Lenodomide side effects

Hi JSB4, Cakie here (Sue ) like you I had severe side effects to this maintenance drug .Extremely debilitating rash covering most of my body .Cold and flu like symptoms. Most concerning were the effects on my liver which was described by Dr as stressed and in chaos. 

The drug was discontinued. I made the decision not to have the drug reintroduced at a lower dose .Am not currently on any maintenance and remain in remission. 

I have a history of intolerance to many drugs including many antibiotics .I am thankful to my Consultant and his team for supporting this and working through all the problens during my treatment and SCT .

I hope you work something out with your treatment  Sue 

Hi Cakie thank you for your reply. 
my liver count has gone up which also worried me my consultant did discuss discontinuing the drug it does make me feel very unwell at times & when I’m not on it I do feel a lot better.

i will discuss with my consultant at my next meeting on the 7th May.

keep well.

jacquie

Hi,I've been on lenelomide for around 18 months now. I've been getting stomach cramps for a few months now but also a lot of fatigue which is starting to get me down. I started off on 5 mg but my paraproteins started to creep up last November so they increased to 10 which halted that but now I've got these problems. We've all got our battles with the side effects that are worse than the condition. Best of luck everyone.

Thank you for posting. I am on last two cycles of. D v t. B for.  Myeloma and then I am told will move on to Lenelomide     So good to be aware of that.   Thanks    Kevin.