I have recently been diagnosed with smouldering myeloma without treatment at the moment.
I noticed on my doctors letter that i am high risk cytogenetics and wondered if someone could explain this to me please
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Hello @Glennie
Welcome to the forum, and thank you for taking time to send in your post
I’m so sorry to learn about your circumstances, and I’m sure you have many questions that you want answers to.
Needless to say, the best people to ask are your medical experts who will I’m confident be able to explain things in a way that allows you to fully understand everything.
You may find the link Research impact on leukaemia | Blood Cancer UK of use as this eludes to cytogenetics (the study of chromosomes).
I hope you find the answers you are looking for but done forget if you prefer you can always call us and speak confidentially with our support services team for information and support on 0808 2080 888
Take good care
Kind regards
Mike
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Thankyou for your reply i will certainly have alook.
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Hello @Glennie
Thank you for your post.
We are sorry to hear that you have been diagnosed with smouldering Myeloma, we can imagine this was a shock and can be overwhelming.
Your haematology team will be able to provide you with more individualised advice and about what this means for you specifically, but we do have a page that may be useful Smouldering myeloma | Blood Cancer UK along with our colleagues at Myeloma UK who have fact sheet on this.
Smouldering myeloma - Understanding myeloma Infosheet Risk is discussed in further detail on pages 9 & 10 - here it states that risk can be determined from tests your team will have taken and ‘the test results that mean you could be at higher risk are: • More myeloma cells in the bone marrow • More paraprotein or light chain in the blood • Specific changes in the genetics of the myeloma cells. These test results can give an indication of your risk, although every individual person is different. Your own healthcare team are best placed to discuss with you your risk of developing active myeloma.’
A higher risk means that people are likely to develop active myeloma more quickly than someone who is deemed lower risk. However, smouldering myeloma is very variable, and each person is different. It is not possible to be certain exactly when your smouldering myeloma will become active but your team will be able to give individualised advice based on the tests that you have had carried out.
If you would like further support or more information on this, please do get in touch on 0808 2080 888.
Take care & warm wishes,
Emma (support services nurse)
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Thankyou for yor kind words and the information.
I think the words high risk have really worried me. Its the fear of the unknown and the if and when.
My consultant is very good but these resultx where in a letter to my doctor. I will try to contact ner and ask to explain further but they are all so busy.
Thankyou. X
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