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Share your story: Your reflections about Mother's Day

Afinitor and Faslodex combo

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  • Grannax2
    Grannax2 Member Posts: 2,387
    edited September 2018
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    I may be starting AA within a month. IF failed after 20 months, actually it's still working on my lung and chest. Those mets are very low uptake now. Y90 gave me over a year for my liver mets. Now, I have a new liver met. Hoping y90 can be done on it. But, I will have to change TX. I looked on AA thread, it doesn't seem too active.💞

  • bella2013
    bella2013 Member Posts: 370
    edited September 2018
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    Princess Pincushion, your reference to Psalm 3 reminded me of my favorite song by the Brooklyn Tabernacle Choir. Go to YouTube and search “Thou O’ Lord”. It is based on Psalm 3. Stand by to be blessed beyond measure😇.

  • PrincessPincushion
    PrincessPincushion Member Posts: 43
    edited September 2018
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    Tomorrow's the Big Day! It's going to be an 8 hour hospital marathon. I register at 7am for the thoracentesis. With blood work and everything else, I was told I won't be done until close to 10. From there, I go straight down the street for my radiation appointment (which is supposed to be at 8:30, but they told me to just come when I'm done getting drained). I'll have about an hour to go home and choke down some lunch (a very difficult matter these days... I rarely eat more than half of any meal, and even that is forced), before my husband and I go see the MO at 1 PM to get the results from the PET scan and find out what the next step is.

    I'm both anticipating and dreading that appointment tomorrow afternoon. I'm looking forward to having the suspense lifted and knowing what's going on, but I'm dreading it, because I know things are worse.

    All that being said... theologian Charles Spurgeon wrote, "It is not to be imagined that he who has helped us in six troubles will leave us in the seventh. God does nothing by halves, and he will never cease to help us until we cease to need. The manna shall fall every morning until we cross the Jordan."

    Pincushion

    ~~"In peace I will lie down and sleep, for you alone, O Lord, will keep me safe." - Psalm 4:8~~

  • moissy
    moissy Member Posts: 371
    edited September 2018
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    We’ll be thinking of you, Princess P! Heart

  • PrincessPincushion
    PrincessPincushion Member Posts: 43
    edited September 2018
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    I'm posting my day's update in the "How Are People With Liver Mets Doing" thread.

    It's been a long, dreadful day.

    PP

  • moissy
    moissy Member Posts: 371
    edited September 2018
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    Princess P- I’m glad you made it through the day and sorry to read about the progression. It’s so hard to feel that we need to jump on another horse while we’re expecting the horse we’re on to go a little farther.

    I’m glad you are getting more heads to review your options at a larger center. You have every reason to believe that while Afinitor didn’t workfor you, your next treatment can be very effective.

    And miraculous that they got you in for an appt within two days. Excellent!

    Hope you are able to rest tonight after your exhausting day. We’re all in your corner!

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited September 2018
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    I will be starting AA soon as my second line of TX after Ibrance failed. I was very pleased that I'm already approved by insurance and a foundation paid my co pay. It would have been $750 a month. I know some people have been denied by insurance for it. Step one is done. Now I have to see what IR says about the possibility of local treatment for my liver. That is on Wednesday. 💞

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited September 2018
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    good luck Grannax. I'm lucky to be doing fairly well on Afimitor and Faslodex for about 10 months now. In the middle of cyberknife treatment for met to T1.

    Otherwise doing ok.

    Good luck to you on this one.

    Sunset

  • Mimito3
    Mimito3 Member Posts: 2
    edited April 2019
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    Hi there "a beautiful sunset",

    I've been on this site before but several years ago.  I am also on Faslodex and Afinitor (Faslodex for six months, orginally in combo with a trial I was on) then I switched to Afinitor and kept on the Faslodex.  I was only on the Afinitor two weeks before they made me take a break because of my white count and platelets.

    I just received a new RX for 7.5mg of the Afinitor.  Have only been on that one day!!  I did have bloodwork done two days ago and my LFT's have started to really creep up along with my bilirubin.  This was before I started the new dosage.  My onc is already talking about taking me off the Afinitor but I think maybe the 10 mg was too strong for me and I'd like to give the 7.5 a chance.  I'm having a liver scan tomorrow (this onc isn't fooling around, that's for sure!).  

    Just wondering if anyone else had this type of experience?  Did you finally settle into the Afinitor or if it's a problem at the start will it continue to be?  Also wondering if Faslodex is the best choice for the combo.  I know a lot of people use exemestane (Aromain)  with the Afinitor.


    I have mets to bones and liver.  This is the first time I'm afraid of the next step.  

    Thanks for any responses,

    mimito3

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