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Afinitor and Faslodex combo

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Hello Lovely Sisters,

Both Moissy and I have recently started this combination, I think it's a fairly new combo. I'm hoping to find others who are on it, or going on it, so we can discuss outcomes and side effects. Please join us,




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Comments

  • NettaGER
    NettaGER Member Posts: 128
    edited January 2018
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    Sounds like a very interesting combi, the study results look quite nice. Good luck! I am looking foward to your future postings.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited January 2018
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    bumpity bump


  • moissy
    moissy Member Posts: 371
    edited January 2018
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    Well, so far, so good for me with Afinitor as of three weeks in. I had previously been on Ibrance and Faslodex coupled with a revolving door of AI's and Tamox. I'm now staying with Fas only plus the Afinitor.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited January 2018
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    Hi. Keep posting on how you are doing on this combo. Following.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited January 2018
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    I’m about 6 weeks in on this combo. I have had very minimal side effects and feel better than I did on previous treatments. At three weeks my TMs stabilized, after they had been going up for six months. My next blood tests aren’t for a couple of weeks. Hoping for a drop. My TMs are usually very telling. I’ll keep you posted.

    Stefanie

  • moissy
    moissy Member Posts: 371
    edited January 2018
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    Stef -- So glad you are doing well on this!

    I started on 10 mg. So far my side effects have been very minor as well. If it stays like this, I'll be thrilled.

    My blood sugar increased on last test, but not a concern as yet. Had one small mouth ulcer--no different than I might have randomly gotten some other time when not on treatment. Healed within a day or two. And sometimes small amounts of blood in the tissue when blowing nose in the morning. That's really been it.

    On the bright side it's motivated me to start walking again so I can notice any potential shortness of breath. Hi, treadmill. Have you missed me?

    On the brightest side, after five months of rising TM's, my markers dropped 15 percent after being on Afinitor for just 12 days.

    So glad your TM's stabilized and wishing you even lower numbers next time around. Seems very likely since you stabilized so quickly!

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited January 2018
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    Moissy,

    Yay us!

  • cure-ious
    cure-ious Member Posts: 2,761
    edited January 2018
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    Steph- So this is similar to Afinitor-Aromasin (AA), but with Faslodex instead of the aromasin?- is there a reason to think that the SEs will be much better than on the AA combo, because that is one treatment I'm looking to avoid. I think after progression on Ibrance-Femara there are good reasons to go with a PI3K inhibitor, and it seems that Afinitor is about as good, if not better, than the second generation drugs. Anyway, can you tell us what your MO has said about the new combination, results they and any have seen thus far?

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited February 2018
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    hi moissey and Cure,

    I changed my username and removed my picture when I found out these posts aren’t really private, and my username was known nickname. But it’s still me.

    So, less side effects because a majority of the bad ones come from the Aromasin side of the AA combo. So far I’ve had hardly any. Blood work next week after 2 months will tell me more. ONC says he’s seen successes on it so far.. but I know the drill..what works for one doesn’t work for another.

    I’ll post after my check up next week with an update


  • moissy
    moissy Member Posts: 371
    edited February 2018
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    OK, Sunset it is! That's an interesting thought on aromasin. During my final months on ibrance, I had also been on faslodex plus letrozole, then letrozole was switched to tamoxifen, then aromasin. But I had no side effects at all when aromasin was added to the mix. So for me, I don't think it would have added any side effects to Afinitor. We're all so different.

    Glad you are feeling well. I really am also. I'm anticipating good results for you next week. Looking forward to hearing good news after your blood work

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited February 2018
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    wooohoooo!! After two months on is combo, my CEA marker, which is my “Tell” did a huge dive.

    Sooo happy today !!

  • moissy
    moissy Member Posts: 371
    edited February 2018
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    Yes!!! So thrilled to hear this and doing a happy dance rumba on this end!

  • moissy
    moissy Member Posts: 371
    edited February 2018
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    My TM’s also have shown a big drop on Afinitor after five weeks. Yay! I was extremely nervous about starting Afinitor because of reading many negative experiences. But it is working for both of us, so it can be effective.

    My side effects have been minimal. Some blood when I blow my nose at times. My cholesterol is higher. A rare mouth ulcer.Not much else that is significantly changed.

    Keeping an eye out for any breathing issues, but so far, no complaints!

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited February 2018
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    Wellok! I hope this keeps up for both of us. I've been starting to feel a little fatigue, but not as much as in the other protocols. I get these little itchy rashes all over. Pretty small areas but I scratch the hem so hard i break the skin. Otherwise it's all good.

    Surprised we are the only ones here..

    :)

  • Anne45
    Anne45 Member Posts: 52
    edited February 2018
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    I just started afinitor, ibrance and aromasin. I started Friday. I hope I have good results too.


  • moissy
    moissy Member Posts: 371
    edited February 2018
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    Anne - Welcome and sending good wishes your way!

  • Anne45
    Anne45 Member Posts: 52
    edited February 2018
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    Thank you Moissy

    Smile

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited February 2018
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    I think that's a new combo, as well. All good treatments working together. I like it. Best of luck and keep us posted.

    Sunset

  • Anne45
    Anne45 Member Posts: 52
    edited February 2018
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    Thank you Sunset. It’s day 3 and I think I have a little rash started on my chest. It doesn’t itch so I am keeping an eye on it

  • moissy
    moissy Member Posts: 371
    edited February 2018
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    For what it's worth, I had Guardant 360 testing done. It showed a PTEN somatic mutation, and Afinitor was listed as a potential treatment. I know on one of the other Afinitor threads, there was some discussion about various mutations and whether Afinitor would or would not be helpful to them. So just throwing that out since my tumor markers have dropped a lot.

  • PrincessPincushion
    PrincessPincushion Member Posts: 43
    edited February 2018
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    I was just recommended to start taking Afinitor and Faslodex today, as my cancer is back on my spine, and now also on my liver. I'm hearing things that are making me a little anxious about this treatment. Those who have been on it a while, are you seeing any results?


  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited February 2018
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    amethyst. I only know a few of us on this combo. Moissy and I both started a couple of months ago and are both having fabulous luck so far, with little side effects . I do know someone else who tried it for a couple of months. Her TMs continued to rise so she moved to Xeloda, where she is doing very well. I, on the other hand, didntget a lot of time off Xeloda. So we are all different. It is certainly worth a try.

    Sunset.

  • PrincessPincushion
    PrincessPincushion Member Posts: 43
    edited February 2018
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    I'll be following this thread. I'm starting on this protocol this month since my Ibrance/letrozole failed. I get my first injections on March 9, and I found out tonight that my insurance approved the Afinitor. Just the next leg on this crazy journey!

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited March 2018
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    made the mistake of using a teeth whitening solution and it ate up my cheek, after months of no mouth sores. Sooo...yeah. 😬🙁

  • PrincessPincushion
    PrincessPincushion Member Posts: 43
    edited March 2018
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    If nothing else, I'm hoping going on the Faslodex and Afinitor will help to level out the one annoying issue I've had with the Ibrance and Letrozole. 6 months ago I was told that my potassium was low, so I started taking a supplement with dinner. 3 months ago, potassium is still low. So now I take a potassium pill with breakfast and dinner. I got the call today that my freaking potassium is STILL low, so I need to start taking that blasted horse pill 3x a day, and start increasing the amount of potassium-rich foods in my diet. I already eat a lot of broccoli and potatoes and sweet potatoes and black beans and bananas! Arg! If it's not one thing, it's another. Am I right?

  • moissy
    moissy Member Posts: 371
    edited March 2018
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    Sunset -Hope your cheek has recovered. How are things going?

    Amethyst - Hope you are doing well on your Afinitor start.

    I’m feeling really well. Blood results next week.

  • PrincessPincushion
    PrincessPincushion Member Posts: 43
    edited March 2018
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    Glad it's going well for you Moissy!

    My insurance is dragging their feet approving the Afinitor. I'm starting to get annoyed! My nurse said she'll start making calls if we don't hear anything by Monday.

    I got my first Faslodex shots this morning. They weren't nearly as bad as I'd worked myself up to believe. Honestly, it's nothing compared to the Zoladex in the belly every month! I've been sleeping most of the day since getting the injections. Is that normal? Other than that, I just need to be careful how I sit, since my sitter is a bit on the tender side.

    Fingers crossed and many prayers that this will start working fast. I was measured today, and I've lost 1.5 inches in height this year. I didn't have much to spare to begin with! A year ago I was just about 4'11". This morning I measured at 4'9.5"! Ack! I'm melting!!!

  • moissy
    moissy Member Posts: 371
    edited March 2018
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    Yes, getting set up with these specialty drugs at first can be so frustrating! Glad you got started on the Faslodex at least. After the first injection, I was very tired also. Whether there was a stress component to that, I don’t know. But never happened to me again after the first time. Glad it went well

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited March 2018
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    Hi ladies. Had some weird news this week ghat kind of puts me on hold until next month. My CEA dropped significantly last month and then popped all the way back up this month. That's never happened we before and we think It might be a fluke with the lab. possibly the drop was incorrect. So now I have to wait for next month for Lansbury and scans. Then I'll have have fuller picture. Ive decided to just act like it's all good..until someone tells me otherwise.

    My cheek actually healed rather quickly using dexametasone rinse twice a day, happy about that.

    Butterfly, I don't getfatigue from Faslodex. Perhaps it's just your body adjusting to it. Let's hope.

    :)

    Sunset

  • moissy
    moissy Member Posts: 371
    edited March 2018
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    Sunset - OK, so we’ll hold the champagne cork for another month. But it will be right here waiting