I Would Like To Know What Factors Tells The Doctors That You Are Out Of Remission? | MyMyelomaTeam

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I Would Like To Know What Factors Tells The Doctors That You Are Out Of Remission?
A MyMyelomaTeam Member asked a question 💭
posted August 9, 2022
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A MyMyelomaTeam Member

The biggest markers is our bone marrow biopsy that shows elevated myeloma cells. Rising M Spike. New bone lesions. Reduced kidney function. Elevated affected immunoglobulin. Rising beta 2 microglobulin. Changes in our CBC. Low red, white and platelet count. Hope this helps 💕

posted August 9, 2022 (edited)
A MyMyelomaTeam Member

I expect it could be from a long list of items from your bloodwork. I believe some are an elevated protein level in blood or urine, having a MSpike level above zero (less than 0.3 may be insignificant by itself). Any of the Ig levels being above normal limits. A high Beta-2M. A bad Kappa/Lamda Ratio, elevated Kappa or Lambda levels. Others might be things like bad kidney or liver levels. Things like these (and I imagine many others) would be obvious tells to your Doctor.

Later, my GP told me she knew I had MM due to my high blood Total Protein. Initially, She did not mention it to me, waiting for an oncologist to make that determination.

While the above are items to look at from your Labs, your oncologist is the one to make that decision and I would expect they’ll notice it before you would bring it to their attention.

I had one Labs with a high B2M. I emailed my nurse. She said don’t worry- it’s only one marker while all others were normal. She said their can be bad Lab reports where they’d want to see 3 Labs before being concerned, and with higher values. By the next Lab, it was normal again and has continued to stay normal.

posted August 9, 2022
A MyMyelomaTeam Member

Trim, are you taking it with food? I have to take Pepcid. See what she says💗

posted August 9, 2022
A MyMyelomaTeam Member

Yes the most important factor is that the chemo is successfully beating down your m spike! Myeloma definitely changes a person and your goals become different
At first my sister detested the chemo and thought she’s rather just let myeloma do it’s damage
She was so frustrated and suddenly felt like a different person
She had been so active and now lives w daily back discomfort after 3 kyphoplastys but she found her new goals and is grateful for the fact that she’s become independent again and fairly active
Once she survived her initial hospitalization, she was discharged home in terrible condition
Her legs were completely swollen, she had intense back pain requiring large doses of methadone and she needed full time assistance with everything! Even going to the bathroom
I was horrified! She was 61 and had never been on any medication, had been fairly athletic and was very healthy
I was hard to look at her then and to believe she’d ever get better!
After her ASCT that didn’t do much for her but then 5 months on Revlimid maintenance following her transplant, she was almost back to her old self and quickly came off the methadone
I’ve been an ICU nurse for years but I was never an oncology person so I was truly shocked at her recovery and incredibly grateful

posted May 21, 2023
A MyMyelomaTeam Member

I had a bone marrow biopsy again and 5 to 10 % of my marrow had myeloma cells. As well as my kappa light chains were steadily increasing. I only show myeloma in my urine in which my urine proteins were elevated.
She put me on a small dose of Revlimid but once again I got incredible heartburn with one pill. So I decided to not try to tolerate the pain again and told her I just couldn’t take it. We’ll see what happens tomorrow and see what she says.
Larry you sure know your stuff! Good for you! I just can’t get all that. I’ll stay to my very basics and pray. Ha

posted August 9, 2022

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