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Afinitor and Faslodex combo

13

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  • moissy
    moissy Member Posts: 371
    edited April 2018

    Sunset - I’m sorry that you’re having issues. It seems weird that nausea from afinitor would only start later. I wonder if your headaches are bad if they could be causing the nausea? Do you get any headache relief from OTC painkillers?

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited April 2018

    hi Moissy. I’m prone to migraines. I take a prescription med for it that works.They’ve just been really frequent. The nausea doesnt seem related to it, there’s a possibility it could just be a bug. I’m throwing a party tonight (80s dance party). I really hope I feel ok. I’ll take some nausea meds, too



  • moissy
    moissy Member Posts: 371
    edited April 2018

    Well, I hope it doesn’t interfere with your ability to “Moonwalk” tonight. Happy 80’s night!

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited July 2018

    hi ladies. Just checking in. Six (seven?) months on this combo..and still holding. My CEA has nicely dropped two months in a row now, after my cyber knife treatment to my spine. That most likely accounts for the drop, not the meds...but holding steady everywhere else, so I’ll take it. Scans in a month.

    How are you all? Are we all still here on this combo? How is it going? I hope summer is good to all of us. Mine has been good so far.

    A Beautiful Sunset

  • moissy
    moissy Member Posts: 371
    edited July 2018

    I’m still here doing 10 mg Afinitor. Feeling great. My markers have been rising howeverand have a scan next month. My next med is likely abemaciclib or xeloda.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited July 2018

    Moissey, both good choices I think.

    I do hope the scan goes well. Keep us posted.

    Stef

  • moissy
    moissy Member Posts: 371
    edited July 2018

    Stef-- Glad to hear the cyber did its job and numbers going down. Wishing u a good scan as well! My onc said, “We’re leaving u alone for now. Enjoy your summer.” And that I will!

  • PrincessPincushion
    PrincessPincushion Member Posts: 43
    edited July 2018

    Glad to see so many of you doing well on this combo!

    I had my first PET after starting on Afinitor + Faslodex two weeks ago. The results were "mixed" but my MO is calling it a positive. Basically, the spots on my femur, spine, and shoulder blade were brighter, but only by a bit, but the spots on my liver and lung were smaller and less intense. He said the bone mets can "flare" as they fight the treatment, so he's hoping that's all it is.

    Is anyone else having serious trouble with their potassium? Mine keeps going down, despite a potassium-rich diet and supplements 4x a day. I had to get an infusion the day before we left for vacation because they were worried about heart problems while I was away. Good Lord does that infusion BURN!!! My arm is still sore almost two weeks later!

    My family and I just returned from a 10 day cross-country drive from Philadelphia to Colorado Springs. Best thing ever. Well, aside from the dumb idea to go all the way to the top of Pike's Peak when I'm having trouble with my breathing and my blood pressure. I was sick for about 24 hours after that. But... I did it!

    Other than the potassium, and falling in St Louis resulting in a nice scraped knee and some bruising on my hand and hip, and suddenly pain in my shoulder blade where the lesion is (nah, not freaky at all considering my PET), I'm doing okay. I know I don't check in often, but I was working 3 part-time jobs until two weeks ago, and my teenage daughters and my vegetable garden take up a LOT of time.

    Blessings to you all!

    Pincushion

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited July 2018

    PP- I’m glad you are out there having adventures. I too have a teenage daughter..wow is she a barrel of fun this summer......not!

    I never have potassium issues. Must just be my biology (or yours).

    Check in after Aug 12 for my scan results.

    Good luck with it all. Stay well. Keep in touch.


  • PrincessPincushion
    PrincessPincushion Member Posts: 43
    edited July 2018

    Sunset,

    My MO thinks it's in part caused by the blood pressure medicine they put me on last year when my BP went through the roof from a steroid. I'm still on the medicine, and now I'm having trouble with my potassium. But they won't take me off the medicine because my BP is irregular. The last 3 times I went in it was high again. Argh.

    By the way, if you're not asking to sit on ice packs before you get your Faslodex injections, start asking. Icing the area before the injections has made it SO much more bearable!


    Pincusion

  • moissy
    moissy Member Posts: 371
    edited August 2018

    Pincushion —Glad to hear your results were positive and you are having some fun trips this summer! I had a great summer and got some travel in as well. Stef - Hope your scan goes well also!

    I am going to be moving on to abemaciclib and staying on faslodex. My scan was a little worse in the bone mets and one new bone met—and my markers have been going up for five months. I feel great, so onc was struggling to move on, but felt we should. So I got 7 great months on Afinitor with no complaints on side effects. I know this drug has been hard for some and a lot of scary posts about it. But I squeezed some time out of it, never had any lung issues. I felt great throughout, so for me it was a good drug. I feel just as good as I did the day I started Afinitor.

    Wishing you all the best!

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited August 2018

    Moissy, please keep us posted on your abemiciclib and fas combo. I am still hanging in on this one. Scans were stable. I have one active bone met that I may radiate. But it was there before and I have nothing else new....so , basically stable .

    Good luck, my friend.

    B.S

  • PrincessPincushion
    PrincessPincushion Member Posts: 43
    edited August 2018

    Sadly, things are apparently not as positive as we'd thought. I started having pain in my right shoulder, so I was sent for x-rays. The lesion there has continued to grow. I've also begun to have more back pain, where there are lesions, as well as cramping in my hip where... well, I'm sure you can figure it out. They're sending me to the radiation oncologist Monday to determine if the shoulder should be radiated.

    In addition, my liver numbers have been on the increase, so I've been told to stop the Afinitor for now. They'll check liver functions on Monday and decide then what to do. But I have a dreadful feeling that this treatment has been a dismal failure.

    Ibrance + tamoxifen lasted only 10 months. Afinitor + Faslodex failed in 4 months. This is starting to cast some uncertainty on my plans to defy the odds and live forever!

    PP


  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited August 2018

    Princess P,

    “This is starting to cast some uncertainty on my plans to defy the odds and live forever!“. Haha...so freakin true..every time I have to switch a protocol.

    There are SO many you haven’t tried yet. You’ve got choices ahead..and time still.

    Hey, the good news is maybe you won’t have to be a pincushion anymore. When I failed Xeloda I was thrilled because the side effects SUCKED. So.. silver lining?

    Please keep us posted.

    ABS

  • maws
    maws Member Posts: 7
    edited August 2018

    I am elated to find this thread on Afinitor and Faslodex combination as a treatment plan. My oncologist just started me August 1st after my July 26th PET/CT scan showed disease progression with more bone mets and new cancerous nodes in my chest and right abdomen .

    I had been on Ibrance and Exemestane, but the combo did not manage the spread of my cancer. I have been on so many treatment plans since March 2015, but I am still moving along with a quality of life that I know only a loving God is providing. Being 70 years old, I am feeling so fatigued and struggling with nausea; however, as a heart disease patient, I am willing to stay the course for my treatment options are very limited now. Your postings are very encouraging. How are you doing keeping mouth scores away? I have a medicated steroidal mouthwash that is working well and I try to avoid foods that are quite spicy. Haven't had any diarrhea / constipation issues . Hopefully, all will stay well in that area. 

    I do hope the best for you and a successful journey of cancer treatment on Afinitor and Faslodex.  Looking forward to reading future postings.....

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited August 2018

    hi Maws, this is a really small group.

    Only three of us and Moissey just left to try a new treatment plan. Princess Pincushion may be moving along as well... not sure. I'm still here and doing well on A and F for about 8 months now. Save this thread as a favorite so you can keep track of when someone posts. Good luck. Excited to have anew A and F sister on board.

    ABeautifulSunset

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited August 2018

    Oh..... and no real diarrhea issues on this, I also use a steroid mouthwash and do not have issues with mouth sores. Been relatively easy

    Biggest problems for me are itchy skin and painful sandpaper sex.

    ABS

  • moissy
    moissy Member Posts: 371
    edited August 2018

    Princess - I hope by now you have gotten some answers and a plan for continuing forward. Sunset - Hope all continues positively for you!

    Maws - Wishing you much success on this treatment. I found it to be very easy for me. You mentioned the mouthwash. One thing my pharmacist pointed out to me was that my onc had prescribed a mouthwash that had high alcohol content. The pharmacist asked the doc if the RX could be switched to the same dexamethesone mouthwash but one that was formulated without alcohol. The pharmacist felt it would be much easier on the mouth. I only used it infrequently, but found it helpful for the occasional mouth sore.

    I started abemaciclib (Verzenio) plus faslodex about a week ago and so far, so good! Wishing you all the best!

    Moissy

  • Jenflorida
    Jenflorida Member Posts: 11
    edited August 2018

    starting afinitor 5 mg. Next week. Coming off ibrance and fasoldex which quit working after 2 years. Apprehensive about afinitor. First dx 2000. Then stage IV 2014. Started Aridimix for two years then Ibrance combo. Have had a long run.

  • moderators
    moderators Posts: 7,884
    edited August 2018

    Dear Jenflorida,

    Welcome to the BCO community. We are sorry that your breast cancer diagnosis and all that has followed has brought you here but so glad that you decided to join and reach out. We hope that you will stay active here and keep posting. Let us know if there is anything we can do to help you to navigate the boards. The MOds

  • PrincessPincushion
    PrincessPincushion Member Posts: 43
    edited August 2018

    Hey, all!

    Well, still no answers and no definite plan. I've been off the Afinitor for 2 weeks now, and I feel liked crap. My belly is so distended that I can't eat and I'm so short of breath that a lively conversation with my girlfriends leaves me breathless. It's looking like my liver enzymes are still running high even without the Afinitor.

    The next step is yet another PET scan. The earliest they could get is this Friday, which is frustrating. If the disease shows no other progression, then the liver damage is from the Afinitor, which means just moving to a different drug on the same level. If the disease has continued to spread, then the liver damage is from the cancer and we start looking at a more traditional chemo regimen.

    Either way, I'll be moving on from this particular forum in the next couple of weeks.

    I REFUSE to be discouraged. I refuse to consider the what-ifs. I can't afford to live there, even though my brain likes to peek at the brochures now and then.

    I'll keep you updated as I get more information.

    Pincushion

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited August 2018

    good luck, Princess! I'll hopefully see you on some other threads.

    BS

  • CCampbell2446
    CCampbell2446 Member Posts: 1
    edited August 2018

    Hey PinCushion... that's what my mom has been calling herself over the last few months, a pin cushion... my poor mom.. She's ER+ / PR+, HER2- -Shes been battling stage lV now for almost 3 & 1/2 years. The first 3 years and two months were incredible. No side effects and an amazing quality of life at the age of 59. Now since starting afinitor 4 months ago, she suffered horrible mouth sores and then lost her ability to walk or do much of anything. I moved her into my house for two weeks to take off work and take care of her because her knees gave out, she couldn't swallow anything, couldn't sleep more than 8 hours a week, couldn't move without pain and she swears the afinitor started everything but we aren't certain. Anyways, after 2 unbearable weeks nursing my mom at my house, i took her to the emergency room where we spent 41 days in the hospital with a 1 day break in between from being sent to a rehab and coming back because of breathing/ BP problems. She's never had breathing problems or anything irregular about her before the new treatments. So scary. She's now on Faslodex/Xgeva and is 3 months into it but we have yet to see progress. She did get to spend 3 weeks at home in a hospital bed with good days and bad days. We're back in the hospital today because of 2 days of vomiting, extreme fatigue, swollen salivary gland causing her jaw pain and leaving her unable to eat, low blood sugar, hypotension, amongst other things. I know this all sounds crazy. She's my angel, my best friend, my protector and my everything and I haven't left her side once through all of this. We are praying as hard as we can to see some progress. CA 25-27 Tumor markers 2 weeks ago went up from 186 to 850. Oncologists are very dull and not positive at all about it. Haven't been even when she was doing great. Would lose my mind if I could, but I've got so much weight bearing on me to keep her and my dad sane. Would love any advice possible. She's not in much pain anymore... more just nausea and fatigue all the time. Heart rate resting around 105... when up and moving... 135-155. METs to liver, lungs, spine, skull, hip, ribs. Praying for a miracle and any prayers are so kindly accepted. Her name is Brenda. I’m her 27 year old youngest son. My older brother is in jail from battling a horrible drug addiction. Ahh! God bless you in having to go through your own journeys. I pray for peace and comfort to each and everyone of you that reads this. This world can be so cruel.

  • moissy
    moissy Member Posts: 371
    edited August 2018

    princess - Wishing you well and hope your next treatment does well.

    CC- Wow, so sorry to hear all the difficulties your mom has had. I’m sure she’s grateful to have you by her side. The only thing I wanted to throw out just in case you were not aware of it is that Afinitor can cause pneumonitis in some people- which can lead to breathing problems. Saying a prayer for your mom

  • PrincessPincushion
    PrincessPincushion Member Posts: 43
    edited September 2018

    Thanks, Moissy.

    I had the PET today and was feeling pretty good about things.... Until my MO called this afternoon. That's never a good sign.

    I know very few details - he'll go over everything with us Wednesday afternoon when we go it. All he said was, "It's not what we wanted to see. Things are a little worse." And then he asked if I'm having any breathing problems. (Yes, I get short of breath when I walk too fast or go up a flight of stairs... Yes, I cough a lot every morning. My assumption was that it was from the distention I'm experiencing because of the liver mess). The PET showed that there's now fluid in my lung, and he wanted to let me know to go to a different hospital ER if I have a breathing crisis, because the doctor at our normal hospital who drains lung fluids is on vacation until Tuesday.

    So all I know is.... The liver is going crazy because the cancer is continuing to eat me alive, and there's the chance that I could end up in the ER with a pleural effusion (he's going to set up a time next week to have that drained).

    God I'm scared. I'm scared that the draining is going to hurt like hell. I'm scared that he might put me on a treatment that keeps me from living my life. And most of all I'm scared that I'm going to die before my college freshman gets her diploma, or before my high school sophomore gets hers.

    And I'm angry. I'm so sick of bad news. I'm so sick of everyone else getting good news, getting a reprieve, getting years on a treatment that isn't even that bad. I'm sick of always getting the worst of any array of potential outcomes. I'm sick of "There's a problem with your blood work," or "That's not what we want to see," or "Here's another complication that could land you in the ER or kill you. Have a nice weekend."

    {deep breath}

    Anyway, that's where we are tonight. I'll get the full set of gruesome details Wednesday.

    Now, for a good night's sleep so I can enjoy my daughter's weekend visit from University.

    Pincushion

  • MuddlingThrough
    MuddlingThrough Member Posts: 655
    edited September 2018

    PrincessPincushion, sorry for your recent news. I completely understand why you are angry.

    I had thoracentesis 4 times to drain pleural effusions in Jan. I won't say they were fun but they were not bad. You'll sit up, leaning slightly forward on a table with a pillow. They numb the area and I felt a little pinchy sensation while they got started. When the draining was finished I felt a little sore for an hour or two but didn't need a tylenol. I just had a band aid. It was nice to be able to breathe better.

    All the best for you on what comes next.


  • moissy
    moissy Member Posts: 371
    edited September 2018

    Princess - I'm so sorry that you have received a gut punch. I can appreciate all the thoughts you are sharing. It's hard not to go to the worst thoughts. But I know from your signature line and the inclusion of Psalm 23 in it that you know you are not alone. I pray that you will feel love surrounding you as you meet with your doc to forge a new plan going forward.

    I have also had a pleural effusion drained in the past and for me the experience was not bad. Yes, I would far rather have been eating a hot fudge sundae with nuts.... Yes, I would even have rathered to be eating something muchless exciting like a side dish of broccoli ...

    BUT the anticipation was much worse than the actual experience for me. I don't remember experiencing pain after numbing. I hope the draining will provide immediate relief on the breathing issues and I hope your next treatment will be manageable and effective so you can receive some good news very soon. Sending best wishes your way.

  • PrincessPincushion
    PrincessPincushion Member Posts: 43
    edited September 2018

    Thank you, ladies, so very much. I needed to hear that it's not going to be as painful as I'm fearing. I'll admit that it will be nice to be able to draw a full breath again, and to not run out of breath just having a lively conversation with my girlfriends!

    And yes, Moissy, I do know that I'm not alone. I was challenged by a friend of mine (she happens to be an in-home nurse, and has become, to me, a big sister with a medical degree) to start reading a Psalm every night for a week. This week was Psalm 3, and verses 3 and 4 have been so comforting and meaningful to me this week, even before the gut punch yesterday. They say, "But you, O Lord, are a shield about me, my glory, and the lifter of my head. I cried aloud to the Lord and He answered me from His holy hill." It takes me a few days, but I'll get back to being able to focus on my hope rather than my health.

    I know I don't post here often, but I'm so grateful for this circle of suffering sisters. You never fail to lift my spirits!

    PP

  • moissy
    moissy Member Posts: 371
    edited September 2018

    Thanks for sharing those verses with us, Princess P!

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited September 2018

    Princess P, your fear is palpable. We all know what it feels like, so to say we are empathetic is an understatement. It sucks! But hopefully they can find the right protocol and turn it around. I'm glad the ladies who have been drained chimed in with their experiences. The unknown is often worse than the actual. We love you and we are here for you.

    A Beautiful Sunset