I have smoldering Myeloma. Does anyone have this diagnosis?

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?

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?

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

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?

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.

@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

@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

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.

@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

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.