I have smoldering Myeloma. Does anyone have this diagnosis?

Posted by Debbie @debbie1, Jul 10, 2011

Multiple Myeloma- I have smoldering Myeloma. Does anyone have this diagnosis?
Does anyone have an abnormal protein in their blood , which is a precursor to Multiple Myeloma. My Oncologist has said this could go on for years, or could or suddenly change

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

I am being followed for possibley developing multiple myeloma. I have bone scans every three months & see the oncologist.

REPLY

I have gone from having MGUS to now Smoldering Multiple Myeloma. I have labs every 3 months. My IGG is slowly climbing . Had been is low 2000 range-now is at 3597. I have low back pain and slight anemia. Otherwise I work full time as ER Nurse Manager at our hospital. Anyone esle with similar story?
Connie

REPLY
@helenh

I am being followed for possibley developing multiple myeloma. I have bone scans every three months & see the oncologist.

Jump to this post

Helen why so do you say possibly. What is your oncologist telling you? I have Stage I MM and I am going to the oncologist every month for bloods. Bone scans are good , but what shows the best results are two other tests. 1. Pet Scan
2. Mri with and without contrast. Just ask your doc and see what he says.
May I ask where you are seeing you oncologist and who it is. I see Dr. Peles at the Palm Bech cancer Institute.

REPLY
@rnconnie23

I have gone from having MGUS to now Smoldering Multiple Myeloma. I have labs every 3 months. My IGG is slowly climbing . Had been is low 2000 range-now is at 3597. I have low back pain and slight anemia. Otherwise I work full time as ER Nurse Manager at our hospital. Anyone esle with similar story?
Connie

Jump to this post

Hi-great to get your feedback. Sounds like your in about the same boat as me. I just talked to the oncologist today as I had MRI done last week. It does not show any lesions-just osteo. So I am thankful for that. At first he said if my IGG got over 3000 I would need treatment. That happened about a year and half ago. So he consulted with a doctor at the Mayo clinic-and the Mayo doctor told him since I am doing well clinically (I feel good-some anemia, kidneys are good, etc. ) that he wants to hold off any treatment. So -that is where I am at. It is nerve racking-I agree-especially if a new symptom pops up and you think-is this something I should tell my doc or not. But-since I feel pretty good-I am thankful. I cope by trying to stay positive and look at how well I am doing. This is so nice-being able to talk back and forth with someone who can understand and is going thru similar problem. Let’s keep in touch . I had the once a year med for the bones-IV-can’t think of the name right off hand. Thanks for your reply.

REPLY
@helenh

I am being followed for possibley developing multiple myeloma. I have bone scans every three months & see the oncologist.

Jump to this post

My oncolpgist said as of my last blood tests-no myeloma but am at high risk. I have lab tests again in Dec & another bone survey.I hope I don’t have any more lytic lesions other then the one I had removed by surgery & then radiation to the site. I also had what they called a collection of cells on my sacrurm treated with radiation & the repeat bone scan could not find them. This is all new to me & I plan on attending a support group in Dallas this Sat who has a specialist scheduled to speak.

REPLY

Hello, after reading these posts, I realize I’m really not alone. In the 2 yrs since I’ve been diagnosed with MGUS, my abnormal protein went from 0.4 to 2.6, when I reach 3.0, I can start chemo.
As for pain, there’s sooo much of it, but am not sure if it is MM or osteroarthritis or degenative disc disease of my spine. which also has dextrorotary scoliosis, I am fused from L3 to S1, and from C3 to C7, Also had my 2nd BoneMarrow biopsy, awaiting results to find out if it’s now Smoldering MM. The waiting and not knowing are not kind to the mind or body.
I’m wishing everyone a Sunny Day, Donna

REPLY

Hello Anonymous, Multiple Myeloma is a cancer of the plasma cells of the bone marrow, while Amyloidosis is a condition in which myeloma light chains (Benz Jones proteins) are deposited in tissues and organs throughout the body. This occurs more commonly with lambda versus kappa Bence Jones proteins. In patients with amyloidosis, the light chain proteins bind to certain tissues such as eart, nerves and kidney rather than being excreted out of the body through the kidneys.
I will find out next week if I’m starting Smoldering Myeloma. Just had my 2nd Bone Marrow biopsy last week. The waiting and not knowing are not kind to the mind or body, …..Anonymous, I wish you a Sunny Day. Donna

REPLY

I am a daughter of a father who had MM many years ago, and was not being treated with the advanced tx’s they have today, and yet he lived many many years with the MM.What he eventually developed was the Amylodosis.What really is surprising to me, as a nurse, it that most of our patients w/MM were males in their 7 th decade of life. Never had a young female as a patient. Good luck to you all! With all the advances you can survive with this type of Ca for many years.

REPLY

I have just been diagnosed with Smoldering Multiple Myeloma, I don’t have any symptoms except fatigue and some back pain (I have had 2 back surgeries for other reasons) so, I don’t know if the back pain is related or not. My bone x-rays and scans all are good along with my kidney function being good. Does anyone have any experience with issue, I really wonder how long it takes to go from smoldering to active. My doctor here is not treating me at all – just doing blood tests every 3 months. I am going to get a second opinion from Mayo Clinic too. Any help would be appreciate

REPLY
@steppjudy

I have just been diagnosed with Smoldering Multiple Myeloma, I don’t have any symptoms except fatigue and some back pain (I have had 2 back surgeries for other reasons) so, I don’t know if the back pain is related or not. My bone x-rays and scans all are good along with my kidney function being good. Does anyone have any experience with issue, I really wonder how long it takes to go from smoldering to active. My doctor here is not treating me at all – just doing blood tests every 3 months. I am going to get a second opinion from Mayo Clinic too. Any help would be appreciate

Jump to this post

hello…your story sounds almost identical to mine. I believe I have the IgA type…I would like to further talk with you if you are willing.

REPLY
Please sign in or register to post a reply.