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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Today I received an email from CURE, who posts articles regarding different cancers. As a multiple myeloma patient, that is the focus of the posts I get from them, and today there was a very interesting article, about treatment and remission. This is something to bear in mind when/if your disease progresses into a treatment stage.
https://www.curetoday.com/view/myeloma-the-first-remission-is-the-deepest
Ginger

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@gingerw

Today I received an email from CURE, who posts articles regarding different cancers. As a multiple myeloma patient, that is the focus of the posts I get from them, and today there was a very interesting article, about treatment and remission. This is something to bear in mind when/if your disease progresses into a treatment stage.
https://www.curetoday.com/view/myeloma-the-first-remission-is-the-deepest
Ginger

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@gingerw That was definitely worth sharing. How did it help you the most? Nancy

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@1nan

@gingerw That was definitely worth sharing. How did it help you the most? Nancy

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@1nan Seeing some of the same thoughts already expressed by my oncologist gives me even more confidence in his approach. I know we are waiting to start treatment, because my kidneys are already so compromised. We are warriors with this disease, and to aggressively attack it makes sense.
Ginger

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@gingerw

@1nan Seeing some of the same thoughts already expressed by my oncologist gives me even more confidence in his approach. I know we are waiting to start treatment, because my kidneys are already so compromised. We are warriors with this disease, and to aggressively attack it makes sense.
Ginger

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@gingerw They don’t call us Myeloma Warriors for nothing. That’s what it takes, we know it, there is reason for hope, and we know it. Blessings, friend.

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@1nan

@gingerw They don’t call us Myeloma Warriors for nothing. That’s what it takes, we know it, there is reason for hope, and we know it. Blessings, friend.

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@1nan I am encouraged to read there are new treatments being exposed all the time. Even though my IgM myeloma is said to be the more rare type, I will not go down without a fight!
Blessings back to you, also, my friend!
Ginger

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@gingerw

@1nan I am encouraged to read there are new treatments being exposed all the time. Even though my IgM myeloma is said to be the more rare type, I will not go down without a fight!
Blessings back to you, also, my friend!
Ginger

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I see us here. 😘

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my wife is 77yrs old been on 5mg revlimid for 8 yrs,this spring she started loss of appetite,chronic diarrhea,red spots near ankle

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@flightdeckjohnn

my wife is 77yrs old been on 5mg revlimid for 8 yrs,this spring she started loss of appetite,chronic diarrhea,red spots near ankle

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Hi @flightdeckjohnn, first I have to ask about your name, FlightDeckJohnn! Did you serve on a aircraft carrier? If so, thank you for your service. That had to be one heckuva an experience. I’d imagine you have a million stories to share.

From what I’m understanding, your wife has smoldering myeloma, which is also called asymptomatic myeloma. It’s a blood disease that progresses very slowly and can be significantly delayed from developing into multiple myeloma with the treatment of Revlimid.

I’m sure it’s troubling for both of you that there’s been a change in her health with the loss of appetite, diarrhea and now these red spots near her ankles. Is she having any swelling/water retention in her legs?

With these new symptoms has your wife been in to see her hematologist/oncologist to determine if there’s been any changes in her myeloma situation?

Do you have any specific questions I can help you with?

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@loribmt

Hi @flightdeckjohnn, first I have to ask about your name, FlightDeckJohnn! Did you serve on a aircraft carrier? If so, thank you for your service. That had to be one heckuva an experience. I’d imagine you have a million stories to share.

From what I’m understanding, your wife has smoldering myeloma, which is also called asymptomatic myeloma. It’s a blood disease that progresses very slowly and can be significantly delayed from developing into multiple myeloma with the treatment of Revlimid.

I’m sure it’s troubling for both of you that there’s been a change in her health with the loss of appetite, diarrhea and now these red spots near her ankles. Is she having any swelling/water retention in her legs?

With these new symptoms has your wife been in to see her hematologist/oncologist to determine if there’s been any changes in her myeloma situation?

Do you have any specific questions I can help you with?

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she had a stem cell transplant2012 for multiple myeloma been in remission since,been on 5 mg since. Is it possible after8 yrs to start getting side effects from revlimd?

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@flightdeckjohnn

she had a stem cell transplant2012 for multiple myeloma been in remission since,been on 5 mg since. Is it possible after8 yrs to start getting side effects from revlimd?

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You’re wife has been through a great deal with her MM history. Was she able to use her own cells with her Stem Cell Transplant?

I don’t know very much about Revlimid as I’ve not taken it personally. But some of the symptoms your wife is experiencing do seem to be on the list of common side effects of the medication.
However, I do know it’s possible to develop new reactions to a medication even after being on it for 8 years without issue. This can happen because metabolism decreases over time, meaning your body doesn’t get rid of it as fast, leaving higher concentrations of drug in the bloodstream, which increases the likelihood of developing side effects.

Has your wife been in contact with her hematologist/oncologist? What do they have to say about her side effects?

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