Blood protein level with asymptomatic myeloma

Hi JenksB. Are you referring to your paraprotein level? I too have asymptomatic myeloma, my paraprotein count was 15 when I was first diagnosed 4 years ago. It is now down to 8. My consultant has told me that every one is different, so there’s no golden rule as to when you should start treatment. It depends on other factors too. For example, if you have kidney problems, constant infections or bony pain. Also, they take into consideration the rest of your blood counts too. It’s all very complicated, I feel we all need to go to medical school to learn all the complexities of this condition! I have been taking curcumin for three years and am convinced that has lowered my paraprotein level, and is keeping me from having to start treatment. Hope this helps!

Hi,

I have just been diagnosed with SMM this week and have been looking for positives and came across your thread. My paraprotein levels are at 12 but I'm looking at taking curcumin too, everything is so confusing and I was wondering if my protein falls below 10 taking the curcumin would that mean I would fall under MGUS ? I feel like all the information out there is a bit of a minefield.

Welcome to the forum, Manifesto.

It can be desperately confusing - and traumatic - to be diagnosed with SMM. Most people on this forum have SMM or active MM, or are carers for those of us who have these conditions. You are not alone!

There are many people on this and other forums who can explain things and talk about their experiences.

This is from Chat-GPT:

"Once someone meets SMM criteria, they don’t go "backward" to MGUS, even if the lab values improve temporarily (e.g., due to treatment or variability). It would still be classified as smouldering myeloma in remission or with stable disease, not MGUS."

If/when the SMM becomes active, there are many effective treatments, and the number is increasing all the time. People with active MM can get on with their lives these days for a long, long time!

I won't pretend to you that it is always easy, the treatments can have side effects, but (for example) I live an enjoyable life, nearly 3 years after being diagnosed with active MM.

Hi

When I posted the message you have replied to, my paraprotein level had gone down to 8, its now down to 3.

My consultant is convinced it is because I take curcurmin as I have had no treatment so far.

Im sure I shouldnt recommend a particular brand, but I was advised to take Dr Best curcurmin. You can get it from the US from a company called iherb. I take 1500mg per day. The upper level that they recommend taking is 2000mg per day, so I am still under that threshold.

My consultant has said to me that if were to come to them now and was to be freshly diagnosed, I would be diagnosed with MGUS, but as I had already been given a diagnosis of SMM, it cannot be changed.

Since taking the curcurmin, as well as it has reduced my paraprotein levels, I have had no infections - something which I was getting regularly before taking it. I am healthy, and it has allowed me to get on with my life, without constantly worrying if the cancer is progressing or not. Obviously, I cannot see what will happen to me in the future, but for now, I am just getting on with life.

I do hope I have been able to give you a little ray of hope, I remember all too well how daunting and scary it is when you are first diagnosed. Good luck and please keep us updated as to your progress!