Hi New here, I was diagnosed with Multiple Myeloma with numerous fractures in my spine and deposits in my pelvis July 2021. I had a autogulous Stem cell transplant in February 2022. I have been in remission since Stem cell transplant however, of last 3 months my Kappa/ Lambda light chains have been rising ( albeit slowly) , however, Paraproteins remain undetectable. I am concerned I may be starting to relapse!!
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Hi @Martha1956
Welcome to the forum
I think that’s a question for your team as your overall bloods will be taken into consideration along with if your high risk and or have genetic gains and losses
I was diagnosed in 2017 had my first Stem cell transplant
Light chains stayed at 66 and my Protein 4/5 so I had a good partial response
On my relapse in 2022 my light chains started rising along with my Protein and I was in more pain from new lesions
Second Stem cell transplant and my light chains and protein are less than 2 and in a very good partial response
I watch my numbers as they give me a good idea how my myeloma is behaving
If mine started rising I would be aware that I was relapsing
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Thank you that is really useful. K
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Hi @Martha1956 a great big welcome to our forum,
@2DB has given you a brilliant response.
You obviously sound concerned which is very natural, my thoughts and emotions have been on high alert since my diagnosis.
I find it helpful to write down all my concerns and questions so I am prepared at my next appointment.
I have learnt to be pleasantly assertive and not leave until I get answers…
I have learnt that any symptoms or test results might or might not be relevant and are usually not taken in isolation when the consultant decides the way forward or not.
The Blood Cancer UK support line is there for you if you would like to talk to them on 0808 2080 888.
I was not feeling well today but wrapped up warm and had my music playing and I went for a walk by the river and I found it really stopped me thinking about not feeling well and a bonus I got some fresh air.
What I am trying to say is try and divert your mind onto other things as the not knowing is not a nice feeling.
Have you got a nurse specialist contact, consultant or GP to speak to if you have not got an appointment soon?
Please do let us know how you get on and I look forward to hearing more about you.
Be kind and look after yourself
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