1. < Blood Cancers & Disorders

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

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smiles1951 | @smiles1951 | Jan 9 10:36am
In reply to @brokendoll "Super late to the party but I was recently diagnosed with smoldering myeloma (still going through..." + (show)
@brokendoll

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.

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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.

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1 reply
Mentor
Patty, Volunteer Mentor | @pmm | Jan 9 10:45am

@smiles1951
Lots to feel good about here. I’m so glad that your treatment has been so successful. The part that really made me smile is the part about being too busy to write frequently. That is the measure of success. So glad you are feeling well and productive!
Patty

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smiles1951 | @smiles1951 | Jan 9 2:16pm
In reply to @rnconnie23 "Hi-great to get your feedback. Sounds like your in about the same boat as me. I..." + (show)
@rnconnie23

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.

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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.

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1 reply
smiles1951 | @smiles1951 | Jan 9 2:17pm
In reply to @smiles1951 "Zemeta is a medication administered through a drip or bag of fluid I receive every three..." + (show)
@smiles1951

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.

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

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1 reply
brokendoll | @brokendoll | Jan 9 4:07pm
In reply to @smiles1951 "Follow Mayo Multiple Myeloma for correct and current information. There is other information on the web..." + (show)
@smiles1951

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.

Jump to this post

Yes, I have been doing a lot of reading and have only worked with a hematologist. It's a little frustrating that he mostly just wants to tell me I don't have MM (and isn't that great?? No, not really, just means I have no real cause or place to begin to explain my symptoms or why my free light chains are through the roof). But he has me on follow up care to see if this progresses into MM and has also offered to have me join a clinical trial. That means I have to get labs every month instead of every two but that's okay (my local lab tech is kind of a hottie so there's that 🙂 )

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Mentor
Lori, Volunteer Mentor | @loribmt | Jan 9 4:38pm
In reply to @smiles1951 "For some reason my replies are not going where I intend them to go. I tried." + (show)
@smiles1951

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

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Hi @smiles1951 If you’re directing your replies to a specific person, just make sure their @name appears somewhere in your message.
If you are replying in response to a posting from someone, simply click the blue oval that says Reply in the comment itself. It will open a blue frame where you can type your reply. Then the person who wrote it will be notified and their name will also appear in your reply.

However, if you go to the bottom of the page and type a comment, if you don’t address anyone specifically, then it will not notify anyone in particular.

Where do you wish your replies to go that landed in the wrong place?

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1 reply
smiles1951 | @smiles1951 | Jan 10 7:41am
In reply to @loribmt "Hi @smiles1951 If you’re directing your replies to a specific person, just make sure their @name..." + (show)
@loribmt

Hi @smiles1951 If you’re directing your replies to a specific person, just make sure their @name appears somewhere in your message.
If you are replying in response to a posting from someone, simply click the blue oval that says Reply in the comment itself. It will open a blue frame where you can type your reply. Then the person who wrote it will be notified and their name will also appear in your reply.

However, if you go to the bottom of the page and type a comment, if you don’t address anyone specifically, then it will not notify anyone in particular.

Where do you wish your replies to go that landed in the wrong place?

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Thx

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jefe | @jefe | Jan 15 8:42am

I was diagnosed with smoldering myeloma in 2017 at Mayo Rochester. No symptoms. It was found upon testing for neuropathy. I was on Revlimid and Dexamethasone for a year. Then added Daratumumab for three years . My numbers started to rise. They wanted me to come in weekly for infusions. I chose a stem cell transplant instead last March. I currently am MRD negative on Pomalyst. I question whether I started therapy too early. I wonder if I should have gotten the stem cell transplant earlier. I have never had symptoms. There are a lot of questions when it comes to smoldering myeloma. I am just glad that it was caught early and I didn’t wait for my body to fall apart before it was detected and treated.

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richardab | @richardab | Jan 16 10:31am

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.

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1 reply
mascot | @mascot | Jan 17 10:31am
In reply to @richardab "I've had Smoldering Myeloma for several years. It's slowly getting worse but my hematologist/oncologist says it..." + (show)
@richardab

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.

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Hi Richard,
May i ask which type?
I have IGG with lambda light chains and my ratio is 0,04.
Lambda is 282
BM 20%
Scared somewhat.
How did your numbers go?
Regards
Mascot

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