New to forum - Er+Pr+HER2-

FormerMember
FormerMember
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I am new to the McMillan cancer forum and wish to say hello to everyone. I would especially like to chat to those who are Er+Pr+HER2-, metastatic, receiving Abemaciclib+fulverstrant+denosumab.

  • FormerMember
    FormerMember in reply to Jude3

    Hi Judith, 

    Thanks for letting me know. New to this forum and thought that this was the only thread. I'll check the secondary bc forum and perhaps join your conversations as well.

    Take care

    Sonja

  • FormerMember
    FormerMember

    Hi, I am due to start abemaciclib later this week with Letrozole and was wondering how you were getting on with it. I have the same prognosis as you with two lung lesions. I have read the side effects are severe how are you finding it? 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Klin3, 

    I am, luckily, not having any major side effects. In my case, abemaciclib is given with fulvestrant injections and I've been on this medication for a year now.

    I was originally put on ribociclib, but my side effect were quite bad - constant neutropenia, sever skin allergies, vision problems, mouth ulcers, etc. My treatments were stopped each cycle for a week so my blood would recover. Doctors suggested amebaciclib, with a warning of gastrointestinal problems. But, I have not had any problems since the beginning. The only side effect I have are manageable mouth ulcers, with no need for antibiotics, just corsodyl spray.

    So, don't worry too much now, everybody reacts differently and if you find it unbearable, you can maybe swap for ribociclib. Doctors also mentioned pablociclib. Apparently, NICE would allow us to change this kind of medication three times.

    I hope this helps. Please let me know how you are getting on. Take care

    Sonja

  • Good luck today Jayne, be thinking of you x

  • FormerMember
    FormerMember in reply to Wobbly1

    Thank you wobbly 1 

    You have a good day to x 

    Jayne 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Sonja

    thanks for getting back to me, I have already tried palbacyclib but it sent my liver haywire after  one and a half cycles so was stopped. You are the first person who seems to be able to tolerate ambaciclib without significant issues ( long May it be the case). I was beginning to wonder if it was the right thing or whether the side effects outway the benefits so thanks for balancing out the view. 
    I will give it a go and hope that my liver enzymes stay in check.

    K

  • FormerMember
    FormerMember in reply to FormerMember

    Hi K

    Sorry to hear about palbociclib affecting your liver so badly. Yes, I expected the worst with abemaciclib but opposite happened. I hope and wish you have the same luck like me this time around.

    Take care, Sonja

  • Hi Sonja, I've just seen this post. I have been on the same treatments as you for the last 4 months. I just wondered how you are doing on them?