Ibrance (Palbociclib)

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited March 2019

    h bubblebeard! Congrats on all your positive outcomes!! How inspiring and encouraging for yourself and others!! I am sooo happy for you!! Dancing over here too!

    I DID have the low grade flu like symptoms plus headache for probably the first 9 months receiving the meds. It was almost like every other month. You receive Lupron? From my research, Lupron has what is dubbed “the Lupron headache”, very infamous with those on Lupron.

    I chalked my mini flus up to that I was healing and having a healing reaction? I don’t know what else it was. Every time I did let my MO know. Fever would hover between 100-100.5 for a couple of days and then I would feel better. Strange and mysterious! No one has an answer.


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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited March 2019

    h bubblebeard! Congrats on all your positive outcomes!! How inspiring and encouraging for yourself and others!! I am sooo happy for you!! Dancing over here too!

    I DID have the low grade flu like symptoms plus headache for probably the first 9 months receiving the meds. It was almost like every other month. You receive Lupron? From my research, Lupron has what is dubbed "the Lupron headache", very infamous with those on Lupron.

    I chalked my mini flus up to that I was healing and having a healing reaction? I don't know what else it was. Every time I did let my MO know. Fever would hover between 100-100.5 for a couple of days and then I would feel better. Strange and mysterious! No one has an answer.

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited March 2019

    Pat - I read about changing the Xgeva from monthly to quarterly after one year from Bestbirds resource. I brought this up to my MO and they were like, “oh yes that would be fine.”

    No idea WHY they didn’t bring that up to me? But so glad for Bestbirds reference guide. So I switched from monthly to quarterly without a hitch

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  • jennyunderthesun
    jennyunderthesun Member Posts: 54
    edited March 2019

    what is the bestbirds reference?

    And oof yes, 20cm sounds very uncomfortable

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  • jennyunderthesun
    jennyunderthesun Member Posts: 54
    edited March 2019

    found it! Thanks for the mention, will check it out. Any other references that have been especially helpful to you?

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  • janky
    janky Member Posts: 500
    edited March 2019

    Good morning all! I am hoping someone here can help with my questions (s) or redirect me :) I am currently taking Ibrance with letrozole and just finished cycle 11/12 last night, I am scheduled for a colonoscopy next Wednesday, 5 year regular followup, sooo here is what I am wondering. I have chronic neutropenia because of the Ibrance, should I let the endoscopy doctor know this in advance in case I should be doing a precautionary plan prior to the procedure? Or will my lowered neutrophils not really be a cause for concern? I appreciate any feedback...thank you!

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited March 2019

    hi Janky - I would let your MO and GI docs both know. This is important info and they should be in communication with one another.

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited March 2019

    Jenny - as far as I’ve been able to find, and I have done TONS of research, Bestbirds resource is the best and most uptodate resource available at this time.

    Perhaps others have good suggestions? Cure-ious is also an amazing resource as they are always reporting the latest clinical trials and research on these threads - so you may want to follow them

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  • janky
    janky Member Posts: 500
    edited March 2019

    LovefromPhilly - Thank you! I did ask my onc about it and as the appointment was long ago booked he said to go for it - now I am not sure that I am happy with that response as I have been reading (not always such a good thing ) different information that makes me second guess. Just called the Endo Doctor and gave them details...I am on vacation and my cell phone is not working super well, making communication difficult...

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  • Frisky
    Frisky Member Posts: 1,718
    edited March 2019

    Janky...just curious....why are you undergoing a colonoscopy? Wouldn't the Pet scan reveal an uptake in the colon if there was a problem in that location?

    Im asking because, many years before I was diagnosed with MBC, I was sent by my gastroenterologist to get a pet scan after he removed a small growth in my colon that turned to be benign. He explained that the pet was necessary as a follow through because it could detect problems before they would become visible during a colonoscopy.

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  • Penny-78
    Penny-78 Member Posts: 271
    edited March 2019

    Hello! Just popping in to say "hi!" I've been following everything and haven't been taking a break. But it seems like every time I start to post someone else has already said it better than I would. (Or I'm afraid I'll be quoting my own post from July and get myself confused. ;-)

    Anyway ... Pat, Joyner, Cure-ious, Philly, Candy, Sandy, Jaycee, Jaylee, Snooky, Seaway , Wandering, Jen, Ciaci, Netta ... I'm sure I forgot someone and am so sorry about that but I do love you all.

    I love you all, and am inspired and uplifted every day.

    Pat you are my light! Joyner every time I see you post my heart sings. Cure-ious the scientific progress thrills me.

    I've been so sad about DianaRose and Z (and Jaylea's struggles) but jumping for joy that there has been so much great news too.

    I'd do wonder how Leapfrog is doing -- has anyone heard a peep? And CrazeeJane -- wondering if her radiation has helped her pain?



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

    The onc's nurse told me about an hour and a half informational meeting on Ibrance at the onc's office next Monday, so I'm going. I think it will help alleviate some of my fear and nervousness. The Ibrance order has been sent to the specialty pharmacy, so just waiting for the next step.

    I know Bestbird has a free download for her comprehensive guide to mbc. I will look for the link and post it. She's recently self-published the information in book form, and it's available on Amazon for $14.95. I’m infinitely appreciative of her efforts to gather this information and make it available to us.

    https://smile.amazon.com/Insiders-Guide-Metastatic-Breast-Cancer/dp/179586060X/ref=sr_1_1?crid=1I0WA301SY980&keywords=metastatic+breast+cancer+books&qid=1553018167&s=gateway&sprefix=METastatic+br%2Caps%2C273&sr=8-

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  • JoE777
    JoE777 Member Posts: 628
    edited March 2019

    Janky, I too, wonder why any other test is necessary if you have a pet scan.
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  • Laine615
    Laine615 Member Posts: 104
    edited March 2019

    Hi everyone. New to this thread. Can anyone tell me the starting dose of Femara/letrozole?

    Thanks!

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  • janky
    janky Member Posts: 500
    edited March 2019

    Miaomix and JoE777 and everyone - I am in Canada and PET scans are not the norm :( When I was first dx stage 2 IDC I was not given scans, nor was it the protocol after unilateral mastectomy, chemo and radiation. My stage 4 was found 'accidentally' when I had pneumonia and something showed up on a scan given at that time. Since my stage 4 dx less than 1 year after the initial one, I am given a ct contrast lungs, abdomen and pelvic area, as well as a radioactie bone scan every 3 months - nothing has shown up other than the bone mets...arghhh!

    Hope 1018 - Welcome, this is a great site for support and information!

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

    Hope1018

    Letrozole dose - 2.5 mg

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  • airlinegal
    airlinegal Member Posts: 244
    edited March 2019
    Penny-78. I just pm Leapfrog.....will let you know if she gets back to me
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  • Laine615
    Laine615 Member Posts: 104
    edited March 2019

    Thank you, Pat! Appreciate it.

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  • airlinegal
    airlinegal Member Posts: 244
    edited March 2019

    Just heard from Leapfrog....she says she is taking a little break right now

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

    airlinelegal, please tell Leapfrog she is loved.

    PatGMc

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

    I’ve been taking the following supplements for at least five years:

    Vitamin D

    Calcium

    Fish Oil

    Curcumin

    What kinds of supplements, if any, do the rest of you take? Is there any reason for me to discontinue any of the above, or do you think they okay to take along with the Ibrance/Aromisin combo?


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

    DivineMrsM,

    Morning: (with food) Ibrance 100 mg, Letrozole 2.5mg, fish oil , vit C 1000mg, vit B complex-time release, D3 500 iu, and calcium 600 mg -time release.

    Evening: D3 500 iu, calcium 600 mg-time release, fish oil

    Prolia injection/6 months

    My DH makes me an elixer of lemon juice, ginger and garlic. He also makes garlic toum. He spoils me.

    My MO approved the supplements. (Edited to included dosage amounts.)

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

    Thanks, Sandi! Good to know your supplements were also approved by your MO.


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

    Because I'm always looking for a reason to eliminate a pill I discovered on the advice of my onc nurse and my doctor that Tums gives me enough calcium to keep me in the high range. Who knew?! By the way, Tums Peppermint is way better than those terrible fruit ones.

    SandiBeach, I have one of those husbands too.....50 years. I wish everyone had one. Is your elixir for nausea and does it help a lot? What is garlic toum?

    Love from PatGMc

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

    PatgMc,

    I drink the elixer hoping it will benefit my liver.

    Garlic toum is raw garlic that is emulsified with oil (grape seed or canola) and fresh lemon juice. It looks like mayonnaise. I spread it on bread or crackers. It is very addicting and it keeps people away..ha.

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  • JoE777
    JoE777 Member Posts: 628
    edited March 2019

    janky, I never had a scan until the metastasis was foundby accident and almost paralyzed. I think when I'm stable she will spread them out.

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  • pboi
    pboi Member Posts: 663
    edited March 2019

    Bubblebeard...I'm not sure if you remember me from the liver mets thread, but I too started with a large 13-14+ tumor and diagnosed around the same time as you. Gemzar/Taxol for 6 months has shrank the tumor to 9cm and I'm now stable. How large was your tumor when you made the move to Ibrance? Getting down to 3cm now is awesome news!

    After 3 years of Arimidex, it failed me which led to my liver mets. My primary onc is quite conservative and wants to stay on Gemzar/Taxol until it fails due to the still large tumor, however my second opinion onc at Stanford thinks that Ibrance/Faslodex is worth a try now. Not sure which way to go? I'm tolerating the Gemzar/Taxol fine, just not sure what move to make.

    Any opinions appreciated : )

    PB

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

    pboi, did you look into Y90 like our Grannax?

    PatGMc

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  • pboi
    pboi Member Posts: 663
    edited March 2019

    Pat...Yes, both my primary MO and second opinion MO at Stanford don't believe that is an option for me at this point. I have the one large liver lesion and few smaller ones too. But I'm not convinced and will press on and ask again!

    PB

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  • Chicagoan
    Chicagoan Member Posts: 728
    edited March 2019

    Divine, I have read mixed reports about taking Curcumin along with Ibrance. Apparently they both use the same pathway-some theorize it may make the Ibrance less effective. You may want to check with your oncologist.

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