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The party’s over…

13 years was a good run but all good things must come to an end. Will be heading to see my mo in about an hour to review latest PET scan, which was not posted in the patient portal ☹️.

Yes, I have been having pain/soreness in my back and the CT I had during my kidney stone episode showed a healing fractured rib as well as ground glass lung opacities. Beyond that, I’ll just have to wait until my appointment. I knew this was inevitable and my feelings are all over the place but I’m trying to not speculate and wait until I have more concrete info. Don’t know if I will be back to elaborate later as I try to absorb things.

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Comments

  • threetree
    threetree Posts: 2,024

    Exbrnxgrl - So sorry about the anxiety producing symptoms - doesn't always mean what we think it might. Sending hugs, and will be in your pocket.

  • exbrnxgrl
    exbrnxgrl Posts: 5,463

    Thank you and I would be inclined to take your POV if it weren’t for the fact that my mo withheld results from the patient portal and her office contacted me for an immediate appointment.

  • threetree
    threetree Posts: 2,024

    I know what you mean, but there's always hope. Fingers crossed for at least a reasonably good appointment.

  • sf-cakes
    sf-cakes Posts: 651

    Let us know how your appt went, when you feel up to it. Thinking of you ❤️

  • sending good thoughts your way

  • aprilgirl1
    aprilgirl1 Posts: 813

    We are here for you ! Let us know how your appt went and what your MO recommends .

  • alicebastable
    alicebastable Posts: 1,961

    Thinking of you, @exbrnxgrl .

  • Thinking of you, too, @exbrnxgrl.

  • chico
    chico Posts: 203

    Exbrnxgrl wishing you good luck with your results.

  • moderators
    moderators Posts: 8,941

    @exbrnxgrl - We’re thinking of you as you head into your appointment and hoping for the best possible news!

    The Mods

  • Exbrnxgrl, knowing progression might happen some day in no way, shape, or form prepares you for the shock of it actually happening. I hope your new treatment is easy on you and puts this beast back to sleep!

  • @exbrnxgrl Those first graders are lucky to have you, and I hope you see many, many more.

  • threetree
    threetree Posts: 2,024

    Exbrnxgrl - Thanks so much for letting us know what you learned. Ibrance and Faslodex can a do a person good for quite some time, so I think you will be able to see many, many more first graders in the times to come. Wishing you all the best as you start this new treatment plan!

  • cookie54
    cookie54 Posts: 954

    @exbrnxgrl Sorry to hear of your progression, none of this is ever easy! May this next treatment kick it back for many more years! Hugs.

  • seeq
    seeq Posts: 1,204

    @exbrnxgrl - sorry to hear about your progression. Inevitable, or not, it still stinks. I hope the faslodex/ibrance are gentle and effective for you. Sending virtual hugs.

  • cowgirl13
    cowgirl13 Posts: 792

    @exbrnxgrl thinking of you.

  • harley07
    harley07 Posts: 422

    @exbrnxgrl - thinking of you and sending virtual hugs.

  • exbrnxgrl
    exbrnxgrl Posts: 5,463

    malebreastc,

    Thank you for your comment. It was very encouraging and I have read similar stories about this drug combo. I think I am still a bit shocked by the progression but I had 13 progression free years. I always knew it was inevitable but 13 years made me complacent. I’m a bit scared of the Faslodex, as I have needle phobia and am very skinny with little padding in the injection area. Many, many years ago when I was a Peace Corps volunteer, we had to get gamma globulin shots (for hepatitis) every three months. It is a refrigerated thick serum given in the buttocks. That’s my point of reference on these type of injections. My first loading dose is this coming Monday.

    The Ibrance is back ordered but should be here next week. I almost fainted when I googled the cost 😱, but Medicare will cover it. Still trying to work part time as it’s good for my mental health. I am a retired teacher but sub regularly in my former district.

  • exbrnxgrl - progression is always a gut punch but hopefully the treatment will keep things in check. I had was dx MBC in June 2019 (original dx in 1989, age 34) and have been stable on Ibrance and anastrozole since then. I think you will find hopeful info on these boards to help you come to terms with dx. I encourage you to visit Mel’s living room (for MBC). It is a great place to vent but get lots of support. We are here for you in your journey - HUGS!

  • exbrnxgrl
    exbrnxgrl Posts: 5,463
    edited February 26

    Thanks! I have been a bco member since 2011 after my de novo stage IV dx. I participate in many threads and am fairly active here so am well aware of potential support. Not a newbie at all!

  • chicagoan
    chicagoan Posts: 1,162

    exbrnxgrl-Sorry to hear your news. Hope that you find Ibrance/Faslodex easy to tolerate. I've been on Ibrance/Letrozole for 8 1/2 years-pretty much a piece of cake for me. Lots of fatigue and a little hair loss the first few months but then my body adjusted. Have no serious side effects-just some stiffness from the AI's. I also usually am in Stage 3 neutropenia but rarely get sick even though I am often in large groups of people. Wishing you all the best!

  • sf-cakes
    sf-cakes Posts: 651

    Like others, I've been on Ibrance for a while now (on my 50th cycle), and my main side effects are feeling more easily fatigued, and thin hair. But today I took a good, strenuous walk (got all sweaty, which feels good), planted a new lilac bush from the local nursery, picked up two newly framed prints at the framers, and ate a scrumptious slice of veggie pizza. I'd rather not be on these meds (I'm on letrozole not faslodex, as I'd never been on an AI before), but am grateful life can still be pretty good.

    And the cost, yes, sheesh. My retiree health plan is $100 copay for the Ibrance, as it's considered a "specialty" med, but that's still quite the bargain!

  • exbrnxgrl
    exbrnxgrl Posts: 5,463

    sf-cakes, I was floored by the cost 😱. I’m on Kaiser’s Advantage Plan. Yes, even Kaiser has to go to a specialty pharmacy for Ibrance and I’m still waiting on a back order. Did I mention that I’ll be getting an echocardiogram before the first Faslodex? Fun morning at the Kaiser Santa Clara Medical Center 😩

  • ExBronxGirl, I’m so sorry to hear this news. I never imagined that such a small spot would spread after 13 years. I can only imagine how tough this must be for you, but I’m so glad that there are more treatment options available now than there were back then. Wishing you many, many years of staying active, strong, and witty as ever.

    What led you to get the scan? Do you think exemestane has been keeping things at bay all this time? Thinking of you and sending you all my support.

  • gailmary
    gailmary Posts: 573

    @exbrnxgrl

    Also grade 1 here, only 1bone met. So much like you. 7 yrs progression free. Only 1 with ibrance. 6 just faslodex. Due to go back on it after inteterruption for 6 mo chemo for new primary of tnbc.

    Best of luck.

  • exbrnxgrl
    exbrnxgrl Posts: 5,463

    @gailmary , Ibrance was still in trials when I was first dx’ed. Besides rads to the original bone met. AI’s and a few years on a bone strengthener, my body is relatively drug naive. There’s some thought that this could work in one’s favor.

    Not going to pretend that I’ve calmed down because I haven’t (maybe a tiny bit). It is still overwhelming. And the cost of Ibrance? Another staggering fact. I understand the patent will expire in 2027.

  • @exbrnxgrl That's really interesting about the Ibrance patent. I know that Kisqali is (or at least was) something like $15,000 a month, which is apparently one of the lower cost meds in cancer world. I do want to thank you for your strong, calm, knowledgeable presence on this board over these many years, in this moment, too, when you are facing this bad news.

  • threetree
    threetree Posts: 2,024

    Yes, very interesting that maybe we can have some generic CDK4/6 drugs in the not too distant future. That would be a huge help.

    Exbrnxgrl - Continuing to send you the best of thoughts and remain in your pocket.

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