[BeemerParticipant]

Two weeks ago I was diagnosed with Asymptomatic Myeloma. I'm waiting for a letter giving me my first monthly "for ever" infusion of Zoledronic acid. I have started to take Calcium Carbonate tablets.

I'll lurk awhile here to learn from others.

BTW I'm a 65year old male.

[docmikeParticipant]

hi beemer.
welcome
you can learn a lot from lurking and reading the previous messages on smouldering /asymptomatic myeloma. I assume you having zolendronic acid to treat pre existing osteoporosis?
mike

[tomParticipant]

Hi Ian
And a welcome from me, and Lurk and ask anything you feel you need to, pull up the chair and get comfy.

Tom "Onwards and Upwards"

[BeemerParticipant]

Mike,

I have been having blood tests for the last seven years but recently after too high protein now found in urine I had another bone marrow extraction.

No pre-condition of osteoporosis.

[BeemerParticipant]

Tom,

Thanks for the welcome. Its been a bad year as my wife had to have a kidney removed because of cancer. She seems fine now but now we both have Swords of Damocles hanging over us 🙁

[docmikeParticipant]

dear beemer ,
Are you on a new clinical trial for treatment of myeloma?
mike

[BeemerParticipant]

Mike,

Not a trial afaik but I'm curious why you ask this?

[docmikeParticipant]

dear beemer ,
zometa is used either for myeloma bone disease and/or osteoporosis (see information on this Site) but not for asymptomatic /smoldering myeloma afaik.However it has been shown to improve outcome in mm over and above its bone healing action So it is not a bad thing to be on ?prophylactically .But Im not sure about the calcium supplements in view of risk of hypercalceamia later in mm and concern about heart attacks on calcium ?? unless you have a low calcium?
Might be worth checking exactly why you are on these medications when you go for your infusion .
mike

[jmsmythParticipant]

Hi Mike

My husband was diagnosed with SMM in Sept 2006. Straight away consultant started him on Zometa once a month for 2 years. She then stopped it. Years later I asked her if Frank would go back on it and she said that as he was still smouldering he would not have it as thinking had changed about giving it to SMM patients. He is now back on it as treatment started in June.i wondered if giving him Zometa at beginning was the reason he smouldered for 6 years.

Regards
Jean

[docmikeParticipant]

Hi Jean,
Very interesting and posibly a correct theory but i have not seen any publications on this to confirm ; but may go back to review
All smolderers are always on the lookout for preventative treatment !!!
As it happens, I have osteopenia and was refered specifically to a national bone centre who use zometa, but there was no recomendation for treatment in my case for either of my conditions .
mike

[BeemerParticipant]

Mike,

(Subject line edited to correct my spelling of Myeloma)

Confusion over text both in journals and here in this forum mentioning Myeloma and then Multiple Myeloma in the same topic and even in the same paragraph. Some folk also use the term SMM which is in my understanding an oxymoron. I could be wrong but my understanding is:

"Smoldering myeloma" = asymptomatic myeloma (no organ damage)
MM = Multiple Myeloma (a more serious condition)
SMM = no such thing

If I am incorrect I hope someone will advise

Ian

[BellaRSParticipant]

SMM = smouldering multiple myeloma

Basically it is all in stages strting with MGUS, then SMM and finally MM; however only some get diagnosed early at MGUS or SMM stage.

Asymptomatic multiple myeloma is a bad term as it could mean SMM (lower levels compared to MM and no symptoms), or it could mean that the patient has levels normally seen with full-blown MM but for some strange reason has no symptoms/effects.

Bella

[BeemerParticipant]

Bella,

Yes I agree with your explanation. I can only go with the term that my consultant wrote down which was Asymptomatic Myeloma.

Ian

[docmikeParticipant]

hi ian
It is very confusing and asymptomtic myeloma could represnt either smoulderimg(multiple) myeloma(SMM) or the early phase of multiple myeloma without symptoms even though tests would show [u]signs[/u] that confirm that diagnosis ; In particular silent bone(B) lesions. Renal failure (R), Hypercalceamia(C) and anaemia(A) usually produce symptoms .In smo(u)ldering myeloma the 4 signs(crab) are absent and serial tests in the short term (over a few weeks)show no evidenc of progression .
Mike

[Author]

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