Smouldering myeloma

Hi, I also have smouldering myeloma, and was diagnosed 5 and a half years ago. I haven’t had to undergo any treatment and am monitored every 3 months too. 
My paraprotein level was 15 when I was first diagnosed, but I regularly take Curcumin, now my paraprotein level is 3. I also take Vitamin D daily, watch what I eat, and try to exercise regularly, and avoid alcohol.

My other blood counts are all OK, apart from my kappa light chain count, but that’s not affecting me in any way.

I find it to be stressful when my consultant appointment comes around, and obviously worry in case my levels start to increase but as time goes on, I worry less and am more positive about my diagnosis. So much so, I had a telephone consultation with my consultant this afternoon, and completely forgot he was going to call me!

My advice would be to try and find out as much information as you can about your blood counts, which are high and try and counter them, if possible.

It’s a weird situation, you are diagnosed with a form of cancer but it’s not serious enough to need treatment! 
From what I understand, not everyone with smouldering myeloma goes on to get Myeloma and the treatments that involves, so, please try to stay positive!

Ann69

Thank you so much!  To hear about your experience, how well you’ve been dealing with it and what you’ve achieved over the last 5 plus years has given me hope  

I can’t explain how much your response has helped and it has certainly enabled me to feel more positive for the future.

I’ve just had blood tests before seeing my consultant later this month and I know that’s what prompted me to join this online community at this time. I’m so glad I did. 

I use a high dose vitamin D spray daily anyway because, like many women, my vitamin D levels were low.  They’ve improved over the years. My next step is to look at curcumin.  We used to walk a lot but have done so less and less over the past year. Funnily enough we began walking again last week and are determined to keep it up.  I don’t drink much alcohol at all, but can look to cutting it out altogether once I’ve done more research. 

My paraproteins and serum lipids are high but I’ve been told I’m at the low end of risk.  You really did hit the nail on the head by saying how strange it feels to be told about cancer yet not treated.  I have also struggled with the incongruence of being told I do not have cancer though there’s a high chance I will develop myeloma within the next 5-10 years. All very confusing when everything I read refers to it as cancer.  Meeting a MacMillan nurse and being offered their support tells me it is cancer. As I say, confusing, yet I feel I’ve got my head around it now. 

Once again, thank you, for your response and support. I really appreciate it. 

Serum light chains, not lipids!

Serum light chains not lipids!

I’m very happy that I’ve been able to help you. Others have helped me in the past, so it’s great that I can do the same for someone else.
As far as the curcumin is concerned, I was advised to use the Dr Best brand. I take one 1000mg tablet daily. I have been told it doesn’t help everyone, but it’s definitely helped me!

THANK YOU. 

I had no experience of smouldering myeloma, but you mentioned travel insurance. Obviously this is a topic that crops up a lot on Macmillan forums. Travel insurance reviews are here:

community.macmillan.org.uk/.../travel-insurance-forum

Thank you. That’s really helpful. 

Hi Jom My story is almost identical (except for a spouse). It hasn't really sunk in yet and it's really not something I think about every day. Initially I was misdiagnosed with MGUS but then they got the final result from the extracted bone and changed the diagnosis to positive. I'll add posts here as I learn more and will try to offer support to others.

Hello Mike

Thank you for adding your experience.  I don’t think about it everyday either, but as I have my first monitoring appointment next week, it’s very prevalent  right now.  I’m waiting for results from my latest blood tests so having a nail-biting time. 

As I don’t have any symptoms, nothing has changed….and yet it has. Maybe that makes sense to you too?