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.   

Hi Cakie

I'm interested to know/understand what you're doing to maintain remission without the maintenance drug? Are you on a special diet & exercise routine - or something else? I've just had my SCT which I found rough & I have two more rounds/months of Chemo courses to complete the treatment cycle & I'm not sure I want the maintenance drug - 

Appreciating your perspective

Maz

Hi Maz, so glad to hear you have the SCT and that you are on the road to recovery. 

I can only say about my experience with Lenalthomide  I have a tricky history with meds and have many allergies and sensitivities to drugs . Within a week of starting the drug I had developed a debilitating rash and felt very unwell. Blood test showed my liver was struggling. 

I was not keen to revisit the drug and after a discussion with the Dr's and CNS I decided not to have any further maintenance drugs for the time being. 

I have a good diet and avoid processed foods and love to walk.Im still careful about infections and avoid any one sneezing !  I have 3 monthly blood tests and either a face to face visit to the hospital or a telephone consult and remain in remission a year after my SCT .I am confident that if my numbers go up that the team at the hospital will act quickly .

I hope you have Dr's and a CNS who you trust and can talk too about this situation to help you make a decision. I have been so grateful that I have trust in the team who continue to look after me so well and the support of family and friends I wish you well and hope that you continue to make good progress 

Best wishes, Sue 

Thank you good advice 

Maz