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Faslodex + Pablociclib(Ibrance) treatment combination -

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Comments

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited July 2017

    I'm so sorry for your loss. Thanks for letting us know.

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited July 2017

    lalady, I am sorry to hear about Steph's passing. My sympathies and wishes for comfort go out to her family and to you.

    Lynne

  • pajim
    pajim Member Posts: 930
    edited July 2017

    Oh no! Naturegirl was such a lovely person. Sigh. My condolences to her family.

  • zarovka
    zarovka Member Posts: 2,959
    edited July 2017

    Wow. What a punch in the stomach. I also started Ibrance in January 2016ish.

    Stay with us Naturegirl ... keep us strong with your presence.

    >Z<

  • Amy-Louise
    Amy-Louise Member Posts: 8
    edited July 2017

    So sad for her family, friends and all of us that she wanted to help with the fight of our lives! I have learned so much from this thread and Steph was always there to welcome a new member and try to calm them! May God bless her, she fought the good fight and is free from pain and worry now! Love to you all! Amy

  • melmcbee
    melmcbee Member Posts: 371
    edited July 2017

    My prayers are with her and her family



  • ninaca
    ninaca Member Posts: 232
    edited July 2017

    Gardener-20- I am just getting back to this thread and read about your heart palpitations. That was my most scary side effect when I first started (I am now on round 10 after a previous break of 5 months after 9 rounds) of the Faslodex/Ibrance combo. I ended up having my dosage reduced to 100 mg, took an extra week off as my ANC was below 1, and finally got to managed side effects. The best thing though has been taking a generic pepcid 20 mg pill every morning, and I started taking my Ibrance in the morning (with food). this was key because by the time I go to sleep I don't have to sit up and feel like I'm having a heart attack (it would start immediately when a lay down). The ibrance works itself out during the day. There are occasional tongue sores, and I get a sore butt (which I use butt paste to soothe it, and am drinking more liquids to help dilute the excreting of the medication). I don't know why the palpitations but they are mostly gone now (once in while they came back briefly). Markers, which are reliable for me, keep going up and down but in a "reasonable" range with Ibrance the key.

    Hope this helps and you are doing better.

    Thank you for the information about Guardian 360 (never heard of it) and the use of changing to a different hormonal if the first one doesn't work. Not standard, yet, but with anecdotal information we can get things rolling. I'm sure the drug company will pay for research if it means more use of their drug.

  • lalady1
    lalady1 Member Posts: 530
    edited July 2017

    NinaCA and others - I would recommend trying the Guardant 360 gene testing to see if you have any mutations that may respond better to one med than another. It will also confirm if your cancer has switched from ER+ to ER-, etc. The best news for me is that I am still ER+/PR+, so we know our options. Nothing special about my genes mutation-wise. The cost was $5800, but insurance paid for all of it. I have a PPO 90:10 plan and have already reached my out of pocket max, so I had nothing to lose. I hope this helps anyone considering their options. Best of luck and long runs on this med. I miss Ibrance + fas! ps My butt lumps are gone.

  • Gardener-20
    Gardener-20 Member Posts: 4
    edited July 2017

    hello all,

    We had family visiting from England, 3 adults and a delightful 13 yr old, for 6 days, so we were busy playing NYCity tour guides. Exhausting but a welcome fun diversion...just completing my 2nd month on IBrance-Faslodex,First month was tuff, cough, runny nose palpitations, maybe this stuff makes my seasonal allergies worse, weird.... this cycle. No SEs, just a sore left buttock?

    But my ONC did tell me I have a variant in my Mets tumor on my liver that shows that Irimidex and Aromisin, may not work well..against a progression...I, of course am pleased that I Brance -Faslodex should be much better...

    So I have mixed relief, but am also sad angry and so curious as to why the Docs did not do a study when it was just a "Recurrence" after 2 yrs in my left axilla nodes, why continue with the same treatment...so I spent 3 yrs dutifully taking my daily hormonal while the cancer was touring thru my body... somehow, this seems like a redundant protocol......why is not any recurrence examined and treated more aggressively. Or, more frustratingly, is it my 3 ONCs who did not GET the fact that my BC was moving south! I have to believe in my team. My second opinion @ Memorial Sloan Kettering said my protocol was correct.. so I don't want to wish my summer away, but I wish it would be September when my next scans are due..

    Thanks,

    Lilylady20



    .

  • Txgatata
    Txgatata Member Posts: 43
    edited July 2017

    image

    Doc is going to start me on Ibrance and Faslodex as soon as I get back from Africa (trip of a lifetime I was not putting off - enjoy the pic!).

    I was on femara then switch to Aromosin because side effects were tough on femara. When I asked if I needed to stay on Aromasin or go back on femara he said no.

    So I have two questions, since I had a recurrence while in the AI, does that mean the AI or any AI won't work and that is why he told me to stop?

    Question 2- I have seen some do faslodex by itself then add Ibrance which extends treatment. Any thoughts as to why doing both right off the bat instead of one at a time?









  • Lillymillie
    Lillymillie Member Posts: 115
    edited July 2017

    txgatata, great pic! Enjoy every minute of your holiday!

    Like me if you progressed on an ai your onc wants to try something that works differently. Faslodex is an older drug but combined with ibrance is proving to work well when an ai fails. They target different pathways. I had 3 cycles and scans were good at 3 mons. Stable and improving..first month of ibrance white blood cells (neutrophils went low and had to stop mid cycle) next two cycles went well. Fatigue to be expected until your body adapts. Best of luck on this combo. Ladies over on ibrance thread very helpful and more experienced than me! Good luck x

  • pajim
    pajim Member Posts: 930
    edited July 2017

    txgatata, first things most important -- have a great vacation!!

    You can do things either way. These days some give the drugs together. When I started Faslodex Ibrance wasn't available. When the scans started looking so-so we added Ibrance and I got another year out of the combo.

    Ibrance definitely adds side-effects.

  • cive
    cive Member Posts: 265
    edited July 2017

    Probably you need both because you progressed on an AI.  I had mets but started on femara alone since I hadn't previously taken an ai.  When I progressed my MO put me on faslodex and Ibrance, because faslodex works differently than the AIs.  For Ibrance to work you also need to be on a hormonal.  So if you do faslodex alone and start to progress adding Ibrance probably won't work because your hormonal has failed you.

  • Txgatata
    Txgatata Member Posts: 43
    edited August 2017

    Thanks everyone! I start on Wednesday. They have also asked me to enroll in the Madeline trial. Anyone else doing that

  • jamiemarie
    jamiemarie Member Posts: 51
    edited August 2017

    Hi all, I saw this mentioned a few times but didnt see if anyone had found a cause or resolution - my apologies if I missed it!

    I had my first faslodex injections on Friday, July 27. The middle of last week I started noticing what felt like a sunburn in one injection area (but not the other!). Now its 10 days after my shot and I still feel it, and seems to be covering a larger area. It feels exactly like a sunburn - burning skin, hurts to the touch. But the skin looks completely normal - no rash or hives or redness.

    Any thoughts? I have super sensitive skin as it is, but its weird its only on one side and not both!

    Thanks!

    Jamie

  • Liwi
    Liwi Member Posts: 249
    edited August 2017
    Hi all I start treating with this combo tomorrow. It's been really helpful reading through this thread. Also has given me good information to outline questions for my appointment with my MO next week.
  • JoynerL
    JoynerL Member Posts: 1,392
    edited August 2017

    Good luck, Liwi! You're wise to keep a notebook with questions for your next MO appointment. I've learned so much of this site, and I grill my doctor with my recorded questions at each appointment.

  • Txgatata
    Txgatata Member Posts: 43
    edited August 2017

    image

    Day 1 in the books! Haven't grown a third eye or howled at the moon yet so fingers crossed. Broke my ankle on the last day of my Africa trip while gorilla trekking which makes for an interesting complication but so far so good. To make you all smile on this Thursday morning here is me being carried off of the mountain in Rwanda.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited August 2017

    Holy cow....at least everyone was laughing and in great good humor about this! Good luck going forward, Georgia girl Txgatata! And no howling at the moon, as we're all trying to sleep!

  • zarovka
    zarovka Member Posts: 2,959
    edited August 2017

    Welcome txgata. No third eye! It must not be working!!!!! Just kidding. Wishing you smooth sailing and efficacy on this treatment protocol. Not mutually exclusive, especially when you approach the whole thing with abundant good humor. You are definitely on the right track.

    >Z<

  • pajim
    pajim Member Posts: 930
    edited August 2017

    Jamie, even though you don't have a rash it could be an allergic reaction of some kind. Try topical antihistamine or steroids? I got a rash a couple of times and those helped. It was a rare occurence, so may not happen again.

  • JFV
    JFV Member Posts: 341
    edited August 2017

    Had my shot on Monday. Wednesday part of my "behind" was numb. Today I have sciatica. Anyone able to get their shots other than very high on their rear end ? I think I need a new shot spot

  • jamiemarie
    jamiemarie Member Posts: 51
    edited August 2017

    Thanks pajim, thats a great idea! I'll give it a try! Its gotten better, but is still there. I just had my mid-month loading dose last week and it didnt make it worse at least. I asked the nurses, but they had no idea what it could be either! I see my MO in 10 days so will see what he says too

  • cive
    cive Member Posts: 265
    edited August 2017

    Supposedly you are getting your shot in your gluteus maxima - aka butt muscle, so they can't move too much or they'll miss it. That's why it's called the fanny pack.Loopy

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited August 2017

    JVF, according to the publication I've linked below, either the dorsogluteal site or the ventrogluteal site can be used. There are diagrams and a discussion about the choice. It also covers why some injections are more "successful" than others. I took a copy of this to go over with the nurses and choose the best site for me.

    Oncology Nurse Advisor. January/February 2013. Large-volume IM injections: A review of best practices

    http://media.oncologynurseadvisor.com/documents/44...


  • JFV
    JFV Member Posts: 341
    edited August 2017

    cive- I do pack a lot of fanny. I'm surprised they found a nerve with all my padding 😄

    Thank you Shetland. I'll go over this with my nurse.

  • cive
    cive Member Posts: 265
    edited August 2017

    I get my injections from medical assistants, not nurses.Shocked  I've had very little bother from them, once I got sciatica because I went out to lunch right after my injection and probably sat too long.

  • nkb
    nkb Member Posts: 1,561
    edited August 2017

    Hello. I am wondering if anyone has read any studies about whether it is better to take Palbociclib 100mg on for 21 days and then need to be off 3 weeks before starting another cycle vs decreasing down to 75 mg. I've seen many people say that the 100mg seems to be as effective as the 125 mg. I've also seen many of you say that you remain on the 100 mg just take 2-4 weeks in between to get your ANC high enough.

    thanks

  • Txgatata
    Txgatata Member Posts: 43
    edited August 2017

    Just got my second dose of fas today and all I can say is yuk! The taste in my mouth is like burnt hair (don't ask how I know what that tastes like) and my urine smells like my mouth tastes. Anyone else experience this and does it go away?


  • pajim
    pajim Member Posts: 930
    edited August 2017

    Hi, yes it will go away. The urine smell used to go away in about three days.

    My mouth feel was due to the Zometa and used to disappear after a couple of hours but that doesn't sound like your issue.

    Drink lots of extra water to push the metabolites out of your system.

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