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Has anyone had problems with Afinitor and their liver?

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brandall
brandall Member Posts: 97
edited May 2015 in Stage IV/Metastatic Breast Cancer ONLY

Had my blood work done after completing my first month of Afinitor and my ALT was up to 126. So they are taking me off it for a week and rechecking to see if my liver recovers. Has anyone else had this problem on Afinitor and did your liver get back to normal after a break?

Mouth sores, horrid rash, Blood pressure problems and damaged liver…this stuff better work!

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  • Rosevalley
    Rosevalley Member Posts: 1,664
    edited May 2015
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    I hear you brandall... I bailed after 6 months and refused to take any more. Mouth sores, diarrhea, high BP, bad ankle and feet endema and my heart racing and causing my BP to drop.. fun fun.. who needs a heart rate of 136? My liver numbers were ok though. Wish you luck. The stuff worked at kicking the cancer back but if it takes out your heart in the process what bargain is that? I took 10mg every other day, maybe if they owered your dose? Afinitor is hard. I hope your liver repairs itself after your break.

  • bestbird
    bestbird Member Posts: 232
    edited May 2015
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    Brandall, although I'm sorry to hear your liver enzymes have increased, but it's good that you and your doctor are being vigilant about monitoring them very carefully while you are on Afinitor.

    Below is an excerpt about Afinitor and possible liver/lung impacts from my MBC Guide: (For anyone interested, a complimentary copy of the Guide may be requested at:)

    https://community.breastcancer.org/forum/8/topic/828391?page=1#idx_11

    Several people on various MBC online forums have reported developing metastasis to the liver or lung after taking Afinitor, but as of January 2015, no official studies were located which corroborated this phenomenon.  Therefore, the possibility that Afinitor may in some way precipitate liver and/or lung metastasis remains anecdotal, yet it is something to be aware of.

    It is good that you're off the drug, at least for a bit.  I hope things settle down well for you!

  • bestbird
    bestbird Member Posts: 232
    edited May 2015
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    I found a public thread on Inspire that contains an extensive discussion about A/A, which is one of several threads I remember reading about this subject.  (Please keep in mind this was befor Afinitor was approved).  http://www.inspire.com/warrior1/journal/afinitor-aromasin-my-experience/

  • HLB
    HLB Member Posts: 740
    edited May 2015
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    Wow that thread is very alarming. my onc is mad that refused to take it and I have been nervous about not taking it, but I think I am glad now that I did not. Maybe later when things are more well known. 

  • starbrightlyshines
    starbrightlyshines Member Posts: 73
    edited May 2015
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    Yes, there seem to be an awful lot of SE with it.  For some reason that is what my Dr wants me to try next but I am hesitant. I feel good, and other than my one met on my spine I am not sure if anyone can say with certainty that Femara is failing.

    HLB- what are you currently taking now?

  • HLB
    HLB Member Posts: 740
    edited May 2015
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    Hi Star, I should have answered more fully about my treatment in the other thread. I am on aromasin, metformin, and celebrex and Meriva which is a bioavailable brand of curcumin. I am also getting XGEVA once per month which I have been getting from the beginning three years ago. If you only have one met I would definitely look into radiation for that. I don't think it is generally done but there are some who think you should do it with limited mets.

  • brandall
    brandall Member Posts: 97
    edited May 2015
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    Thanks for chiming in ladies. That thread freaked me out a bit. I've already had liver mets, so I'm probably not as afraid of them as some people who only have bone mets, but I really don't want new liver mets! I've been off the Afinitor since last Thursday. I'll have blood work done on Wednesday to see if my liver is healing and we'll make more decisions from there.

    I thought the rash was from the afinitor, but it has gotten worse since I went off the drug, so now I'm not so sure. Maybe it is the Aromasin? Or maybe I'm allergic to the medicine they gave me to put on the rash (Clindamyacin). The fun never ends ;)

  • LilSchatzie
    LilSchatzie Member Posts: 34
    edited May 2015
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    I was on Affinitor/Aromison for 20 months. It impacted my liver emzymes while I was on it. It also affected my blood sugars. I found that it was better to take the drug during the day, instead of at night: I also felt my liver enzymes were better the more control I had on my glucose numbers.

    After I stipped a/a all my liver enZymes went back to normal.

    It's a strong drug, but it worked for me for over a year and a half.

    Good luck

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