Ibrance (Palbociclib)

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  • jaycee49
    jaycee49 Member Posts: 1,277
    edited September 2019

    Nkb, I finished it in about three days. This will be a book I give to my sister for Christmas, very high praise indeed. I agree with her views on almost everything. Of course, her perspective if very different, given her young age and young kids. But her ideas about required positivity being damaging could have come directly from my head. I kept the tissues handy but didn't really cry until her letter to her daughter's violin teacher. Brutal. I hope you enjoy the rest of the book.

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  • PatgMc
    PatgMc Member Posts: 1,315
    edited September 2019

    Jaycee, my copy came and it's my treat for next week. Thanks for the recommendation.

    Love from PatGMc

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  • Karenfizedbo15
    Karenfizedbo15 Member Posts: 717
    edited September 2019

    Thanks, for the book recommendation Jaycee. Not quite ready to read a story like this yet, but when I am this will be the one.

    Oooooh and my voucher came today from Beatson Cancer Support and Crown Plaza IHG. I thought I’d been offered 10 day passes to their leisure facilities and spa.... in fact it’s a one year unlimited membership with plenty of discounts and a parking permit ( in Glasgow that is a thing) ... woop woop, 😁👏🏻👏🏻👏🏻My friend says if I fell in the Clyde I’d come up with a Salmon.... you’d probably need to have seen the river Clyde to get that!🦈🦀

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited September 2019

    Ok ladies...I am desperate now. This Large canker sore that I have had for over a week and the fever sore on my lip, which now attached to it on the inside of lip is another canker sore there is no sign of healing. I have tried:

    Salt water rinses (which made my mouth raw and had to stop)

    Baking Soda rinses (burned to bad and made mouth raw)

    Abreva

    Ice to numb

    oragel to numb when I eat

    Biotene mouthwash and toothpaste

    NOTHING is working. The pain from these are so bad and they are not getting ANY smaller. I heard that Vitamin C and Vitamin B12 can help but its kind of an oxy moron bc Vitamin C is acidic?? However right now I need to try it so can anyone tell me how many milligrams they think I should take a day of each of these in order to help boost my immunity to heal these?

    TIA ladies :(

    Nicole

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  • PatgMc
    PatgMc Member Posts: 1,315
    edited September 2019

    Oh, Nicole, it sounds miserable and lots of us have been there. I know it sounds so simple and impossible but a few days eating the Greek yogurt might help you. I don't understand scientifically what causes the sores but it sort of makes sense that treating your gut could make a difference. It changed everything for me. (I used plain Stony Field Greek Yogurt with crushed canned pineapple. Wouldn't it be funny if the pineapple is what cured the sores?!)

    God bless you and give you relief, my friend.

    Love from PatGMc

    Some things to consider:

    https://www.amazon.com/DenTek-Canker-Cover-Patch-R...=sr_1_8?keywords=chemo%2Bmouthpiece&qid=1567377330&s=gateway&sr=8-8&th=1

    https://www.amazon.com/DENTA-COOL-Mouth-Reusable-C...=sr_1_2?keywords=chemo+mouthpiece&qid=1567377457&s=gateway&sr=8-2

    Essential oils:

    https://www.amazon.com/Goodbye-Canker-Sores-Treatm...=sr_1_16?crid=YGFYGZWF53ZN&keywords=chemo+mouth+sores+treatment&qid=1567377553&s=gateway&sprefix=chemo+mouth%2Caps%2C161&sr=8-16

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited September 2019

    Thank you pat I am ordering both the patch and the ointment. I pray it helps.

    I agree with you about the Gut issues...before I had cancer...when ever I would get a canker sore it would usually be if I had to much acidic food..ie: tomato sauce etc... I thought I have been pretty good but I guess between food choices and the Ibrance lowering the immunity ..yea its here and bad. I normally wouldn't do yogurt because I have been trying to avoid dairy...but if you think it will help I am gonna get some.

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  • PatgMc
    PatgMc Member Posts: 1,315
    edited September 2019

    Nicole, I think there's no question that Ibrance irritates the gut. Indigestion is the most consistently annoying side effect I have besides fatigue. Whenever I take two weeks off Ibrance while still doing everything else the same, I'm free of any gut problems. When I took Femara I did have heartburn but the "Leaky Gut Diet" plus Apple Cider Vinegar with the Mother fixed that.

    I guess we each must find our own way.

    Best of luck with the new ointment and the patch.

    Love from PatGMc

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited September 2019

    Nicole, please call your MO. If office is closed, call MO on call. You need to address these blisters, assuming they are viral. Maybe a decision can be made to get you on a strong antiviral asap.

    The concern is if they are not healing, you could get a secondary bacterial infection.

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited September 2019

    Sandi I emailed my MO and nurse. I last spoke to them friday. When I emailed today I asked if they could call in Valtrex...my niece said it helps for fever sores.....

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  • PatgMc
    PatgMc Member Posts: 1,315
    edited September 2019

    Nicole, I'm sure Sandibeach is right. I had to laugh as it speaks to the difference in the way I approach things. Others call the doctor and I log onto Amazon!

    Love from whacko PatGMc who could help a friend in need get plain dead

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited September 2019

    I just left a message for the on call doctor (not my MO).... it's just tough because I am starting with a new MO next week since we moved so I hope they will call in something.

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited September 2019

    Pat, My indigestion is awful as well- what I especially hate is I cannot tolerate more than a few sips of wine!! What do you do for that? I take Gaviscon tablets, which help a lot but still can't have much wine, my whine...

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  • PatgMc
    PatgMc Member Posts: 1,315
    edited September 2019

    Cure-ious, lucky for me I don't like wine. I'm sorry that pleasure has been spoiled for you. I'm not a big advocate of drugs like Prilosec as I've seen them cause their own kind of damage over time but I wonder if that kind of inhibitor could be used on the evening you're going to have a little wine.

    Pepcid AC taken before dinner helps me and Tums are my daily friends. I thought maybe the Pepcid results were all in my head but left it off for a couple of days and I was way worse. I don't know about Gaviscon but will look it up on your recommendation.

    Love from PatGMc

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited September 2019

    Hey, Pat- there are quite a few trials that require that you NOT be on Prilosec-type drugs, and it is bad for the digestion to stay on that drug for more than two weeks, so I don't take that- the Gaviscon creates a kind of "physical barrier", and not sure how that relates to Tums..

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  • PatgMc
    PatgMc Member Posts: 1,315
    edited September 2019

    Yes, Cure-ious, I'm very much against those drugs but I thought it might be a possibility for you occasionally. My sister had to have surgery on the opening from her esophagus to her stomach because of many years on those drugs at prescription strength.

    (Edited for clarity.)

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited September 2019

    Nicole, what you’re dealing with may be worth a trip to urgent care to rule out a staph infection or other viral issue. What started as a fever blister or canker sore can turn into more, especially when we’re often at medical offices and pharmacies

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited September 2019

    The on-call MO called me last night..all he called in was a mouth wash and lidocaine ....he doesn't want to call in any antivirals until he speaks to my MO...... so that didn't go well.

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited September 2019

    yep, Pat, I have the same issue your sister does, hoping it will heal or not get worse, but then comes Ibrance, oh well...

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  • gailmary
    gailmary Member Posts: 332
    edited September 2019

    I HAD issues with indigestion too, even before ibrance. Then I had to have my gallbladder out. After surgery I developed pancreatitis. I was released from hospital with terrible indigestion and was told I will probably need to be on a prilosec type drug for life. My research told me that's not good. My pharmacist said I could probably benefit from digestive enzymes. Smart guy. I haven't had an antacid except an occasional tums since I started enzymes. I dont even take those now unless I have pizza late. I would encourage trying those to anyone that isn't digesting cause it just makes sense. I would describe indigestion as a failure to digest food. Food just sits in your tummy. And a digestive enzymes by definition helps body digest food. Its a no brainer. Plus They wont hurt you like prilosec. I guess I didnt understand the antacid angle cause I never felt I had excess acid. I had no heartburn type pain. But then I'm not presently taking ibrance, so maybe. . . Good luck to all

    GAILMARY

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited September 2019

    What a great suggestion, GailMary! I have a friend who swore by papain-type enzymes for her elderly mom, who needed to gain weight. They helped her more efficiently digest the food she took in and to keep her weight from dropping to unsustainable levels, so it makes sense it could help those of us who cannot freaking seem to digest much of anything!!


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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited September 2019

    Nicole..well, at least you are on the MO's radar. Since you are in the middle of switching MOs, he or she will want to see you.

    Jensgotthis also had good suggestion of an urgent care if you can't see your MO. Do you have a family physician that can help you?

    These mouth sores are painful and it sounds like yours are getting worse. I am surprised the on call MO didn't get you in to be seen the next day, unless the office is closed.

    Keep us posted, we learn from each other.

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  • Ciaci
    Ciaci Member Posts: 304
    edited September 2019

    NicoleRod, the mouthwash with lidocaine is the Magic Mouthwash everyone here speaks so highly of... if you haven't tried it yet, you'll be pleasantly surprised. I can understand wanting to wait to prescribe the antiviral - Valtrex can destroy red blood cells. If the Magic Mouthwash helps, you can avoid another complication!

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  • PatgMc
    PatgMc Member Posts: 1,315
    edited September 2019

    Gailmary, thank you for the info on digestive enzymes. Can you tell us exactly what you take (brand and amount)?

    Thanks from PatGMc

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited September 2019

    jaycee, in The Unwinding of a Miracle, the author, Julie, writes about telling her husband she understands that after her passing, he will move on, find another woman, marry again..but,,,the new woman better never touch her daughters’ inheritance or Julie will come back to haunt her, haunt him. It blew me away reading that because it’s EXACTLY what I told my dh.


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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited September 2019

    Ciaci...well I would love to try that..but when he told me that it was at 12am..so this morning (monday) I called the pharmacy to see if they had it..they were closed because of the holiday...so now I tried leaving him another message to see if he did call it in or couldn't because they were closed. My doctor is not in she is out for the holiday so I can not speak to her directly. The emergency rooms near where I am right now have HORRIBLE reviews...the urgent cares have good reviews but are all closed...I wonder if I can be seen at urgent care for these sores...since I have cancer also?


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  • jaycee49
    jaycee49 Member Posts: 1,277
    edited September 2019

    Nicole, I hunted around last night and found something about vitamin B12 applied directly to the sore. Worth a try?

    I took 10 mg of Prilosec a day for years. The OTC dose is 20 mg. The 10 was a script. Cheaper, too, than OTC. I stopped when the pain lessened and then stopped. It can happen, even while taking Ibrance.

    Divine, do you call her "slutty second wife" like Julie? The copy I read was a library book. I really need my own copy to mark up and reread sections.

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited September 2019

    Thanks Jaycee I am definitely looking into the Vit B12 didn't know about that I could put it directly on the sore.

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  • Danbee
    Danbee Member Posts: 6
    edited September 2019

    Hi all,

    I've not posted before (I'm an introvert and a lurker! sorry all! Ha!). But I have benefited from all the information you lovely and brave ladies have so selfishly shared. Thank you.

    One thing I noticed is that when I search for a specific symptom, fatigue for example. Many people that have had fatigue chime in and give tried-and-true advice. However, not everyone not experiencing the symptom chimes in. So I end up convincing myself the majority is experiencing the symptom I searched for....selection bias, if you will. I know many women deal with these symptoms. Some experience more. Some experience less. But for anyone out there like me, the following type of record is important. So please bear with me as I list symptoms

    I just finished my first cycle at 125 mg. Well, just finished my 21 days on; I'm on my first day of my off week. I have to say that I am, overall, pleased.

    • hand tremors days 3 & 4
    • loose BMs days 14, 15, & 16
    • fatigue by mid afternoon on days 16 & 17
    • what i call "chemo rash" on one knuckle on one hand that was mild enough it didn't itch and no one else noticed it, starting on day 15
    • Noticed thinning of brows and lashes. But that may be due to anastrozole, which I've been on for 4 months now.
    • This ibrance cycle I have lifted weights, cycled, rowed, stair climbed, cleaned house, done laundry, worked, completed on online class, started another, taken a family trip, and taken a 4 day solo trip with my littles.


    Seriously, everyone has been such a help in my journey since de novo diagnosis in November of last year. Even the ladies that are no longer with us. All these words of love and support... all these records of good days and bad days... These conversations are important and valued and researched and remembered. Thank you, again to every one of you that has blazed the path ahead. I hope to be able to do my part and be as brave as all of you.

    Danbee

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited September 2019

    Ok so he called in the lidocaine mouthwash I am trying to get it filled now. Tomorrow I may have to go to urgent care though because this doesn't seem to be getting any better. I do not have fever though..so that is good.

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  • snooky1954
    snooky1954 Member Posts: 883
    edited September 2019

    Nichole, having never had a canker sore in my life, I googled it. Ouch. I am so sorry. The article said you can almost always cure it yourself with home remedies. I have not read this whole thread so you might have already tried some of these suggestions. Here's what I read

    Salt in warm water swish around in mouth, 3 times daily.

    Baking soda mouth wash, swish around in mouth 3 times daily. Or, make a paste of it and put directly on the sore.

    Hydrogen Peroxide. Dab on with a cotton swab.

    Yogurt eat daily. (YES PAT you were correct)

    Hold ice on it to stop in inflammation and make it less painful.

    The report read that they are sometimes caused by an iron or folate deficiency anemia. Or a weakened immune system. ( No surprise here cause of cancer drugs)

    The report read that they "almost always disappear on their own in 7-10 days.

    Since you've dealt with these before you might already know all of this.

    HUGS

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