I have smoldering Myeloma. Does anyone have this diagnosis?
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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@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
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.
Totally my screw up. I have both multiple myeloma MM stage 1 and systemic mastocytosis. Those are the 2 individual diagnosis I have active.
@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
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.
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. ☺️
jan 4 she sees her doctor,he said stop revlimid, and yes i was on uss forrestal 1966-1969 veitnam 1967
yes own stem cells, waiting for return call from dr
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?
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?