I was completely unaware of myeloma until 3 months ago.
I had a bone marrow biopsy and a full set of bone xrays.No leisions at all. My oncologist has not prescribed any treatment as yet ,and is watching my blood results.
I just started drinking a glass of Red Wine at dinner because I have heard that it may slow down my cancer (but who knows).
I’m told that i have smoldering multiple myeloma and I dont know what that really means. Is multiple myeloma a quick death ??
Please help me understand how and why i got this desease, and how it will progress.
Thank you
Joey
Forums
5 posts
• Page 1 of 1
Re: Recently diagnosed with smoldering myeloma
Hello Joey,
We're sorry to hear about your diagnosis of smoldering myeloma. Fortunately, many people who have smoldering myeloma stay in the smoldering stage for a very long time.
There have been a number of previous discussions here in the forum about smoldering myeloma, including the prognosis for people diagnosed with the disease. Please follow this link to a list of forum discussions on the topic: http://bit.ly/MxS0jI .
The Beacon also has published a wide range of news articles related to the most recent research findings related to smoldering myeloma. You can see them by following this link:
https://myelomabeacon.org/tag/smoldering-multiple-myeloma/
As you'll see when you read these articles, there is a lot of research currently being done to investigate whether some people with smoldering myeloma should be actively treated. Traditionally, smoldering myeloma patients have not received active treatment for their myeloma. However, there is now some evidence that early treatment of smoldering patients with a high-risk form of the disease may be warranted.
Thus, it might be useful to find out if you fall into this category and, if you do, you will probably want to discuss with your physician whether it would be a good idea to enter a clinical trial testing whether early treatment is useful.
Good luck!
We're sorry to hear about your diagnosis of smoldering myeloma. Fortunately, many people who have smoldering myeloma stay in the smoldering stage for a very long time.
There have been a number of previous discussions here in the forum about smoldering myeloma, including the prognosis for people diagnosed with the disease. Please follow this link to a list of forum discussions on the topic: http://bit.ly/MxS0jI .
The Beacon also has published a wide range of news articles related to the most recent research findings related to smoldering myeloma. You can see them by following this link:
https://myelomabeacon.org/tag/smoldering-multiple-myeloma/
As you'll see when you read these articles, there is a lot of research currently being done to investigate whether some people with smoldering myeloma should be actively treated. Traditionally, smoldering myeloma patients have not received active treatment for their myeloma. However, there is now some evidence that early treatment of smoldering patients with a high-risk form of the disease may be warranted.
Thus, it might be useful to find out if you fall into this category and, if you do, you will probably want to discuss with your physician whether it would be a good idea to enter a clinical trial testing whether early treatment is useful.
Good luck!
Re: Recently diagnosed with smoldering myeloma
The problem i have with your answer to treat smoldering myeloma is : people dont know when they got the desease. It may have been many years before they found out
for the last 3 months my spike and other numbers have not changed . Is that a good sign??
(imjoeypalooka@yahoo.com)
for the last 3 months my spike and other numbers have not changed . Is that a good sign??
(imjoeypalooka@yahoo.com)
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imjoeypalooka
Re: Recently diagnosed with smoldering myeloma
Hi Joey,
To try and answer your questions....No one really knows what causes myeloma. I believe the only established linkage is exposure to Agent Orange in Vietnam. Some have suggested there is a link between other chemcial exposures and myeloma, but nothing has been identified as a definite link.
Many people have myeloma for quite a while before it is diagnosed. EJ was diagnosed only because he had to have emergency surgery. When they did the x-rays prior to surgery they found a plasmacytoma on his ribs, and additional lesions on his hips. The onc. thinks that he may have been smoldering for a long time before he developed myeloma. Looking back at when his rib pain from the plasmacytoma started, we think he may have had it for six years prior to his diagnosis. If EJ had not needed the surgery, the myeloma may not have been detected for another year or two. The blood and urine tests at his annual physicals were all within normal ranges.
Myeloma is a highly individual disease, and for most people it is not a "quick death" as you ask. although there is no cure, there are many, many drugs to combat the disease, and myeloma patients are living longer and longer.
Hope that helps.
Lyn
To try and answer your questions....No one really knows what causes myeloma. I believe the only established linkage is exposure to Agent Orange in Vietnam. Some have suggested there is a link between other chemcial exposures and myeloma, but nothing has been identified as a definite link.
Many people have myeloma for quite a while before it is diagnosed. EJ was diagnosed only because he had to have emergency surgery. When they did the x-rays prior to surgery they found a plasmacytoma on his ribs, and additional lesions on his hips. The onc. thinks that he may have been smoldering for a long time before he developed myeloma. Looking back at when his rib pain from the plasmacytoma started, we think he may have had it for six years prior to his diagnosis. If EJ had not needed the surgery, the myeloma may not have been detected for another year or two. The blood and urine tests at his annual physicals were all within normal ranges.
Myeloma is a highly individual disease, and for most people it is not a "quick death" as you ask. although there is no cure, there are many, many drugs to combat the disease, and myeloma patients are living longer and longer.
Hope that helps.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Recently diagnosed with smoldering myeloma
Evertyhing that you tell me does help me in a mental way,and i appreciate all of your concerns. I only hope that my condition doesnt worsen and i can keep off the drugs
Thank all of you for your replies.
Thank all of you for your replies.
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imjoeypalooka
5 posts
• Page 1 of 1