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Ibrance (Palbociclib)

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Comments

  • Leapfrog
    Leapfrog Member Posts: 406
    edited September 2017
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    Nonahope yes I'm on Denosumab injections monthly for bone strengthening. I was also told it has cancer fighting properties and is a most important part of my treatment.

    Cure-ious and mods, I agree that this thread, being so active, and with newbies needing support and questions answered, it would be a great idea to make a note of it at the top of the thread.

    Those of us on this combo have a lot to offer.

  • intolight
    intolight Member Posts: 2,234
    edited September 2017
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    Nonahope, I also get a Zometa infusion every 3 months. My side effects from it are minimal--just a little achy. It helps to take a Claritan and drink tons of water before and after. I am not worrying about the "next" treatment until this one stops working. By then, who knows what will be available!

  • jensgotthis
    jensgotthis Member Posts: 671
    edited September 2017
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    Cure-opus, just wanted to say thanks for sharing your research with us!

    Mods, I agree with the suggestion to the intro paragraph. It could easily be read that this thread is not active anymore.

  • nonahope
    nonahope Member Posts: 695
    edited September 2017
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    Wishing all a Happy Labor Day!

    Nkb....I, too, am one who doesn't always read reports. I am given my lab results at the time of my draws, but other testing that comes via e-mail on My Chart, I often dismiss.

    Leapfrog...I'm hoping I will be given some kind of bone strengthening drug if I can't get back on Zometa. I know this is really important with this combination of treatment.

    Intolight....Maybe, I can get back on Zometa on a 3 month basis. Yes, I had a bit of achiness with my first infusion, but nothing to complain about. They did tell me that I would probably have some pain for a couple of days. That's exactly how long my achiness lasted. Like you, I just want to get through this treatment and who knows what will be the next step should this fail. I'm focusing on today and praying a lot! I know there will be a lot of choices out there as time goes by. I do read a lot of promising treatments on the way via Cure Magazine.

    I started Round 3 of Ibrance/letrozole yesterday. I always get a little feeling of "ugh" with the beginning of each round.

    I hope everyone has a fun day planned to celebrate the holiday. I will be going to my daughter's for a family cookout. There will be close to 25 people...it might be more hectic than fun...LOL

  • booboo1
    booboo1 Member Posts: 1,196
    edited September 2017
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    Dear iBrance Users,

    Has anyone else failed with Femara and iBrance? I am hoping to hear what others have tried as a second or third treatment option that works

    Thank you.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited September 2017
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    Boo- I was on Ibrance and Faslodex and it worked great for three months then stopped. Was so disappointed ! Back on A/C for a total of 6 rounds with two to go. Not sure what the plan is yet. Maybe Xeloda. Just wish they knew why some have been on it for years and still working while others fail quicker

  • JoynerL
    JoynerL Member Posts: 1,392
    edited September 2017
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    This is just ODD. I have had yet another "puff of smoke" event after taking my Ibrance. It had been no more than a couple of minutes after taking the capsule with water. I had slipped quietly into another room to take the capsule and returned to the table where I was having lunch with others. and was chatting. Suddenly I noticed what I thought was smoke or steam near/in front of me, but no one was smoking. I almost immediately realized (this all occurred within 2 seconds of the cloud of "smoke") that it had to be the Ibrance capsule! I jumped up without saying anything and gulped down two glasses of water. I have had this happen twice with Ibrance and never in my life with any other medication. I don't understand why this would happen with this particular capsule. And I don't expect anyone else to know, either. Just weird.

  • lisbet54
    lisbet54 Member Posts: 53
    edited September 2017
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    I'm afraid that Ibrance/Faslodex have failed me.
    I just started this combo beg. July - 2 cycles of Ibrance and 4 shots of Faslodex until now

    However I'm terrible afraid that my liver mets are progressing.
    I have had intense liver pains for the whole period. For the last 1½ month I also have had intense pain in the right side. The onc. nurse didn't think it was serious enough to see the onc - so she got me a prescription of meds for stomach ulcers. She was certain the pain was due to irritated mucous membranes in stomach/duodenum because either Faslodex og Ibrance.
    Of course I don't know for certain, but I'm afraid that the pains are due to enlarged liver and spleen and that it means that the mets are progressing and maybe spreading.

    After the first terrible month with many SE, I now don't really have many SE of the combo - and was thinking: "I can do this!".
    Now I'm afraid that if there's progression I will be transferred to something much more scary.

    I know that many have mentioned that Ibrance will need sometimes 5-6 cycles to work.

    However, Ibrance was just been approved in March 2017 in DK - and a nurse told me that they really don't have any experience with it yet as only 4 others besides me are on the it, so I'm not sure that I can convince the onc. to go on with this combo if there's progression. I'm having a CT-scan mid September.

    Anyone got any suggestions?
    What may the next line be?



  • zarovka
    zarovka Member Posts: 2,959
    edited September 2017
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    That is weird. Some kind of reaction in your stomach? There are various tricks to exhale smoke without smoking. Here's one. Use Your Fist to Do the Trick

    The process is quite simple. Here are the steps to follow:

    • Start by putting your fist close to your mouth. Make sure to keep your thumb inside your mouth with your fist at the side of it.
    • Simply puff your cheeks out hard without hurting yourself. This will help squeeze the air into the spit inside your mouth.
    • Slowly take out fist away and leave your mouth opened without breathing out. If you breathe, the fog will move down to your lungs and nothing will happen.

    I don't think this is what is going on, but it may give you some ideas ... One thing I noted is that they all involve not breathing and basically letting fog leave your mouth. Since I am guessing that you did not stop breathing, this must be coming from a reaction in your stomach. But that nets zero in a google search. I dunno. Weird.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited September 2017
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    Lisbet, I know that you're frightened and worried. I am not one of the more knowledgeable people on this string, and I'm sure that they will weigh in with sage and candid advice. However, it seems to me that you need a lot more information before a decision is made, either about your prognosis or about your treatment. Good luck!

  • AnimalCrackers
    AnimalCrackers Member Posts: 542
    edited September 2017
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    Hi JoynerL - I have read reports of the puff of smoke from a couple of other members on this thread. I'm on my iPhone in a cab right now so it is hard for me to search for them right now. It is not common but it has been reported. I may be wrong but I think Deanna may have been one who reported it. Don't freak out.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited September 2017
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    Thanks, Animal Crackers. Not freaking out...but just odd! I did blow my nose quickly, as I don't know that the contents are good for skin contact (Pfizer tells you to wash you hands before and AFTER handling that capsule!). I'm not worried, though I'm not crazy about losing any effects of a $500 pill, for sure.

    Thanks, Z, for your suggestion, too. I don't have problems with indigestion or anything like that. I think that I'll report it to my onc, as I do have an enlarged precarinal node which is generally near the esophagus (or at least that's where it appears to be on the scan). He had said that it wasn't large enough to be pressing on anything, but it's probably worth the question.

    Thanks to you both. And yes, at least one other person has experienced the "puff of smoke" effect. Unsettling.


  • JoynerL
    JoynerL Member Posts: 1,392
    edited September 2017
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    One last thing: the last time this happened, I was in the process of a little unexpected burp, and out puffed the powder. Perhaps I did this time as well and wasn't aware of it. Otherwise, I can't imagine the source of the air flow to push the powder out in a cloud.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited September 2017
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    Maybe the capsule wasn't tightly together before you swallowed it.

  • Lindalou
    Lindalou Member Posts: 598
    edited September 2017
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    Joyner....I had to laugh when I read your post! I call it dragon smoke and yes that has happened to me and also a friend of mine. Both of ours was orange. The powder if you will is indeed the Ibrance, and before it fully dissolves some can escape in a burp. Not so funny when it happens, but you are not alone in the dragon puff group!

    Question: I came down with a nasty cold and I'm finishing my last week of cycle 6. A low temp from 99.6 to 100. Thinking of not taking my last 6 pills to let my counts rise. Anyone else stop taking it for a short time when ill?

    Edit to add, I just called Pfizer and yes they are getting reports of the 'smoke' post marketing.

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited September 2017
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    I have to say that having dragon smoke come out of your mouths makes you soundquite fierce! It's good to hear that Pfizer confirmed that it has been reported by others.

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited September 2017
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    Lindalou, I hope you feel better soon. I cannot give you advice about whether or not you should stop taking the rest of this cycle of Ibrance. Whether you continue or not, please be sure to call your MO if your temp reaches 100.5. That is my MO's threshold. Your counts could continue to drop for a few days after you stop taking the medication, and infections can progress quickly. Best to play it safe.

    Hugs, Lynne


  • JoynerL
    JoynerL Member Posts: 1,392
    edited September 2017
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    Dianarose, it's so encouraging to see you post a nice, normal reply without a backdrop of pain and fear. I'm so glad to see that you are doing better!

    50'sgirl, all I need is some flames coming out of my ears and I'd be good to go!

  • Dianarose
    Dianarose Member Posts: 1,951
    edited September 2017
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    Joy- although I'm not on Ibrance anymore you ladies are still important to me and I love that so many are doing well.

    Thought I was done with A/C but MO wants two more weeks then I don't know what.

    Getting my new wig on Wednesday so maybe that will cheer me up.

    What's normal lol

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited September 2017
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    Lindalou, My MO had me take a full cycle off for a UTI I had a few months ago. Now I have a bacterial vaginal infection but dx at mid cycle. He told me to finish the cycle I was on. He is slightly OCD so it may be just him being compulsive. Anyway, that's how my MO handled infections. Hope this is useful.

  • Leapfrog
    Leapfrog Member Posts: 406
    edited September 2017
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    Lindalou sorry you're not well. I suggest you call your onc or onc nurse before deciding not to take the last six pills, though. It's a big call to make unilaterally. You've probably been told the same thing I have except I'm in Australia and we talk in centigrade, not fahrenheit. I've been told that if I have a fever of 38 degrees, which I think is about 100.5 in fahrenheit, to go straight to hospital.

    Lisbet, a few things. I also understand how frightened you feel but 2 cycles of Ibrance is not enough to judge whether it's working or not. I'm in Australia, as I keep saying ad nauseum! and it was only approved here in May unless you're on a trial, which I am. I had a CT and bone scan after four cycles and my very extensive bone mets are still exactly as they were before I started but my onc is not concerned, or so he said to me. My tumour marker is raised but still he says we will only worry if it keeps going up and stays up so I'm being guided by that and not worrying. I really believe that it's far too early for your oncologist to be thinking about the next line of treatment and I doubt that he/she will be. Hold your nerve, my love, and try not to be afraid. If I may make a suggestion, though, about your pain which you're afraid is from your liver, I don't think it's right that the nurse has decided on a diagnosis without you seeing the onc. I would be jumping up and down if I were told that, given the pain you have, and insisting on seeing the onc and asking for a CT. I hope this makes you feel a little more confident.

    Addressing Lisbet's and others' remarks, does everyone take Ibrance with food? I do and, since the first three months, when I vomited after food quite a bit, it has settled down and I don't have any digestive type SEs. The vomiting could have been caused by the Endocodine I was taking at the time though....horrible stuff!

  • Scwilly
    Scwilly Member Posts: 232
    edited September 2017
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    Lisbet: I initially had severe side pain when I was dx with mets in Oct 2016, then these calmed down. On my second or third cycle with ibrance the pains came back and I was scared it as failing, however my next scan showed shrinkage so I put the pain down to the cancers cells being zapped. I also heard from others on this thread they had pains too. So I would not automatically think this TX has failed you, and I am wishing you great scans in September.

  • nkb
    nkb Member Posts: 1,561
    edited September 2017
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    Leapfrog-I take the Ibrance with food- It is supposed to be absorbed better. In the Pfizer literature it has listed that more is absorbed with a higher fat meal also. Although as Husband11 remarked awhile back-be consistent with what you eat before you take it so your absorption is consistent.

    Seems like lots of people are having scans this week including me-good luck everyone.

  • Leapfrog
    Leapfrog Member Posts: 406
    edited September 2017
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    Nkb oh good, so I'll continue to have some chocolate after lunch! Which is when I take my Ibrance and Femara.

    Scwilly you raise a good point about pain possibly being caused by tumours shrinking. As it happens, my husband is a doctor. I'm always reluctant to reveal this as I don't want to be seen as a know-all doctor's wife (which happens) but he has told me that tumour shrinkage does cause pain.

    I'm having a MRI on my spine on Friday. Fingers are crossed that it reveals the cause of my T7, T8 pain is nerve damage...not that that is good news because it could mean a future operation, but it's better than being told the tumour itself is causing the problem.

    Good luck Nkb and others having scans, too Heart

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited September 2017
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    Had my scan last week and happy to report that all is stable. Bring on cycle 29!!!

  • nonahope
    nonahope Member Posts: 695
    edited September 2017
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    Good morning...

    I always take my Ibrance with my meal at dinner. I don't take the Letrozole at the same time. I take it at lunchtime. I had lots of nausea and gagging (no vomiting) when I first started this combo, but haven't had any issues for quite some time.

    I love hearing that pain may be a signal of tumor shrinkage. I have pain in my sides, too. I'm always thinking it's probably liver mets, though I've only been told I have bone mets - spine/rib area.

    Lynwwood....So happy your scan showed stability.

    Sending prayers and good vibes for all those having upcoming scans. I think my first one will be in October, after I finish my 3rd round.

    Off later to have my postassium level checked.

    Wishing all a very good day!

    Hope

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited September 2017
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    Lynwood, WOOHOO! Congratulations for stability. That is good news. I am doing the happy dance for you.

    I will be thinking of all of you who are having scans this week. I hope you all have good news to share when you get your results.

    Lindalou, How are you feeling today?

    Hugs and prayers to all, Lynne


  • airlinegal
    airlinegal Member Posts: 244
    edited September 2017
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    Hope everyone had a great Labor Day. I have a question...I lost quite a lot of my hair and now it is coming back pretty fast....nails were not so good either, but getting stronger. I hope this doesn't mean the Ibrance is weakening. I guess I am just nervous about it. As of last Pet things were looking ok and blood work showing tumors still going down. Started Ibrance/Femara May 1st 2016.
  • lisbet54
    lisbet54 Member Posts: 53
    edited September 2017
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    Thank you Leapfrog and Scwilly for your input. I appreciate that.

    Leapfrog, I have taken Ibrance in the evening with a late dinner. It has worked fine for me. No vomiting. Maybe the kinds of food you eat have an impact? I mostly eat raw vegetable salads for dinner.

    I'm sorry I made a mistake in my original my message which may have caused misunderstandings. I do have continuing liverpains (the onc told me that the liver pains were normal and possibly due to an enlarged liver). On reading in the thread I have learned they might also be due to either progression or shrinking/dying of mets (of course I hope for the last).

    But besides I also have quite intense pains in the LEFT side.
    A nurse didn't consider those pains serious enough for seeing the onc. right away as I already had an appointment within 4 weeks and an upcoming scan in 6 weeks. She got me a prescription for stomach ulcers (which she said wouldn't hurt me if the pains turned out not to be ulcers) - and it was worth trying.
    However this med haven't taken away the pains and when having the latest Faslodex shot, another nurse told me that these pains couldn't be ulcers because of their location (spleen/pancreas area) - left side just below the ribcase. Sometimes the pains are also in my back with rays to my left shoulder.

    If it's something serious I suppose it will turn up in the upcoming scan that I'm having later this month. I'm just so scared as I was just getting used to Ibrance not being so worse after the first month - and the possibility of being transferred to another med. I'm also scared that I'll be scheduled for an endoscopy or gastroscopy.
    It's now on the end of my week off Ibrance - the liver pains are almost gone, but the pains in my left side/back/shoulder continues with the same strength.

    If anyone has a suggestion for what these pains might be - or have had similar pains on Ibrance/Faslodex, please kick. My own fear is that they are caused by an enlarged spleen due to progression.

  • bigbhome
    bigbhome Member Posts: 721
    edited September 2017
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    Lynnwood, Happy, Happy news! So glad for your good scan! You made my day!

    I am thinking of everyone who has scans this week, try really hard to keep your minds busy with something else.

    Lisbet, I complained about left side pain also. Mo reviewed my pet scan with Dh and myself and showed me that I was full of feces. I have constipation issues and it backed up so bad it was causing me lots of pain. I thought I was going well. Try not to fret, but definitely keep bringing it up to Mo.

    Hugs and prayers everyone

    Claudia

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