LENOLIDAMIDE SKIN REACTION

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Hi  to all   Vespa   

i am now  17-18 months post Stem cell transplant,    after   2 more  cycles of DVTD   i went onto  Lenolidamide,   after 3   cycles  and  a bad skin reaction,  itch  rash,          the dose was reduced from 10 mg to  5 mg,    this   helped,   but  became intolerable again,   so with  guidance from  haematologist i came off Lenolidamide,     skin  has cleared  up,     recent blood results are still good,    i wonder if any other MM    patients have gone through this,  and how far down the line are you with no  Lenolidamide,  

 We did discuss  the second line of treatment,  but only when the MM   relapses,     and the  new approved  combination of  BVD.    

BVD combines belantamab mafodotin (Blenrep®), bortezomib (Velcade®) and dexamethasone and is aimed at people who have received one previous line of treatment only, including lenalidomide (Revlimid®).

i feel good,      a bit of fatigue with the high temperatures in the UK  recently    but who isn't  ?

Kevin    AKA  Vespa 

  • Hi Kevin , Sue here . I'm now 2years 3 months post SCT .

    I'm glad to here you are doing well but sorry to read about your problems with Lenolithamide . I had a severe intolerance to this drug .My liver ( according to the team ) was in chaos  and the skin rash was i tolerable . I with the help of my consultant made the decision to withdraw the drug and revisit alternative medication when the day comes that I need treatment again .

    I'm well at the moment , like you with fatigue days but that's OK . My skin is still takes an age to heal I'd I get an insect bite and is super sensitive and tricky to manage .My local pharmacist has been a great help with this more so than GP or Haemotology.  

    Stay well and enjoy tge summer .Sue 

    Cakie

  • Thank you Sue for the response.    Watch. And wait I guess.   We have trodden similar paths !

  • Hi , yes that's about the sum of it .I get bloods and a chat every 3 months and am happy with that .

    Sue

    Cakie