[leelynnParticipant]

Hi All
My partner was diagnosed with myeloma in March this year. His bone marrow was over 90% cancer cells. After the bone marrow aspiration we were told he had IgA myeloma with a del 1p high risk chromosomal abnormality. Are there any hopeful stories about the high risk part please 🙏

[rabbitParticipant]

Hi Leelynn and welcome to the forum.

I can do a hopeful story or two about high risk chromosomal abnormalities. 😀

I have an abnormality called +1q, which is a bit similar to del 1p in that they both affect chromosome 1. I also have the t(4, 14) abnormality.

Having 2 abnormalities is worse than 1.

Hopeful story 1. I was diagnosed in 2022. I am still in remission. My consultant talks about it being “functional normal risk”. In other words, my body is sort of ignoring the chromosomal abnormalities. My prognosis has therefore significantly improved.

Hopeful story 2. New treatments such as Elranatamab, Teclistamab, Talquetamab and Belantamab have all been approved in the UK and work pretty well for high risk patients such as your partner (and me). Further treatments such as trispecifics, in vivo CAR-T and CELMoDS are being trialed at the moment. If you are reading stuff onlne, you may be seeing out of date data on life expectancies etc. Things are improving rapidly.

Regards
Rabbit

[leelynnParticipant]

That’s great to hear. Thank you for sharing and long may it continue for you

[najmahParticipant]

Hi Leelynn and welcome. Since joining I’ve found this forum to be a wealth of information and support, I’m sure you and your partner will too. Have to give a special mention to Rabbit, he’s a wealth of such sensible information and advice. I can only share my experiences.
I was diagnosed with IgA myeloma too in April this year. I’m not high risk though as my plasma levels were 40% after my bone marrow test. So today I’ve just had week 10 of my treatment, I’m on Isa-VRD and it’s working well for me. Paraproteins play a big part too, at the end of week 6 (the end of my first cycle) my Paraprotein levels have dropped significantly. So there can be good news and a lot of hope. The final part of my bone marrow biopsy has only just come through and that’s the Cytogenetic testing. I’ve got Hyperdiploidy which I’ve never heard of before but my consultant told me it affects 50% of myeloma patients and is characterised by extra odd number chromosomes in the plasma. But it’s not always a bad thing as sometimes it can increase the remission time. So I’ll take that!

So I’m wishing your partner and you well in your journey and in his treatment.

[Author]

Posts