Miserable on Ibrance

Jojo71
Jojo71 Member Posts: 51
edited November 2017 in Stage IV/Metastatic Breast Cancer ONLY

Hi everyone. I haven't posted in a while.

I was doing xeloda for the past 7 months. It shrunk my liver and lung mets down to almost nothing, Most of my bone mets disappeared. Unfortunately, two of them started growing again. My liver mets were still shrinking. I thought I should stay on xeloda as long as it was still working on the liver mets, but my onc said I need to switch. She put me on Ibrance and Femera.

It's been less than 2 weeks and I am completely miserable. I've had a runny nose since about the second day. I now a lot of people said the SE get better, but it's getting worse. I'm coughing a lot, and last night my nose was so stuffy I couldn't sleep. Cold medicine doesn't seem to do anything. Has anyone else experienced a SE like this?

I'm really depressed at the thought of not being able to get a good nights sleep again for months or even years. I don't feel like there are any good options...the onc seems to think tamoxifin won't be enough. So the other option is chemo...which scares me to death.

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited April 2016

    Jojo,

    I use an over the counter nasal spray, like Flonase, for the stuffy nose. Don't get hooked on the Afrin-type sprays. It takes a few days for the Flonase-type sprays to work, but they do. Talk to your doctor about taking an over-the-counter allergy medicine as well. Without Allegra, I would not be able to breathe through my nose.

    Also, for the time being, try sleeping on your side, if you can. That way, one side of your nose will usually decongest (gravity!), and it is better than nothing.

    Don't be scared of chemo. Xeloda is chemo :) Frankly, I'm feeling better on Halaven than I did on Femara/Ibrance. The joint pain was awful - everything hurt.

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  • Jojo71
    Jojo71 Member Posts: 51
    edited April 2016

    So you're telling me it's not going to get better? What about during the week off?

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited April 2016

    Jojo,

    It will get better if you use the Flonase-type spray :) As to it resolving without medication, I don't know. Is there any chance that it is actual allergy symptoms from it being Spring? I have crazy allergies, so sometimes I can't tell what is an SE, and what is allergy.

    Make sure you are taking a good decongestant - get some names from your nurse. An antihistamine stops your cells from reacting to allergens, but a decongestant actually shrinks the nasal tissue down a bit and dries you up. That sounds like what you need. If you are desperate, try the Afrin nasal spray. But, do not use it for more than two days, because it can give you "rebound" syndrome. You'll end up needing more and more to control nasal congestion. However, if the nasal congestion is making you crazy, give it a limited try. I was hooked on the stuff for years as a young woman, because I can't stand having congestion. It took a good allergist to get me free of the stuff.

    Hope you get some relief soon. I completely understand why you hate the congestion.

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  • Jojo71
    Jojo71 Member Posts: 51
    edited April 2016

    I don't think it's allergies...this is to the point of being a really bad cold. I'm even coughing stuff up. I will try the Flonase, but I'm thinking about quitting Ibrance if it doesn't get better. I am taking an anti histamine and decongestant combo. It doesn't seem to make any difference. I can't even function right now. I need sleep!

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited April 2016

    Jojo,

    It never got better for me. It didn't work for me either, so I had to move on. If this is working for you, then work with your team to figure out how to make the drug tolerable for you.

    Wishing you all the best,

    *susan*

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  • Jojo71
    Jojo71 Member Posts: 51
    edited April 2016

    Thank you, Susan . I just started it, so I don't know if it's going to work or not.



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  • letmywifelive
    letmywifelive Member Posts: 360
    edited April 2016

    Hi all,

    My wife started taking Ibrance 2 weeks back and today her lab work showed the following numbers

    WBC 1.5 K/uL

    NEUT, ABS 0.51 K/uL

    LYM, ABS 0.86 K/uL

    MONO, ABS 0.07 K/uL

    Platelet count 106 K/uL

    Onc told her to hold off for one, check the numbers again and then decide. Has anyone faced such situation ? She underwent radiation to her pelvis which lowered her numbers below normal (but not this low) a couple of weeks before she started Ibrance.

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited April 2016

    Jojo,

    I was completely unaware that this sort of upper respiratory was an SE of Ibrance. Please forgive my ignorance! That explains so much. I had thought that my sinus stuff was because I was too tired to clean. I'm super allergic to dust, so I made that assumption easily.

    I will say that the Flonase helped, because I ran out at one point, and the symptoms got much worse. I also took Allegra on a daily basis. Ran out. Symptoms got worse. Went back on. Things got better.

    I've also been elevating the head of my bed. And, I bought one of those fancy cold caps that they use for preserving hair during chemo, but I use it for the sinus headaches. It gets the whole scalp and forehead, and really helps when you get a sick headache that takes over your entire skull. They are pricey ($80), but it is one of the few things I've gotten for this stupid illness that actually helps. Don't we all have a museum of stuff we bought, thinking it would help, but it doesn't really, so we shove it in a drawer and try very hard not to think about how much we spent?

    What does your medical team say? There are prescription versions of decongestants and allergy meds that are stronger than the over the counter stuff, so they might have to whip out the old pad and pen, and get you on the road to feeling better. Decongestants help with the mucous and nasal inflammation. Expectorants are great for getting the goop out of your chest. If you are getting that tight feeling, then hawking up goo and feeling relief, an expectorant will make the process easier. Anti-inflammatories like Ibuprofen also help with the nasal discomfort. But - you are on Ibrance, so you need to get medical permission to take an NSAID, because of platelet issues.

    Hoping you feel better soon. And, again, so sorry I was an ignorant goober.

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  • Zillsnot4me
    Zillsnot4me Member Posts: 2,687
    edited April 2016

    I've had the stuffy nose too and it is a most bothersome SE. My scans were better than expected so I'm putting up with it. It gets better your week off. I do use Flonase regularly.

    I seem to have caught a cold or allergy flare this last time. Talk to your nurse and let them know how miserable you are.

    I use a Jin Shin Jytsu technique to reduce the stuffiness. Put your right fingertips under your right cheekbone. Put your left fingertips on your right collar bone. Hold for several minutes. I usually get some movement. Repeat on left side to clear it out too.

    I sleep propped up on two pillows and use Vicks.

    Good luck.

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  • stephaniedoowop
    stephaniedoowop Member Posts: 1
    edited November 2017

    been on it 2 years and it has done its job...i think you have a cold of some sort...the worst side effect is low nutriphil counts and white cells...wich makes u more apt to get sick... Doc will give u breaks if you get ill or need any proceedures ....u have to def wear your masks u get into your 15 day on....it has done well with keeping cancer at bey

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  • cive
    cive Member Posts: 709
    edited November 2017

    Stephanie, this thread has been in-active for well over a year.  Here is a link to the very active Ibrance thread.

    Ibrance

    Looks like you've had a pretty good run.

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  • Chicagoan
    Chicagoan Member Posts: 728
    edited November 2017

    JoJo-I had a runny nose on Ibrance for 4-5 months. I had to keep kleenex with me at all times but eventually it went away. To me it was no big deal b/c after a month it was clear that Ibrance was effective in shrinking my cancer. I recommend drinking a lot of water-72 oz per day and staying away from caffeine and alcohol to minimize sleep issues. For some reason, I seemed to become more sensitive to caffeine on Letrozole/Ibrance. I found that almost all the side effects except for mild fatigue and cracking nails went away after some months on Ibrance. Good luck with whatever treatment you choose.

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

    This is great news for me!! I thought the stuffy nose was due to the tumor cells “seeping out of my nasal cavity” despite the fact that my tumor markers are down. BC.org ladies rick

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