Ibrance Arrived and...I'm Scared

azs40
azs40 Member Posts: 99

Well, it's here. On my kitchen island with big "toxic" stickers everywhere. I thought I would be relieved. Starting on it might mean the end of all this weird pain and fatigue. Instead, I'm scared s-less to take it. I'm someone who doesn't take Tylenol unless it's absolutely necessary. (I'm not quite sure how I got through chemo 9 years ago.) I feel like my body has betrayed me. I don't trust it.

So, please ladies. A little suppprt. I don't like the 10 months disease free progression. I want so much more. I want to be here for the big "Jimmy Carter miracle drug," I want to see my girl into adulthood.

I'll do what I need to do, but can anyone tell me how long til it kicks in? Did anyone feel a difference in pain/symptoms relatively soon? Does anyone have advice on taking it? When is it better to/does it matter? I'm taking the Ibrance/Faslodex combo since I was on Femara/letrozole for 8 years pre- mets.

My husband says to cast my net. I'm casting.

Many thanks

Comments

  • 50sgirl
    50sgirl Member Posts: 2,527
    edited December 2017

    azs40, When I started taking Ibrance and Faslodex 16 months ago, I was very reluctant to start. Like you, Until my MBC dx, I never took any medications with the exception of an occasional Tylenol. The Faslodex didn't worry me, but all those SEs listed for Ibrance made me think that I would become a sickly shut-in. Well, I am here to tell you that I feel great. Faslodex and Ibrance has been a really easy combo for me. My blood counts did drop way too low during the Ibrance first cycle, and my MO dropped my dose to 100 mg. Since then there have been times when I needed a 2 week break rather than 1 so my counts could rebound, but those times have been few. You might have read that low white cell counts would make you susceptible to frequent infection. To that I say hogwash. Infections have been uncommon for those of us on these boards. I have not been sick at all. My scans after three months showed improvement in my liver and bone mets. After 6 months on the combo, there was even more improvement - 2 of the original 3 liver mets were no longer visible, and the third one was tiny. Everyone's experience is different, but my advice to you is, "Just do it!!" As far as timing is concerned, it doesnt't really matter what meal you take it with as long as you take it with food at about the same time every day. I have found it easiest to take it with breakfast since it is the one meal that is consistently at about the same time.

    Good luck. Come join us on the Ibrance thread and the Faslodex thread. The Faslodex thread has some good tips for what to do when you have the shots. Those tips are at the beginning of the thread.

    One last thing, many of us live for a long time with MBC. Don't pay any attention to those outdated stats you might have read. We are not data points here. We are living, breathing people -individuals. I, for one, and planning to be around for a heck of a long time

    Hugs and prayers from, Lynne

  • azs40
    azs40 Member Posts: 99
    edited December 2017

    Lynne...thank you.

    xo

  • pajim
    pajim Member Posts: 2,785
    edited December 2017

    azs40, I took Faslodex for four years. Ibrance for the last year of it -- once it was approved. Yes, the pill box looks scary. Yes your neutrophil level will go down.

    But I never had any fatigue or any other problems. Some ladies do, some don't. Don't assume you'll have a hard time. Don't worry too much about the PFS stats in the Faslodex/Ibrance trial. We are all individuals and those are population data.

    I haven't had mets symptoms so I can't comment on how long until they are better. [Well I did have symptoms, but the spinal fusion took care of them, LOL]

    You can do this!

  • MJHJAN1014
    MJHJAN1014 Member Posts: 708
    edited December 2017

    azs40, I had 16 cycles of Ibrance/Letrozole. It is very tolerable! I felt like a new person in about a month. I had intense bone pain at diagnosis of MBC, and it was gone! White blood cell count will go down every cycle, but I never had an infection. Biggest side effect is fatigue. then joint pain from the hormonal therapies. You can do this! It's nothing like the original IV chemo. Take with food. Full speed ahead and damn the torpedos! Love MJH

  • Grannax2
    Grannax2 Member Posts: 2,551
    edited December 2017

    I clearly remember the day that the big box was delivered to me. It was scary to swallow the first pill. It's not about being brave, it's about making decisions. I have a very long history with B.C.

    ., which included lots of harsh chemo. I didn't know a pill existed to treat MBC till last December DX. In comparison, after i got over the shock, I decided it was worth a try. Guess what? It's working. Yes, some days SE are bad, some days not as much. I'm almost one year on Ibrance/ femara. I have mets in lung ,chest and liver.

    I still get to do all of the things most important to me. Last night I went to a musical starring my granddaughter! I'm sure will get to do your favorite things, too. Probably for years to come.

  • azs40
    azs40 Member Posts: 99
    edited December 2017

    Thanks again ladies for all your responses. I took the first pill last night and haven't exploded yet ;-). Looking forward to it kicking in and feeling like my self again.

    You're all wonderful. What a great "net" you are.

    xo

    -A

  • Felrogyahoo
    Felrogyahoo Member Posts: 6
    edited December 2017

    The responses you've got have been reassuring. This treatment is relatively new for me. I'm on my 7th cycle Ibrance/foslodex. My three month scans showed containment. Next scans are scheduled for January 2018. I am pleased. My side effects are minimal. The worst is itching on face and neck, it comes and goes during each cycle and seems to be easing with each cycle. My WBCs drop, as expected, then they rise again. Slight fatigue and loss of appetite round out my side effects. Over all I feel good and not limited in physical activities. Give it a chance.

  • Iwillwinthisbattle
    Iwillwinthisbattle Member Posts: 1,076
    edited December 2017

    I just completed my second round of Ibrance/Faslodex and my tumor markers are down for the second time and are now in the normal range!! It works. I’m a bit tired the last two days of my “cycle” but am still able to work two jobs and be a full time single mom. It’s been very doable and, more importantly, successful!!

  • azs40
    azs40 Member Posts: 99
    edited December 2017

    Thank you Iwillwin. I'm working full-time too. I took my third Ibrance pill last night. Had Faslodex injections last week. I don't know which one is working, or if it's just wishful thinking, but I feel a little better. Muscle spasms in my back - that were circulating from one spot to another for the past 6 or so weeks - are greatly reduced. I can move! Don't want to jinx anything, but I'm praying something working.

    Thanks for you reply!

    xo

    A

  • spicedlife
    spicedlife Member Posts: 182
    edited December 2017

    Hi ladies, Thanks for posting all the good news. I start the ibrance/faslodex combo today. I think that is what it is! A shot once a month and then some pills that are delivered to my house. I am a little terrified too. I couldn't sleep last night and I have felt sick to my stomach since I was diagnosed with the mets. It's way worse right now! I don't know if any of you deal with this but I also have clinical depression and anxiety so that is what I am most concerned about. I can't handle anything making it worse.I also work full time and need to be there and not be dulled in my thinking ( that happened with chemo)

    I will go at this with some happy / positive thoughts now.



  • pajim
    pajim Member Posts: 2,785
    edited December 2017

    azs40, that's excellent! So glad to hear you're starting to feel better almost immediately. Kill those cancer cells!

    Spicedlife, good luck to you!


Categories