I have smoldering Myeloma. Does anyone have this diagnosis?

Super late to the party but I was recently diagnosed with smoldering myeloma (still going through testing to determine damage.) Plasma cells at 20%, legion on C3. Dr said I "shouldn't" be having symptoms but I have been for quite some time: intermittent fatigue, weakness, bone pain, back pain and tender at C3, very strange pinpoint sores on knuckles with swelling, numb toes, Reynaud's syndrome, infections that take a long time to heal, and I just woke up in the middle of the night with another tender bump/sore on one of my toes (they tend to pop up during the night).

All the info I find on the 'nets say that there are no symptoms but I feel vindicated that others are experiencing them too. I wonder if people just have super busy lives or get these unusual but easily-dismissed symptoms and don't pay them much mind. ? I have been out of work for a while, no kids, a relatively quiet life so I notice small changes in my body. Hopefully, though, these aren't 'created' by my mental state. If so, wow. How amazing is our physiology?

It's been a very long time since the OP. I am hoping for at least a slow progression and high quality of life to you all.

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.

Zemeta is a medication administered through a drip or bag of fluid I receive every three months to ensure my bones stay stronger. I am with Mayo and feel they are one of the best. I can ask questions through my Patient Portal and get answers. There are also other well-trained staff I can phone, such as a Triage Nurse. You have written that it is nerve wracking, but it does not have to be if you have the right Hematologist and Care Team. Keeping a positive attitude and the LEAST amount of stress is key to getting better. Also diet (cancer loves sugar) , exercise (cancer hates walkers) and regular rest is very important. Pursue your hobbies and if you do not have any, find some good ones. Best success in getting healthier and feeling better.

Follow Mayo Multiple Myeloma for correct and current information. There is other information on the web regarding your illness, but some is not current or correct. Order an information packet about Multiple Myeloma from Mayo Cancer Center and educate yourself. For me it was like returning to college. You need to work with a Hematologist and not just a family doctor . I sincerely hope this helps you.

For some reason my replies are not going where I intend them to go. I tried.

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I've had Smoldering Myeloma for several years. It's slowly getting worse but my hematologist/oncologist says it may never cross the line into Multiple Myeloma. Some excellent people on here and web sites providing accurate information regarding this stage of the disease. Have you had a bone marrow biopsy along with your blood and urine analyses? It may never progress further. Many oncologists do not recommend treatment when one has Smoldering, they believe the side effects can be harsher than the effects of the disease. Plus there is no definitive evidence linking curing/slowing down the disease to treatment at this stage. Best of luck to you.