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A MyMyelomaTeam Member asked a question 💭
Dallas, TX

Dr Durie has many informative videos on YouTube. This is one FYI:

https://youtu.be/413BIZ-pruU

I recently learned that IGA lambda is not a poorer diagnosis as once thought. Newer treatments allow for successful IGA remissions. Have you heard of any new information?

January 12, 2023
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A MyMyelomaTeam Member

I trust in the Lord and Dr. Durie💪🙏😍 They both say do not be afraid. So make sure you have a great myeloma specialist. Make sure you are getting the Free lyte testing. We probably all need to do a 24 hour urine every so often. Drink that water!! Dr. Durie says you might also need imaging, like PET CT from time to time. But he says it's no harder to treat than regular run of the mill myeloma. The high risk genetics still come into play with light chain only myeloma. So, you might be looking at drug combinations instead of just one drug for treatment. As has been the case for me💪💜

January 12, 2023 (edited)
A MyMyelomaTeam Member

Hi Charlie,

I am doing well. Spending lots of time reading and praising God. I am planning a trip to Israel soon. I came across some interesting information and started taking probiotics (Pendulum: GI Repair and Akkermansia) that are actually improving my numbers. I am proceeding cautiously. No other treatments. Dedra, a SMM patient said that her IGA went down 600 points. There is a theory that Clostridium butyricum is a missing strain in our gut. More information is on Facebook/Smoldering Myleoma. (Look for Dedra Jenkins.) WOW!

Still praying for everyone and believing that cure is here—just needs to be actualized.✝️

January 15, 2023
A MyMyelomaTeam Member

Every 28 days I do urine collection the day before I see my oncologist. On the day I see her just before nurse collects 13 vials of blood as required for Clinical Trial.

January 23, 2023
A MyMyelomaTeam Member

I do the same thing for my treatment on my clinical trial REGN 5458. I have 1 treatment a month now and a bag of antibodies for my immune system

April 21, 2023
A MyMyelomaTeam Member

That it what my sister has and she will be having a SCT in February she did have to have the combination drugs but she went from 85% to 5% and we are praising God all the way.

January 15, 2023

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