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Smoldering multiple myeloma now bone lesion on skeletal survey ?'s
I am posting on behalf of a dear friend I met through FB when both of our husbands were going through treatment for colon cancer. Her husband, in his early 60's, was diagnosed in August 2010 with Smoldering Asymptomatic Multiple Myeloma. The dr. said this dx had nothing to do with his colon cancer which at present is showing NED. With his initial SMM dx he was to get blood work every 3 months, skeletal surveys/CT scans yearly. No progression in his disease at follow up visits/tests. In June of 2012 he showed slight anemia and skeletal survey was good. B-Complex for the anemia. Just last week his multiple myeloma numbers had increased (I am not sure what numbers, but assume she means blood tests). A skeletal survey done shows one lesion on his upper left arm. An MRI has been ordered. I've told her to remain positive...one lesion was found, not numerous. I've told her to wait for the MRI results and go from there. Worry can put one's mind in places it may never need to go. Can anyone offer some encouraging posts/stories that I could pass along to her. Perhaps, some idea of what the next steps would be and some thoughts from those who are in the same boat.
Re: Smoldering multiple myeloma now bone lesion on skeletal
Hi axa2008k,
Your friend is lucky to have someone such as yourself who is so concerned about her and her husband's wellbeing.
It sounds from what you've described that your friend's husband's myeloma has progressed to the symptomatic stage. He already has had anemia, which itself is a sign of active myeloma, but the bone lesions are yet another indication that his disease is no longer smoldering.
Before your friend's husband makes any treatment decisions, it is very important that he see a myeloma specialist, preferably at a reputable cancer treatment center. Myeloma is not that common, so a local hematologist/oncologist doesn't necessarily see many myeloma patients each year. A myeloma specialist at a major cancer center, on the other hand, will see myeloma patients day in and day out, and also will be up-to-date on new treatments and options such as clinical trials.
Just as importantly, a specialist is more likely to probe carefully to determine exactly how aggressive your friend's husband's myeloma is. That's important because it can affect which treatment will be the best option.
As for encouraging words, all you have to do is look around here on the forum, and at the patient's who write columns for this site, to see that there are plenty of people with active myeloma who are leading active lives, and have been doing so for quite a while.
Yes, having myeloma is challenging (to say the least!). But there are more and more treatments which are turning the disease into one which, for many patients, can be controlled for a very long time.
I wish your friend and her husband all the best, and encourage them to ask questions here and also share what they are going through. As many people here will point out, knowing more about myeloma is a huge help when you're fighting the disease.
Your friend is lucky to have someone such as yourself who is so concerned about her and her husband's wellbeing.
It sounds from what you've described that your friend's husband's myeloma has progressed to the symptomatic stage. He already has had anemia, which itself is a sign of active myeloma, but the bone lesions are yet another indication that his disease is no longer smoldering.
Before your friend's husband makes any treatment decisions, it is very important that he see a myeloma specialist, preferably at a reputable cancer treatment center. Myeloma is not that common, so a local hematologist/oncologist doesn't necessarily see many myeloma patients each year. A myeloma specialist at a major cancer center, on the other hand, will see myeloma patients day in and day out, and also will be up-to-date on new treatments and options such as clinical trials.
Just as importantly, a specialist is more likely to probe carefully to determine exactly how aggressive your friend's husband's myeloma is. That's important because it can affect which treatment will be the best option.
As for encouraging words, all you have to do is look around here on the forum, and at the patient's who write columns for this site, to see that there are plenty of people with active myeloma who are leading active lives, and have been doing so for quite a while.
Yes, having myeloma is challenging (to say the least!). But there are more and more treatments which are turning the disease into one which, for many patients, can be controlled for a very long time.
I wish your friend and her husband all the best, and encourage them to ask questions here and also share what they are going through. As many people here will point out, knowing more about myeloma is a huge help when you're fighting the disease.
Re: Smoldering multiple myeloma now bone lesion on skeletal
Ricardo's comments are right on the money. I'd really suggest seeing a couple of multiple myeloma specialists from different institutions that live and breathe this disease and ideally have different treatment philosophies.
I am smoldering as well and I am on a trendline where I may likely require treatment in 1-2 years. For me, really understanding the disease and talking to a number of specialists with different treatment philosophies truly made a big difference for me. Knowing my particular circumstances, I've tentatively mapped out a general approach to my treatment should I become symptomatic and I've already discussed this with my docs and have their buy-in. Understanding this treatment approach upfront has allowed me to become far less emotional and worried about the whole process. Could things change depending on which way this disease turns in the future? Sure, but for now I am comforted with a Plan A approach.
I am smoldering as well and I am on a trendline where I may likely require treatment in 1-2 years. For me, really understanding the disease and talking to a number of specialists with different treatment philosophies truly made a big difference for me. Knowing my particular circumstances, I've tentatively mapped out a general approach to my treatment should I become symptomatic and I've already discussed this with my docs and have their buy-in. Understanding this treatment approach upfront has allowed me to become far less emotional and worried about the whole process. Could things change depending on which way this disease turns in the future? Sure, but for now I am comforted with a Plan A approach.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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