Please can I ask how many people on here use lenolidamide for Myelodysplastic syndrome (MDS) and what side effects do they have.
Hi @Etihwam and welcome to the forum.
I have a different blood cancer but hope others will be able to share their experiences with you.
How are you doing one medication or have you not started it yet?
Nichola
Hi @Etihwam
Lenalidomide is usually only prescribed for people who have Myelodysplastic syndrome (MDS) with the sub-type Del 5q so I presume this is the case with you?
I would suggest you discuss the side effects with your clinician or you should be able to look them up yourself on the patient information leaflet with your prescription.
Something else you should discuss with your clinician is about the emergence of a mutation TP53 in people treated with lenalidomide. This mutation offers a poor prognosis in Myelodysplastic syndrome (MDS) and the British society for Haematology guidelines suggest that clinicians should fully discuss this possibility with patients. Iām not sure that they always do though?
The alternative may be simply to have blood transfusions which do not carry this risk. It would be for you to decide. If you do go ahead with lenalidomide, it is vital that your mutation status is monitored for the appearance of the TP53 mutation so that you can stop treatment. Here is a link to some research about lenalidomide and TP53.
Through my work with Myelodysplastic syndrome (MDS) UK charity, I knew of 4 people who took lenalidomide and developed TP53 mutations. There could be many more but despite me writing to BSH, they seem unwilling to take this any further or investigate further.
Hope this helps
Chrissy.
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