Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Ibrance (Palbociclib)

1…529530532534535…945

Comments

  • nkb
    nkb Member Posts: 1,561
    edited February 2019

    Jaylea- thinking of you tonight.

    my left over foot neuropathy (from chemo) got much worse on Ibrance, it progressed up legs and newly in hands It is better off Ibrance for the last 5 weeks. Hoping for reversal for you

  • Chemokaze
    Chemokaze Member Posts: 177
    edited February 2019

    Jaylea - just came across your news as I am watching the Oscars tonight. You’re in my heart and I just know they will figure this out for you.

  • nonahope
    nonahope Member Posts: 695
    edited February 2019

    Jensgotthis....I'm obsessed listening to podcasts...especially, true crime. I just finished "Cold"...wow! I would love some suggestions for others...I've listened to "Dr.Death" and "Dirty John". They are addicting.

    Hope

  • novagirl
    novagirl Member Posts: 82
    edited February 2019

    Jaylea that sounds awful I'm so sorry. I hope you this can get resolved for you and as others have stated I hope it's not the Ibrance.

    I do have chills in fact I have a heating pad on my feet as we speak. I've already tried soaking them in hot water. A hot flash will be along soon enough I'm sure.

    I'm also getting burning in the middle of the night on my groin muscle. My MO said it is likely neuropathy and have me Lyrica. I'm really struggling with insomnia. I take 20 mg of melatonin, 1/2 unisom tablet, 25 mg of trazadone, and CBD oil tincture.

    Does anyone have any other suggestions

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited February 2019

    Novagirl, I take 0.5 mg of Ativan at bedtime. Works for me. I wouldn't add it to all that other stuff. You need to pare that down. The Unisom probably isn't doing anything. 25 mg Trazadone is pretty low dose and not to be mixed with Ativan. I use a prescribing therapist for Ativan rx. This issue needs to be discussed with a healthcare provider. Sleep is so important.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited February 2019

    hi everyone - just a little check in to see have everyone is doing?

    I feel like my tummy has been a bit upset the last couple weeks...one and off again diarrhea and just feel very gassy and like my stomach has been more “noisy” than usual, also feel like my appetite is coming and going and slight slight nausea at times. I’m on cycle 22 of Ibrance and letrozole and also do take Lupron injections to induce menopause as well as Xgeva for my bones, and now on Lexapro for my mental health.

    I know it’s A LOT in my small system - I’m not a big person and I am wondering if the Ibrance is taking a toll on my GI? Anyone else get this?

    Hugs!!!!

  • VeryConcerned
    VeryConcerned Member Posts: 2
    edited February 2019

    Cure-ious, thanks so much for your clarification that Ibrance seems to be helpful in immunotherapy.

    You and our friends in this group may like this MDA study about how HCQ boosts and prolongs the response to Ibrance, and prevents and reverses resistance in metastatic breast cancer mice even at low dosage.

    pdfs.semanticscholar.org/4a31/6ce4a80967a8dc925fe458744ff49e97bd53.pdf

    NATURE COMMUNICATIONS | 8:15916 | DOI: 10.1038/ncomms15916 | nature.com/naturecommunications

  • PatgMc
    PatgMc Member Posts: 1,312
    edited February 2019

    LovesfromPhilly, I'm so sorry your GI tract has been hijacked by Ibrance. Mine too. However, I had a perfect day on Friday with no heartburn and no nausea. It was such a gift as my granddaughter's chorus concert was that day. I hope you're soon blessed with just such a day, my friend.

    I recommend my good old stand-by, natural yogurt.

    Love from PatGMc

  • Amica
    Amica Member Posts: 237
    edited February 2019

    Just wondering if anyone else is on 75 mg dose?

    I started in late September 2018--- Cycle 1 - 125 mg, Cycle 2 - 125 mg, Cycle 3 - 100 mg, Cycle 4- 100 mg, but now, by Cycle 5 I'm at 75 mg because my absolute neutrophil counts were failing to reach 1000, and they had to keep giving me weeks off to let it go back up. Even when it recovers, I am lucky if it reaches 1000 or 1300.

    I've had major problems with fatigue and weakness, and felt a bit better when it went down to 100, but have not noticed less fatigue at 75, and fatigue remains a major problem. I wanted to enjoy travel and visit friends in the time I have left and now i'm too tired and in too much pain to do anything. It's not going the way I was hoping. I have inoperable tumors. I have a very dismissive oncologist who doesn't care that I'm in pain and tired, and has not offered me any help or suggestions, let alone medications to ameliorate my side effects. I was on hydrocodone ages ago for early BC years ago, had many surgeries and procedures, and went through the whole experience with zero pain, and never got addicted, so I don't see why I can't be prescribed hydrocone now, but from what I have intuited my docs are very resistant to opioids. When I've asked about pain relief they keep mentioning Tylenol or Gabapentin (the one drug I'm allergic to), and mindfullness. I already take 4000 mg Tylenol a day, do yoga and meditate and chant for hours a day, I don't think I can do much more on that end. I'd rather live out my last few years pain-free and addicted to hydrocodone, I don't see the big deal. They also would not prescribe Ativan to help with sleep because OMG what if I got addicted?! Again--so what.

    Today I called the onc's office about Level 8 pain, and I didn't even get a return phone call.

    I blame this 100 % on terrrible Canadian healthcare because I was never treated like this in the U.S. where I was treated before.

    Jaylea - I am very sorry about the feeding and digestive issues you are suffering through --hoping very much for you they get fixed.

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited February 2019

    LovefromPhilly,

    How long have you been on Lexapro? These same GI symptoms you mentioned are listed as Lexapro side effects. Just throwing this out there for you to consider.

    Gumdoctor

  • cure-ious
    cure-ious Member Posts: 2,892
    edited February 2019

    VeryConcerned,

    Thanks, how very interesting, I had not seen that paper! Do you know if there any supplement or dietary change that can inhibit autophagy, as HCQ does? Obviously, anything that might extend the time to progression is the name of the game here!!

    PS I think this link works for those who want to see the paper: https://pdfs.semanticscholar.org/4a31/6ce4a80967a8...


  • Kayla250
    Kayla250 Member Posts: 125
    edited February 2019

    Good evening all, I find myself thinking of Jaylea and wanted to stop in and see if there's an update. I hope you are on the mend and that you are able to eat and gain your strength.

    Rosie24 yes, getting a good scan back is refreshing in this crazy world of mbc.

    LovefromPhilly I do see a few people mention tummy GI troubles. In fact, my doctors and I, are trying to trace the cause of some middle/upper quadrant pain and I am currently awaiting a scope to investigate a possible ulcer or hiatal hernia. Which makes sense than to try your suggestion, Miaomix, digestive enzymes, maybe that'll do the trick!

    Amica, I am so sorry you are in pain and doesn't seem to be being addressed. I, too, am in Canada but my doctors have been very supportive of pain Rxs and because of my history, I'm 55, I've never had addiction problems and I voiced my worry of becoming too tolerant, I have been given an “at home pain management plan" to deal with breakthrough pain, which prevents the need for ER visits. Relief is out there keep trying to get your pain addressed properly

  • Amica
    Amica Member Posts: 237
    edited February 2019

    I agree with Gumdoctor--I tried to go on Effexor -- had severe diarrhea and stomach problems, --I could not tolerate it whereas in the past I could tolerate just about any anti-depressant. Our bodies are so much more sensitive now on the Ibrance.

    thank you kayla250. I think it's the luck of the draw as to what doctors one has, and their attitudes towards opioids. I know one thing, no amount of meditating or chanting is going to take this pain away and I've spent months suffering, getting very tired of it.


  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited February 2019

    Lovefromphilly: I am lactose intolerant. If I do not take Lactaid or similar before consuming dairy, I get the symptoms you are describing. Maybe try them to see if that helps. Someone also mentioned trying digestive enzymes. Always let your MO know in case it is something he/she needs to investigate. I am completing month 27 on Ibrance.

  • cure-ious
    cure-ious Member Posts: 2,892
    edited February 2019

    Very Concerned, I see that eugenol, which is enriched in oil from cloves, nutmeg or allspice, has been shown to inhibit autophagy and also was independently shown to block breast cancer cell growth and down-regulates E2F and cycD1 in cultured cells. Can't make our own drug based on that, but I will be adding generous amounts of clove and those spices to my hot tea, thanks!!

  • karpc
    karpc Member Posts: 192
    edited February 2019

    ~Candy and others with chills 'cold flashes'. I get them too. They started in 2016 during chemo which put me in chemically induced menopause. I would be so cold for hours. Only a hot flash could warm me up. I still get both hot and cold flashes. The chills are more sporadic but can last for hours. The hot flashes happen often but come and go quickly. I read somewhere that the falling estrogen levels which effect the hypothalamus in our brain and which is responsible for temperature regulation is the cause of both our hot and cold flashes. Chills may also be caused by low levels of neutrophils. My neutrophils are often low from my treatments. The neutrophils defend our bodies from infections.

    ~Novagirl and others with neuropathy, I got peripheral neuropathy from chemo in 2016. It improved the following year but never went away. This past year on Ibrance it has become progressively worse. My stomach can not handle mixing drugs so I try not to take any drugs other than treatment drugs if possible. I did take Gabapentin to address the neuropathy for a while after my first round of chemo. I was on a low dose and not sure if it helped. I took it at night and it did make me a bit drowsy which was nice before I went to bed. I would agree with Jaycee that a small dose of Ativan at bedtime may help and that you should see your doctor about this and let her know what else you are taking. I've been told that Ativan should not be mixed with many drugs, mainly those that help you sleep. Ativan can help with neuropathy, relaxation and help you sleep.

  • MuddlingThrough
    MuddlingThrough Member Posts: 655
    edited February 2019

    Cure-ious and VeryConcerned, that is a very interesting article. Lots of us are already on I and L. So, adding HCQ (hope I have the correct abbreviation?) and lowering Ibrance to 75mg (in my case) would be easy to do. Keep us posted please!

  • jensgotthis
    jensgotthis Member Posts: 673
    edited February 2019

    nonahope, here are some of my very favorite true crime investigative podcasts:

    In the Dark (both seasons)

    Up and Vanished (especially season 1)

    Monster (especially season 1)

    Caliphate (different than the above but incredibly done)

    Serial (season 1 and season 3)

    Sworn

    S-town

    Murder Book (this one is by Michael Connelly - weird to hear his voice after reading his books for so long)

    Cold (first popcast to give me bad dreams - wow)

    West Cork (available on Audible but it’s essentially a popcast, added benefit of Ireland setting




  • novagirl
    novagirl Member Posts: 82
    edited February 2019

    Jaycee and KarPC thank you for the Ativan suggestion. I received that in my IV during chemo when I was early stage it was very calming! I've had terrible insomnia for years and I've always been able to just push through go to work, drink coffee, etc. It's completely different now. I can't get my body to push through. I'm going to address my sleep problems because I know it's essential for healing.

    KarPC, I had no idea Ativan can help with neuropathy. I'm sorry your neuropathy got worse with Ibrance. I didn't have neuropathy from my earlier chemos. My MO says it's from damage from bone Mets in my spine.

    Amica I wish you could get relief from your pain. That's infuriating that your MO's office won't give you Ativan or pain meds because of addiction. That seems cruel. Are you able to see a pain dr instead of MO

    Curious, is it a possibility to ask our MO for a r for HCQ? I’m sure it’s be hard to get them to agree but if the side effects are minimal I wonder why we couldn’t just take it? I take metformin for its anti-cancer abilities.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited February 2019

    thanks everyone for your thoughts and input on the tummy issues.

    PatMcG yes it comes and goes! I am loving plain grass fed yogurt more than ever these days. Someone (maybe you?) had suggested it for mouthsores (Greek yogurt) and I haven’t had any since (Knick on wood!).

    Gumdoctor - I was also wondering about the Lexapro as I do see that as having this side effect. But I guess I thought it wasn’t supposed to continue after the initial couple of months of getting adapted to it? I have been on it for about 4 months now I think?

    I feel like all the meds I am on have diarrhea and GI issues listed as a side effect 😂 I guess I’m just screwed!!!!

    Jayea - hoping you are on the mend and feeling better! Thinking of you!!

    Regarding chills - I usually and have always run quite hot. And then top it off with the hot flashes (which are better with the Lexapro!) but what I find is that I get chilled after a hot flash, and sometimes it is disconcerting

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited February 2019

    Philly, I meant to answer your GI question but life interfered. I get GI SE's from everything. I've had GI issues anyway for years. I take an rx called Welchol which just slows everything down. But then I get constipated from Ibrance (usually). Like your Lexapro, solving one SE and causing another. It's hard to find a middle ground. Oh, well, it's all hard. Chills? Yup.

  • intolight
    intolight Member Posts: 2,379
    edited February 2019

    Tummy issues: I have been on omeprazol (Prilosec) from the beginning...it is the only thing that works for me. Yes I know you are not supposed to be on it long term, but otherwise I have chest pain from the extreme GERD. My onc watches my liver and kidneys and leaves me on it. I have tried other things but this is the only thing that works and gives me normal eating. I also have diarrhea instead of constipation. It is minimal and easily controlled with Imodium if necessary and usually not more than once a week. It is my trade-off. We are all so different and it is nice to be able to share here. I had a total hysterectomy over 30 years ago, so my hormone issues are also minimal. No chills but an occasional hotflash. Your body makes hormones in other places than your ovaries so I still take a hormone blocker. It is probably also why I take Zometa instead of the other bone meds. Seems to work for me.


  • jaycee49
    jaycee49 Member Posts: 1,264
    edited February 2019

    Chris, I took Prilosec for years for gastritis. For whatever reason, I am ok right now without it. I did notice it causing diarrhea, though, so maybe not the Ibrance? The old dilemma: what's causing what. I notice that doctors don't like it when you use the word "cause" anyway. My former MO used that idea to brush off SE's of any kind. He would say, "there's no proof that xxx drug causes that SE." Right but hundreds of patients report it.

  • jensgotthis
    jensgotthis Member Posts: 673
    edited February 2019

    Re: the GI issues, I've noticed a big improvement by giving up dairy. Popcorn seems to be a bad one for me too in terms of an urgent need to go. I usually have an upset stomach for about 4 or 5 days mid cycle that I can only describe as very acidic. It's embarrassing but I've also had a seemingly increasing number of episodes when I have to poop urgently and haven't made it to the toilet in time.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited February 2019
    thanks Jaycee for your response :) it helps to know that I am not alone! And yup - agree completely with the this can def cause that. I know for sure that at least one out of the 5 drugs I am on is causing the GI issues.


    Jensgotthis: Today I had an urgent poo too. Sucks when you don’t make it to the toilet :( I try to carry a little container of baby wipes around with me when I remember. It is so much easier on the tushie tissues which are so sensitive! I had a surprise poo in the shower a couple months ago. I was happy that I was in the shower for that one. Completely unexpected!!! Such a bummer!

    I just ate and my tummy is rumbling and making all types of weird sensations.

    Aside from yogurt, I don’t eat much dairy. I have an occasional ice cream here and there but I am not a huge dairy eater. But I know that this could be a culprit. I can’t reme the last time I’ve ate much dairy. I do a small splash of half n half in my morning coffee and that’s it.

    I have a very healthy diet - I am a practicing nutritionist - and of course it is the most difficult to treat ourselves! But I did work with an oncology nutritionist to see if I could get some good pointers and honestly I did not find out anything that I don’t already know...it is true that lactose/dairy can be really rough for people having GI issues while on chemo...

    I guess my concern for myself is that I’ve been on Ibrance for a while now and wondering if my body is taking a toll from it, maybe I need to go down from 100mg to 75mg?
  • jaycee49
    jaycee49 Member Posts: 1,264
    edited February 2019

    Jen, that situation is probably my greatest fear, SE-wise. I don't have the mobility to be "running" to the bathroom or the strength/energy to be taking multiple showers a day. And then there is my proneness to getting UTI's. The poop accident creates the perfect environment. I had a few accidents (plus the subsequent UTI) when on original chemo. Not fun. Did you ever drop down to 100 mg? If there was ever a reason to do it, what you are going through would be it for me. So sorry it is happening to you. It really effects your QOL.

    Philly, I really think all drug SE's are cumulative. Data shows that the efficacy of the lower doses of Ibrance is right there with the higher doses. Didn't someone just ask if anyone was on 75 mg? Amica? Yes, I have been on 75 mg since my first cycle caused ... yup, 125 mg caused diarrhea.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited February 2019

    I just put in a call to the MO regarding tummy issues. I’ll report back what they say :)

  • jensgotthis
    jensgotthis Member Posts: 673
    edited February 2019

    Lovefromphilly and Jaycee, I've had thoughts about the accumulation of SEs and whether the ability to stay on the drug is lessened due to SEs or if it really is based on progression in the studies. I'm on the 125 still and blood count wise, everything has been fine for me for the 28 or 29 cycles I've been on it (I'm lucky and grateful). If I'm good about the dairy and popcorn (or other high fiber foods) and especially don't combine the two of these things, then my GI distress has been much more manageable. I've been trying to give my system a bit of a rest by having just a low-sugar smoothie in the morning with protein, and a veggie soup for lunch, and then a lightish dinner. I've had an undiagnosable pain on my right lower flank and wonder whether giving my GI system little rest might help. I'm also not wanting to cook at all and was gift a Splendid Spoon subscription.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited February 2019

    yes!! I give my GI some “rests” too!

    I do the same thing!! A simple protein smoothie for breakfast and then a yummy soup for lunch and yup a lighter dinner too (which sometimes ends up being an apple and peanut butter). I just have to make sure I’m getting enough calories because I exercise quite a bit. Sometimes I worry if I am not getting the nutrients that I need. And I am getting a bit tired of the smoothies. I do switch it up to a yummy porridge type breakfast too quite often, which usually sits well.

    But I do feel like I am having a tougher time digesting fibrous Foods more than before. They go right through. I worry that my body isn’t absorbing the nutrients. May be time for me to add a multivitamin into the mix!

  • 42young
    42young Member Posts: 126
    edited February 2019

    Hi All! I just took my first Ibrance pill 10 minutes ago. When should I expect the SE's to kick in? Wonder if i can drive tomorrow at all? Thanks

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.