I have smoldering Myeloma. Does anyone have this diagnosis?

Hi @flightdeckjohnn, first I have to ask about your name, FlightDeckJohnn! Did you serve on a aircraft carrier? If so, thank you for your service. That had to be one heckuva an experience. I’d imagine you have a million stories to share.

From what I’m understanding, your wife has smoldering myeloma, which is also called asymptomatic myeloma. It’s a blood disease that progresses very slowly and can be significantly delayed from developing into multiple myeloma with the treatment of Revlimid.

I’m sure it’s troubling for both of you that there’s been a change in her health with the loss of appetite, diarrhea and now these red spots near her ankles. Is she having any swelling/water retention in her legs?

With these new symptoms has your wife been in to see her hematologist/oncologist to determine if there’s been any changes in her myeloma situation?

Do you have any specific questions I can help you with?

my wife is 77yrs old been on 5mg revlimid for 8 yrs,this spring she started loss of appetite,chronic diarrhea,red spots near ankle

I see us here. 😘

@1nan I am encouraged to read there are new treatments being exposed all the time. Even though my IgM myeloma is said to be the more rare type, I will not go down without a fight!
Blessings back to you, also, my friend!
Ginger

@gingerw They don’t call us Myeloma Warriors for nothing. That’s what it takes, we know it, there is reason for hope, and we know it. Blessings, friend.

@1nan Seeing some of the same thoughts already expressed by my oncologist gives me even more confidence in his approach. I know we are waiting to start treatment, because my kidneys are already so compromised. We are warriors with this disease, and to aggressively attack it makes sense.
Ginger

@gingerw That was definitely worth sharing. How did it help you the most? Nancy

Today I received an email from CURE, who posts articles regarding different cancers. As a multiple myeloma patient, that is the focus of the posts I get from them, and today there was a very interesting article, about treatment and remission. This is something to bear in mind when/if your disease progresses into a treatment stage.

Ginger

Hi again. This is a factor that you can make sense of When you know which lab result they reference to answer you. For example, I keep a log of the few results that have meaning to me: hemoglobin, M Spike (protein), kappa free light chain, lamda free light chain, their ratio, and kidney function results. Others may have a different list. When I look at kappa free light chain I see the normal is 0.3300 to 1.94. My last result was 1.14. Pretty much in the middle of normal range. I have asked my doctor what that relationship is to other results so it can make more sense to me. When I was learning about all this, believe me I peppered them with questions. And still do! But this is how we take the mystery out of all that and begin to be our own best advocates. Some sample questions might be, what were you expecting to see?; when you looked at my report what caught your attention?; does this suggest the need for change? And so forth. Regarding your 0.63, the nurse might have been showing you a progress report, that you are seeing progress to reduce the protein they measured. Good, right? Does this help you think about your next appointment? Or even consider a call before then to clarify your interest? Never hesitate to ask if an unknown worries you. You deserve answers.
Hope this helps. Nancy

Yes, thank you....when I question ...what does .62 in mid regionmeans? the nurse said that is amt. of M protein in blood.....it was 1.1 at my primary Dr's originally! So not sure nurse was right.