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I Have NON-SECRETORY Multiple Myeloma.

A MyMyelomaTeam Member asked a question 💭
Marion, MA

I am seeking others with this diagnosis. I had a stem cell transplant and have had extremely low values of IgG. IgA, and IgM. I did have 4 rounds of chemo prior to stem cell transplant and 2 infusions of IVIG
The chemo of the stem cell transplant eliminated all immunity I had as that is where the cancer cells are
I will have to have all my vaccinations again in about 6-8 months.
I have no immunity from all baby shots, flu vaccines. And Tetnus polio and other sources.
I am isolated and… read more

September 9, 2022
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A MyMyelomaTeam Member

Here’s a non secretory study.
https://pubmed.ncbi.nlm.nih.gov/25382589/

It’s a little old from 2015. It seems to conclude it has more favorable longevity vs standard MM.

Looking for current studies should provide info based on the latest treatments.

September 13, 2022
A MyMyelomaTeam Member

I cannot remember his name but a man posted in the last day that he is nonsecretory. Annecares husband is also nonsecretory. I have a friend who is nonsecretory and she was diagnosed about 11 years ago

September 9, 2022
A MyMyelomaTeam Member

I don't have non secretory, but my immunoglobulins are all very low. They aren't giving me IgG because I haven't had major infections since my transplant. I too try to stay safe. I had all my baby shots over. Covid shots and boosters. I also got Evusheld in April. I get it again this month. I'm thinking of having titers drawn to see if the baby shots have given me any immunity. Trying to do all I can to stay healthy. Emory does bone marrow biopsies on all myeloma patients yearly. I get mine in November. Thank goodness they knock me out. How often will you get a biopsy?

September 9, 2022 (edited)
A MyMyelomaTeam Member

Probably at 6 months post st em cell transplant.

September 9, 2022

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