Ibrance (Palbociclib)

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  • skyfly
    skyfly Member Posts: 85
    edited October 2018

    Crazeejane,

    they have a really hard time finding a good vein in my mom’s arm and she’s started asking for her hand to be used instead.

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  • PatgMc
    PatgMc Member Posts: 1,315
    edited October 2018

    Crazeejane, I'm a great fan of ports. My first chemo in 1994 was done in the top of my hand...Adriamyacin. I learned about ports in a support group after I got phlebitis from that. The oncologist blew me off when I asked for a port and I wish I had insisted. When I did chemo in 2012 the doctor I had (and still have) didn't think twice about having a port inserted. I've never been sorry! It's outpatient surgery covered by insurance...in and out in an hour, a little soreness for a few days and your life has been simplified forever! Accessing it is no more painful than a pin prick. Go get one and come back here so we can celebrate!!

    Love from PatGMc

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  • Seaway
    Seaway Member Posts: 159
    edited October 2018

    Just got my ct scan results from yesterday and I'm so disappointed. What now I wonder? Just started my 7th cycle.

    LUNGS: Multiple new small pulmonary nodules throughout the lungs measuring less

    than 4 mm, some annotated on series 4.

    IMPRESSION: Interval appearance of multiple small nodules measuring less than

    4 mm. They require imaging surveillance to assess for growth and the

    possibility of new metastases.

    Cathy

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  • Jaylea
    Jaylea Member Posts: 478
    edited October 2018

    Oh, Cathy, that just plain sucks. Still, less than 4mm is teeny tiny, and it sounds like you need more surveillance to determine whether its progression or something else. Which of course is the crazy-making part of this journey. So we will sit and wait with you, dear friend, as you talk to your MO about the next step. If it is progression, then it just means that Ibrance wasn't your drug, so the next one needs to step up.

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  • Hobbes12
    Hobbes12 Member Posts: 88
    edited October 2018

    Cathy. That sucks. It’s such a bitch of a disease.


    Hobbes

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited October 2018

    Cathy ugh!! disappointing and completely vague news. As Jaylea said, we will all will sit with you and wait with you and please feel free to vent as needed.

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  • PatgMc
    PatgMc Member Posts: 1,315
    edited October 2018

    Cathy, I will double up on my prayers. We have all seen these things turn around and there's no reason yours won't so we will just expect better days ahead. Maybe these aren't metastasis at all?

    Love from PatGMC

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  • Hobbes12
    Hobbes12 Member Posts: 88
    edited October 2018

    is any one on the trial of fulstrevent and alpelisib ? I am being screened for the presence of the PI3K gene but the process seems very slow and bureaucratic. The trial trials coordination in Vancouver chats her stories daily.Hobbes

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  • Seaway
    Seaway Member Posts: 159
    edited October 2018

    Ladies;

    Thank you so much for your kind words, encouragement and support. I'm trying to be calm in the midst of this shitstorm and it really helps to know I have you all there for me. I wonder if it is possible that they are not mets. It seems so unlikely but perhaps.... Even my regular doctor called with support and suggested I quicken my appointment with my MO. Oh dear. I was really hoping this would work for me.

    Cathy

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  • IntoLight
    IntoLight Member Posts: 1,701
    edited October 2018

    Hobbes, I was screened for P13K but don't qualify.

    Cathy, I will add my diligent watch to the others. Hopefully it is nothing to stress about. My last scan showed a slight change also so I am on the watch right along with you...

    Just returned from Portland, and the flight was the easy part of my return! When I got home, already exhausted, the elevator to our condo wasn't working (I live on the 4th floor) and I don't have enough stamina to carry my bags up 4 flights. I used the other side of the building but still had to walk up 2 flights as the buildings don't match. Then, I took my DGD to a Halloween party at her school planning on using the other side to return, but that elevator went down also. So tonight I walked up 5 flights of stairs (one extra one from the garage.) It took me a good 15 minutes up and another 30 minutes to recover. Some days are just difficult!

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  • Crazeejane
    Crazeejane Member Posts: 51
    edited October 2018

    Elenas401- Thanks for the heads up about the port. I wasn't sure if they would put one in since I haven't needed IV Chemo and have only been taking oral meds. However, since I have become somewhat of a human pin cushion for each blood draw I think I will ask because it's not like the blood draws are going to end any time soon.

    PatMgc- Thank you too for the kind response....I am definitely going to look into it at my appointment. You are the best.

    To anyone else that responded as well...thank you all so much!! I love this group and the fact that I can talk to you all and you are all so kind and compassionate and helpful. And I love reading about all of your lives and special and not so special moments.

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited October 2018

    Oh, Seaway, what a disappointment! They do sound teeny-tiny, and I'm in the camp praying that they're not progression at all. Hang in there, girl...we're with you.

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  • Tanya_Djamila
    Tanya_Djamila Member Posts: 1,378
    edited October 2018

    Good morning

    I’ve been reading for days

    The pics are gorgeous and a testimony as to how we still strive to live our lives and keep things as normal as possible.

    http://aboutislam.net/muslim-issues/america/black-muslim-breast-cancer-survivor-walks-17-years-cure/

    I shared a link above an article about MBC and the walls I’ve been attending over the years.

    Have a good day all you’ve been a blessing for me.

    Tanya

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  • MuddlingThrough
    MuddlingThrough Member Posts: 726
    edited October 2018

    Hobbes12, I follow this thread about the trial.

    https://community.breastcancer.org/forum/8/topics/865451

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  • airlinegal
    airlinegal Member Posts: 244
    edited October 2018
    Cathy....stay strong....thinking of you

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  • airlinegal
    airlinegal Member Posts: 244
    edited October 2018
    Does anyone know about matcha tea and are we allowed to drink green tea when taking Ibrance? I just watched a show with Dr Oz and how they are fining Matcha tea helps with breast cancer.
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  • LaurenH
    LaurenH Member Posts: 389
    edited October 2018

    seaway/Cathy - I am sending you great big hugs while we all wait with you to find out more about how these MIGHT not be new Mets. We all know how scary this must be nonetheless. I am thinking of you and hoping fo the best.

    Love to all, Lauren

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  • snooky1954
    snooky1954 Member Posts: 883
    edited October 2018

    airlingual     Yes, there is tons of research on green tea, and esp. matcha green tea and the fight against cancer. My understanding is that the tea stops cancer stem cells from reproducing.  For 6 mos I drank the tea daily, which was hard to do unsweetened. I now take Green tea extract ordered from Amazon.  My onc has approved its use with Ibrance. I take a looooong list of supplements.  You can go to PubMed and pull up numerous studies which have been done.  Sue



     

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  • grrifff
    grrifff Member Posts: 104
    edited October 2018

    Saw my oncologist yesterday, blood work was great so I was able to start Ibrance today. He wanted to wait 6 weeks before starting it because my WBC were low from A/C chemo. Last chemo was 9/14. PET scan on 9/28 was great. Tumor marker on 9/28 was 182. He agrees that for me the tm is accurate since imaging doesn’t show the whole picture. Anyway, at yesterday’s visit it was 632!!! How can it go from 182 to 632 in 4 weeks? Has anyone had this happen? I am on Faslodex. I’ve had the first three doses now I will have it monthly. He believes that the 632 reflects the aggressiveness of the cancer not the quantity of cancer in my body. Not sure what to think, it’s so upsetting to think you’re doing well then BAM! this happens. Any thoughts?

    Jill

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  • Seaway
    Seaway Member Posts: 159
    edited October 2018

    Jill; I sure get you with the BAM! My oncologist uses the CA125 with me as I've had ovarian cancer as well. I asked him about breast cancer tumour markers and he doesn't use them at all and said they're totally unreliable.

    Thank you so much ladies on your kind thoughts and well wishes. I am totally unsettled by the scans but my MO is seeing me this Thursday afternoon so I should have more information. I will be calling the Octane program to see about my genetic information as it wasn't available last month. My DD and BFF who go with in to appointments (usually one at a time lol) are both planning on coming this time and tell me that he's said there are many other treatments. I can't remember.....funny how that is. I was just thinking that after months of low (but not too low) blood counts I started taking B12 and folic acid and was so happy when my counts were very good and almost in the normal range a few weeks ago. Now I'm thinking that that should have told me the Ibrance wasn't working. Not because of the B12 and Folic acid but because suddenly my blood improved so much. Hmmmm

    Good luck to everyone on treatment and having scans. I'm thinking of you all. Bless you

    Cathy

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  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited October 2018

    Lauren love the pic. My son and grandson wear Pink also and GS has gotten him team to wear pink also. Love the awareness of young boys and men toward this nasty disease.

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  • IntoLight
    IntoLight Member Posts: 1,701
    edited October 2018

    Lauren, I love the pink also. Great way to get kids to broaden their view of the world.

    I spent 8 hours at the ER yesterday (first ER visit since starting IL in 2 1/2 years!) I have pneumonia and also kidney pain. He ruled everything else out (CT scan, X-ray, multiple labs, etc.) So don't know what the pain is all about but he sent me home with 2 antibiotics and said to call my onc. She took me off Ibrance for a week or 2--my first time for a break also in 2 1/2 years. I see her in 2 weeks anyway. Still feel bad today so my DD had to take my DH in for his colonscopy. Anyone else have strange flank pain? My DD thinks is from all of the extra stairs I have had to climb lately. Doesn't feel like it, but can't find any other reason.

    The good news is I have lots of people coming in for Thanksgiving. Can't wait already!

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  • airlinegal
    airlinegal Member Posts: 244
    edited October 2018
    IntoLight....hope you feel better soon
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  • LaurenH
    LaurenH Member Posts: 389
    edited October 2018

    Oh no, IntoLight! I hope the source of that pain is easily addressed and nothing sinister. Sounds like they tested thoroughly though so hopefully it will resolve and before you know it, your visitors will be here for Thanksgiving! Feel better soon

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  • time-for-a-cure
    time-for-a-cure Member Posts: 71
    edited October 2018

    into light- I have had a similar experience on 3 occasions now. Most recently about 3 weeks ago. Was at a wedding, feeling fine, than BAM abdominal pain, vomiting, diaphoretic. Took a trip to the ER, they usual work up which showed nothing. A litter of fluids witch helped. Saw my onc the next day - abdominal and chest Ct. Pneumonia and inflammation in my colon. Another round of fluids and took 2+ weeks to recover. This is the third episode where i go from feeling great, then 5 mins later, fever etc sets in. Weird. Wishing you a speedy recovery! Kitty

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  • PatgMc
    PatgMc Member Posts: 1,315
    edited October 2018

    Intolight, I'm praying for you right now.

    Love from PatGMc

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  • holmes13
    holmes13 Member Posts: 214
    edited October 2018

    intothelight- i hope you feel better soon! i have had severe pain twice since diagnosis in my left side and they can never figure out why. they give me pain medicine and then it goes away and doesn’t come back for months. it’s strange. are you cooking thanksgiving for your company this year

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited October 2018

    IntoLight, I've had pain in the lower part of my ribs on the right since MBC diagnosis in Feb 2016. It is sometimes worse and sometimes seems to go away. I am clueless, but of course, it is worrisome. I've even wondered about plain old heartburn. In any case, we're all thinking about you. Keep us posted.

    Are you cooking for Thanksgiving?? I LOVE Thanksgiving. Makes me want to start baking and to send you a triple chocolate pound cake, which is my new best recipe of all times. Deadly good.

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  • nonahope
    nonahope Member Posts: 695
    edited October 2018

    IntoLight....Sending healing vibes and prayers your way. My back gets very achy if I've gone up and down steps. Steps are difficult for me due to my neuropathy.

    Hope

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited October 2018

    Joyner, Can we get that recipe? I need a new dessert for Thx..

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