Clinical Trial

Hi Marie. Welcome to the forum.

A diagnosis like the one you have had is likely to be traumatic. It was traumatic for me to be diagnosed with stage 3 MM in 2022, but I am still going strong. People can live for a long, long time with myeloma these days.

I am also high risk. An extra challenge, but newer chemo seems to respond pretty well to it.

Carolyn recently started a discussion on this forum. She is also diagnosed with smouldering MM.

 newly diagnosed with smouldering MM 

The topic of a clinical trial including Iberdomide also came up recently, both by Paul on this forum...

 Should I do the Iberdomide trial or the standard treatment? 

... and on a similar forum run by Myeloma UK.

https://forum.myeloma.org.uk/forums/topic/oral-iberdomide-trial/

The Myeloma UK forum has a section on MGUS and smouldering MM.

https://forum.myeloma.org.uk/forums/forum/smouldering-myeloma-mgus/

Now on to your actual question!

Side effects of myeloma drugs vary enormously from person to person, but I can give my experiences.

I have experience of dexamethazone. The side effect that has dominated for me has been sleeplessness. This is pretty normal. You may have heard of the pop group Dexy's Midnight Runners: the name came from them dancing at midnight because they took dexamethazone! After a large dose (20mg I think), it took 2 nights of little sleep to get back to normal. It also temporarily boosted my appetite. Using the past tense as the dose and side effects are much less in my 2+ years so far in remission.

I also have experience of a drug very similar to Isatuximab, called Daratumumab. It is injected over a few minutes (this process generally hurts). It causes me what I can best describe as semi-diarrhoea and fatigue for about 48 hours. I am still getting that every 28 days, to help keep me in remission.

I hope that this is some help to you.

Thank you for your response really appreciate it 

I will see how I go and find this all out next week when I start on Wednesday - I am scared worried and finding it difficult to sleep as it is.