Non secretory

[copter]

Hello

I was wondering if there is anyone out there who has non secretory myeloma who would like to share some of the challenges of this?

I was diagnosed in July 2020 and despite repeated treatments inc SCT I am not in remission

I am currently on fourth round of KRD and will be having a scan later this month to see if it has been working

Not having the usual blood reference points can create anxiety and sometimes remaining on a course of treatment for longer than desired until a scan reveals what has been happening.

Thank you

Simon

[mulberry]

Hi Simon
Myeloma Crowd Healthtree (USA myeloma patient group) have just last month set up a ‘chapter’ (group) for non secretory myeloma patients and have arranged their first online info session on 8 March which you may find interesting. I couldn’t post a link but you will be able to find it online with the info above.
Jane

[copter]

Many thanks that’s really helpful
Simon

[andreafillmore]

Non-secretory myeloma is defined as clonal bone marrow plasma cells of less than 10% or biopsy-proven plasmacytoma rushessays evidence of end-organ damage caused by the underlying plasma cell proliferative disease, such as hypercalcemia, renal insufficiency, anemia, or bone lesions, and a lack of serum.

[patricklocke]

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[bear]

I think we’ve just been spammed by someone selling something…

[micheal1]

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[lottielaura]

Hi Simon
My myeloma is non secretory. I was diagnosed August 2020 and despite a SCT and numerous chemo regimes I only made remission in May this year. My next scan is in July! My only good thought is that our kidneys should be protected.
Stay positive, you’ll find the right one!
Laura

[copter]

Hi
Good to finally hear from someone non secretory! I’m having the same problem – endless chemo anD SCT and no remission. Can I ask which treatment gave remission?

Simon

[copter]

Ps why kidneys protected?

[lottielaura]

Hi
Sorry for the delay in my reply but I’ve been desperately trying to remember what my last chemo was 😀 Velcade, not my favourite as it had damaged to nerves in my hands really badly!! Panobinostat and good old dexamthasone.
My understanding is that it is the light chains that damage the nephrons in the kidneys, I may be wrong, but hey, I’ll take it 😀
Good luck, hope you get there soon x

[lottielaura]

Hi
Sorry for the delay in my reply but I’ve been desperately trying to remember what my last chemo was 😀 Velcade, not my favourite as it had damaged to nerves in my hands really badly!! Panobinostat and good old dexamthasone.
My understanding is that it is the light chains that damage the nephrons in the kidneys, I may be wrong, but hey, I’ll take it 😀
Good luck, hope you get there soon x

[copter]

Hi
Thanks for getting back to me. I am just starting on isatuxamab/pom/Dex as the Carfilzomib didn’t stop progression of disease. Did you try a monoclonal antibody?
Is Panobinostat 5th line through NHS?

Thanks for your time in this!

Regards
Simon

[lottielaura]

It was 4th line, 5th would be the one you are on now.

[copter]

Thank you – would you mind if we could have an email exchange as would be grateful if I could ask a few more things if your patience is up to it?!

copter30@hotmail.com

Thanks

Simon

[Author]

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