Newly diagnosed starting treatment

Hello all,

Yesterday I was diagnosed with myeloma. Although I thought it would be the case, I was diagnosed with monoclonal gammopathy of unknown significance (MGUS) 13 years ago.i feel shuttered, as hit by big lorry.

start treatment in two weeks time. Daratumumab, Lenalidonide and steroids. I would appreciate very much to hear how people get on with these.

Have read some posts, wonderful community.


Hi @Butterfly I am so glad that you have found us so quickly. Welcome to our forum.
I think it is natural to feel hit by a big lorry.
I was diagnosed 20 years ago with another blood cancer but I am sure my feelings and thoughts have been on high alert ever since.
I felt as if I was on a rollercoaster that I could not get off. I also felt in a weird bubble with the world going on around me.
This couple of weeks will give you the opportunity to write down all your fears, questions and practicalities.
I will copy you the Blood Cancer UK link to Myeloma Myeloma | Blood Cancer UK
The Blood Cancer UK support line is also there for you on 0808 2080 888
I hope others will be able to share their experiences for you.
Be ever so kind to yourself and please do keep posting how you are doing.

Hi @Butterfly
I have tolerated dara very well my issues were velcade and Dex. I don’t have any experience of lenlidamide
Your team should ask you a check list of questions before each injection
Report anything that feels different to you
For example it felt like I was walking in broken glass into cycle 3 which is a sign of neuropathy
Lenlidamide I believe can give you tummy issues

Overall treatment can make you feel tired unusually tired
Steroids will give you a big buzz and want to eat more it’s usually the time we all do those big jobs and I found I could talk for England :smiley:
There is a come down from steroids also. It makes me tearful and quiet and my bones hurt for a couple days

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Thank you very much Erica and 2DB for your kind words.