Hello All
I have been doing DVTD treatment (on cycle 6 the last one) and have a very good partial remission (since July).
It has been very heavy going with Thalidomide 50mg side effects, sedation, severe constipation and peripheral neuropathy. I knew I would have an issue with this drug and constipation, but the NHS would not let me swap it with Lenalidomide. I believe that any new patients now get Lenalidomide with a recent change.
I decided not to do stem cell at the moment and I asked if I could take Thalidomide every other day, rather than stop it for the last two cycles (did not want to risk the numbers going back up). I am pleased to say that this has helped a great deal with all my main side effects. I joke with friends that I am now 50% zombie not 100% zombie lol.
I no longer have a life mostly on the sofa, or in my new ‘sitting pretty’ recliner to protect my spine.
My pain has improved and I have got back to my much loved walking almost 3 miles every other day.
I am now looking to find a one to one physiotherapist to work with to build my core.
Never thought I would get this far (I deteriorated a lot whilst waiting for treatment).
Thank you for all of you past replies.
