, will let you know.

Back pain still bad but manageable, I just came back from a 2 weeks holidays in Spain and Portugal, lots of walks, some days had to stop but I think i managed to do around 15.000 steps in a few of the days. No bad 🙂

Talk soon

[mulberryParticipant]

I’m glad to hear that your second dose of zometa was easier, and that you are getting your pain checked out.
Many people with myeloma (& associated conditions) have to become quite assertive over what they want from their doctors. A good Dr will explain why something is not necessary, if it is not. It is important that you ‘go with your gut feeling’, you are your best advocate.
There is an American woman living in Italy called Margaret who has written a health blog about living with Smoldering Myeloma for nearly 20 years that you may find interesting. It is called Margaret’s Corner and you should be able to find it by doing an internet search.

[kingeParticipant]

Hi,

I hope you remain as SMM and that the Zometa has positive impact going forward.

I was diagnosed with Stage 1 Asymptomatic MM (SMM) 2 years ago at age 44 after being monitored for MGUS since 2017. Being monitored for MGUS got easier as each 6 months passed in that I barely thought about it. I will not be offered any treatment unless I have a myeloma defining event or my ratio drops to 0.01 (currently at 0.03). After seeing your post, I will ask my consultant about Zometa. Maybe my other lab results or type of Myeloma wouldn’t benefit from it? I am classed as ultra high-risk with t(14;16) and Del17p but still on watch and wait or ‘active monitoring’. My consultant is really nice and was honest by saying for me it is not if I progress, but when!

I am similar in that any new pain or discomfort makes me wonder if related but as classed as asymptomatic, however I don’t know what could be relevant or not. I have only started taking notes this month so I don’t forget to mention.

Thanks

[katerinelopez0403hotmail-comParticipant]

Hi kinge,

Zometa has been going well so far but I am actually doing two more infusions, one in June and one in Sep, and then suspending it until I need to start any treatment. This is the result of a second opinion and the new consultant sent me more scans and decided to stop as the recommendation for SMM is watch and wait. He said that starting treatment too early could perhaps increase the SMM time but could cause side effects in the long term. There are some trial doing small doses of chemo but again not sure on the side effects in the long term.
I am okay, but started to feel new pains in my upper back and neck so not sure is the zometa did anything at all. I was told it is suppose to remodel the bone structure but I haven’t noticed any improvement on my lower back pain but instead started to feel other pains in different areas.

I think we are all different and some drugs work different on us. Still Smouldering and hoping to stay like this for a while

[Author]

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