[andrewsParticipant]

Hello,
I’m just newly diagnosed.
Stagell ISS
Cytogenetics IGH CCND1 Fusion detected.
Gain of 11q
Cytogenetics are not high risk category.

Hb 123
Wbc 3.4
Neut 3.5
Platelets 383
Sflc kappa. 8.6
Sflc lambda.1907
Ratio 220
Electrophoresis shows band too small to be quantified
LDH 120
B2 microglobin 5.2

40%plasma cells

[rosaryParticipant]

Hi

It’s probably best if your haematologist helps you with all of this – I assume they have nit just sent the data without some form of explanation….

If you are inclined to do the research for yourself you can enter your note into Claude and it will help you understand what the data is telling you ( I use Claude a lot and whilst it can make errors it’s pretty helpful )

The good news is the advances in myeloma treatment have been amazing over the past few years and I have been living with this for a while and lead a good life – your note suggests “standard risk” , stage 2 which should be a good starting point as you are given treatment options …. your lambda reading is high and needs more detailed explanation ensure you are talking to a haemotologist who has detailed knowledge of myeloma

[andrewsParticipant]

Thanks for your reply .
I’m diagnosed with light chain myeloma and awaiting treatment hopefully DVRt I think this is due to start next week with view to a stem cell transplant later on.
Some of the things I understand.

[annahModerator]

Hello andrews

Thank you for your post. I just wanted to reply to let you know about our team of Myeloma Information Specialists who are here to support you.

As rosary mentioned, your haematologist is best placed to discuss your individual results and treatment plan. Our friendly Myeloma Information Specialists can help plan for these discussions with your team and talk through what you may be experiencing.

They are available on the Myeloma Infoline on 0800 980 3332 (opening hours Monday-Friday 9am-5pm). They can provide information, practical advice and a listening ear. Calls have no time limit, and you can talk for as long as you need to. You can also email them at askthenurse@myeloma.org.uk

They will be able to let you know about any of our information which you may find useful too. In the meantime, you may want to look at the page on our website for newly diagnosed patients (https://www.myeloma.org.uk/me-and-myeloma/i-am-newly-diagnosed/) which also includes a link to our Infopack for newly diagnosed myeloma patients.

I hope this is useful.

Best wishes
Anna (Support Services Manager)

[rabbitParticipant]

Hi Andrews and welcome to the forum.

As Rosary has said, you have Stage 2, standard risk, lambda light chain myeloma. The rest of your blood test results look pretty consistent with that and to be expected in the circumstances.

The treatment which you mention is pretty standard. You may well have treatment side effects along the way, but it is highly effective.

The main reason for this post is to try to reassure: a myeloma diagnosis can be pretty devastating – it was for me – but people can lead long, long lives with myeloma. I was diagnosed in 2022: still in remission and going strong!

Please let us know if we can help give advice and/ or information.

Regards
Rabbit

• This reply was modified 3 weeks ago by  rabbit.

[andrewsParticipant]

Thankyou for the above replies I appreciate your time.

[Author]

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