Lenalidomide “withdrawal symptoms“!?

Hi Fogmister. I just dropped by and noticed you've not yet had a reply to your post. It's good to read you're still in remission.

I myself have a different type of cancer so can't offer any insight as to if you're experiencing withdrawal symptoms. I've attached a link to the details about Lenalidomide from the Macmillan website and it does seem there could be a connection but I'm no medical expert!

Until someone from this group answers your post, it might be a good idea to Ask a Nurse, here on the forum (just click on the link I've created) but you may need to wait two or three days for a reply.

Sending you all the best, B x

Hi R,

I can’t offer any real substantial advice unfortunately but I just wanted to say it is great to hear from you again, even if it is in the context of the lenalomide withdrawal effects. I am not a medical expert but I have experienced several withdrawal symptoms from myeloma related treatments so for me it stands to reason that this would be a genuine phenomenon. I reckon whenever there is something unnatural going into the body, it takes a bit of time for the body to find its equilibrium again when that is taken away. Like Mrs BJH, it might be best to ask the medical teams about this to see if they can give you any deeper insight.

Here’s hoping the remission continues for a very long time to come!

Greg

Thank you very much to B, and as ever to the wonderful Greg.

I thought I’d better give an update. This does appear to be a recognised phenomenon called withdrawal syndrome. Thankfully it has subsided. I have had waves of nausea and fatigue, but these are fewer and further between. 

Even better my lenalidomide side effects are starting to subside too.  My tummy seems to be behaving itself, and the neuropathic pain is less intense as well. 

i have a follow up consultation in a couple of weeks and will come back to report what my doctor says. 

All the best of luck to you all. 

Rupert

Hi Fogmister

i have been on len/dex chemo and stopped this prior to stem cell harvesting for 4 weeks. Personally I felt much better with less fatigue but that may have been due to withdrawal of the dexamethasone.

Having my high dose chemo and transplant on 27th Sept and then will be on lenalidomide maintenance after 3 months so very interested in your experience. Please do let us know how you get on

All the very best going forward