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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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flightdeckjohnn | @flightdeckjohnn | Dec 17, 2021
In reply to @loribmt "You’re wife has been through a great deal with her MM history. Was she able to..." + (show)
@loribmt

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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yes own stem cells, waiting for return call from dr

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flightdeckjohnn | @flightdeckjohnn | Dec 17, 2021
In reply to @loribmt "You’re wife has been through a great deal with her MM history. Was she able to..." + (show)
@loribmt

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?

Jump to this post

jan 4 she sees her doctor,he said stop revlimid, and yes i was on uss forrestal 1966-1969 veitnam 1967

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Dec 18, 2021
In reply to @flightdeckjohnn "jan 4 she sees her doctor,he said stop revlimid, and yes i was on uss forrestal..." + (show)
@flightdeckjohnn

jan 4 she sees her doctor,he said stop revlimid, and yes i was on uss forrestal 1966-1969 veitnam 1967

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Thank you again for your service! A friend of my husband’s was a flight deck captain, he has so many stories to tell! What a wild and harrowing job that was but what an awful war.

I’m glad your wife has an appointment to see her doctor coming up soon. Those symptoms sound like they’d be making her days pretty miserable and unpredictable.
Stopping the Revlimid with her doctor’s advice, will be a good indication whether that’s the culprit or not. I hope she sees some improvement quickly! That will be valuable information to discuss with her doctor.

Will you let me know what she finds out?

May you both have a wonderful holiday season. ☺️

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wyom1998 | @wyom1998 | Dec 24, 2021
In reply to @loribmt "Hi @flightdeckjohnn, first I have to ask about your name, FlightDeckJohnn! Did you serve on a..." + (show)
@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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If I read your comment correctly, the diagnosis is both MM and Myeloma? Please confirm
I have been searching for someone else with both like me.
It seems to be rare.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 24, 2021
In reply to @wyom1998 "If I read your comment correctly, the diagnosis is both MM and Myeloma? Please confirm I..." + (show)
@wyom1998

If I read your comment correctly, the diagnosis is both MM and Myeloma? Please confirm
I have been searching for someone else with both like me.
It seems to be rare.

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@wyom1998 Multiple myeloma is abbreviated to mm by many people. I believe what you are asking is one and the same condition. For many multiple myeloma patients, they started with MGUS [monclonal gammopathy of unspecified significance]. This can sometimes, but not always, advance to SMM [smoldering multiple myeloma] And this smm can sometimes, but not always, advance to active multiple myeloma. The image that comes to mind is a layer cake, of sorts.

Have you been diagnosed with active myeloma, and if so, what treatment are you going through? I am on round 5 of chemo for multiple myeloma.
Ginger

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2 replies
wyom1998 | @wyom1998 | Dec 24, 2021
In reply to @gingerw "@wyom1998 Multiple myeloma is abbreviated to mm by many people. I believe what you are asking..." + (show)
@gingerw

@wyom1998 Multiple myeloma is abbreviated to mm by many people. I believe what you are asking is one and the same condition. For many multiple myeloma patients, they started with MGUS [monclonal gammopathy of unspecified significance]. This can sometimes, but not always, advance to SMM [smoldering multiple myeloma] And this smm can sometimes, but not always, advance to active multiple myeloma. The image that comes to mind is a layer cake, of sorts.

Have you been diagnosed with active myeloma, and if so, what treatment are you going through? I am on round 5 of chemo for multiple myeloma.
Ginger

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Totally my screw up. I have both multiple myeloma MM stage 1 and systemic mastocytosis. Those are the 2 individual diagnosis I have active.

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wyom1998 | @wyom1998 | Dec 24, 2021
In reply to @gingerw "@wyom1998 Multiple myeloma is abbreviated to mm by many people. I believe what you are asking..." + (show)
@gingerw

@wyom1998 Multiple myeloma is abbreviated to mm by many people. I believe what you are asking is one and the same condition. For many multiple myeloma patients, they started with MGUS [monclonal gammopathy of unspecified significance]. This can sometimes, but not always, advance to SMM [smoldering multiple myeloma] And this smm can sometimes, but not always, advance to active multiple myeloma. The image that comes to mind is a layer cake, of sorts.

Have you been diagnosed with active myeloma, and if so, what treatment are you going through? I am on round 5 of chemo for multiple myeloma.
Ginger

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Revlimid, valcade and Dara. I just fished cycle 5. I start round 6 on 1/7 and am tentatively scheduled for harvest mid February.
I lost 3 weeks around Thanksgiving for total right hip replacement.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 25, 2021
In reply to @wyom1998 "Revlimid, valcade and Dara. I just fished cycle 5. I start round 6 on 1/7 and..." + (show)
@wyom1998

Revlimid, valcade and Dara. I just fished cycle 5. I start round 6 on 1/7 and am tentatively scheduled for harvest mid February.
I lost 3 weeks around Thanksgiving for total right hip replacement.

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@wyom1998 What is your medical team recommending for treatment of the systemic mastocytosis? Are they considering treating both disorders at the same time? I am Stage III of myeloma, but since I am also dealing with failing kidneys, we are going slowly to bring numbers down.

Please let me know how I can help you, any support that you might need?
Ginger

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1 reply
wyom1998 | @wyom1998 | Dec 31, 2021
In reply to @gingerw "@wyom1998 What is your medical team recommending for treatment of the systemic mastocytosis? Are they considering..." + (show)
@gingerw

@wyom1998 What is your medical team recommending for treatment of the systemic mastocytosis? Are they considering treating both disorders at the same time? I am Stage III of myeloma, but since I am also dealing with failing kidneys, we are going slowly to bring numbers down.

Please let me know how I can help you, any support that you might need?
Ginger

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My team is not specifically treating mastocytosis, but feel that my bone marrow transplant process will address it. That is the part that has made me nervous. My tryptase levels have decreased under MM treatment so something is helping.
My bone pain and lesions continue to increase and I would like to treat, but am afraid of kidney effects.
It is a tough balance. Please take care and thanks for conversation.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 31, 2021
In reply to @wyom1998 "My team is not specifically treating mastocytosis, but feel that my bone marrow transplant process will..." + (show)
@wyom1998

My team is not specifically treating mastocytosis, but feel that my bone marrow transplant process will address it. That is the part that has made me nervous. My tryptase levels have decreased under MM treatment so something is helping.
My bone pain and lesions continue to increase and I would like to treat, but am afraid of kidney effects.
It is a tough balance. Please take care and thanks for conversation.

Jump to this post

@wyom1998 My kidney disease is not related to the multiple myeloma, but to a very rare autoimmune condition. The oncologist who is treating me is using as light a dose as possible of the chemo, just so we do not upset the apple cart if it can be avoided, with my kidneys. Earlier this week my kidney function level was tested at 15%.

I will be curious to hear from you just how everything fares for you. You tske care, too!
Ginger

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