Ibrance (Palbociclib)

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  • nonahope
    nonahope Member Posts: 695
    edited November 2017

    Cling...My group of oncologists have a specialty pharmacy. When I was on Ibrance, they took care of applying for grants to pay for the meds...otherwise, I would have had to go to Plan B...could never afford those drugs.

    Hope

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  • amarantha
    amarantha Member Posts: 457
    edited November 2017

    Lovely ladies, a virtual table is reserved for you in a charming restaurant in the heart of Nantes, which has the best cheese quiche that has ever been made on the planet. It is a gorgeous town, where people are somehow able to be exceptionally friendly and gentle. The trip took a bit too much out of me, alas, I feel "K.O" as they say in French (!), as though a truck rolled over me, but a two-hour nap here, a late morning-sleep there should take care of it, I hope. Is this also your lot ? My husband is mercifully *not* going to be whisked under the knife as I had feared, but is at home making me a surprise in the kitchen (crêpes ??); he will however, have a sonogram of the heart in January. Huge sigh of relief. Thank you profoundly for your messages of support and prayers, they helped me breathe, if that makes any sense.

    NKB I am curious that you blame the Faslodex, not the Ibrance on the nausea. Now that really does make sense, since the two shots of Faslodex all at once seemed to throw me under the bus, but I certainly did not expect that ! But I wonder why the Faslodex would do that ?

    At a rehearsal this evening for the concert of opera scenes I am participating next month, I was not myself, breathless and unable to sing as I wished, which was very disheartening, since only a month ago I sang a concert where I felt very strong - that was just a day before beginning the Ibrance. I had a short conversation with a dear friend and colleague, a lovely warm-hearted gal, sensitive, kind, giving, generous, empathetic, artistic, and a superb singer, mother, teacher ... I could see the emotion rush to her face as I told her about my health predicament, then I felt guilty. She knew about the cancer before, but not about its return, metastasis and spread, and I felt maybe I ought not to have burdened her with so much at that moment as I saw her face turn a lovely shade of pink. (Should I not have told her ?)

    Chicogoan, I am fascinated that, as you wrote :"The white blood cells usually drop dramatically in the first few weeks of the first cycle-it's not unusual." and that you notice your white cells drop after several days of vigorous activity, even if you were feeling great (!!) I am also surprised to learn there are foods that can raise the neutrophiles. To be investigated further ! Thank you so much for sharing this.

    Grannax, you mentioned a discussion about "TM" - I am supposing that is an abreviation for "markers" ? my oncologist also does not pay attention to markers, not reliable, and particularly not reliable in my case, as they have always been good when the cancer was worse -- perfectly nonsensical.

    I am sorry that some of you have to worry about how the cost of Ibrance is going to be covered. I could recommend moving to France, but that could be cumbersome, time-consuming and complicated !

    Now, I have a review of a baroque-marionnette-opera to write, and a concert to prepare, sadly beginning to realise I will have to slow down with all of this, given the current energy swamp catastrophe.

    Meanwhile, we keep breathing out and breathing in, and enjoying each new day as we can.

    Love to all


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  • jaycee49
    jaycee49 Member Posts: 1,277
    edited November 2017

    nonahope, I am positive that you could handle applying for and using a grant to assist with your co-pay. You come here and post to several threads and keep track of what's going on with everyone. The grants are really easy to deal with. People should not have to worry about paying for Ibrance. There is always a way to cover it. MO's have people who know how to help with these things. You just have to ask.

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  • Metster-Mom
    Metster-Mom Member Posts: 30
    edited November 2017

    Does anyone have any effective remedies for mouth sores? This past round (my 3rd) I've had one canker sour after another.. I've been gargling with saltwater and/or baking soda, using the magic mouthwash, straight lidocaine -- nothing is helping like they have in the past. I like to think I have a high tolerance for pain, but this last one is so painful. I realize this isn't the worst problem, but hope someone has an idea!! :)


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  • Tanya_Djamila
    Tanya_Djamila Member Posts: 1,378
    edited November 2017

    Amarantha I don't know if it's the faslodex that causes the nausea/fatigue. Both have similar side effects. I had two back to back very tiring days this week, being my third in the cycle of three. I was hoping to be able to plan my life around the energy level but it hasn't been consistent.

    Does the actual drug company have an assistance program? I remember when I first started on Ibrance in June they asked me if I had any problems with payment and told me they had a program. I didn't need it bc my husband's insurance covered it, thank God.


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  • Chicagoan
    Chicagoan Member Posts: 728
    edited November 2017

    Metster-Mom,

    Based on earlier posts in this thread I started eating Greek yoghurt every day. My mouth sores completely disappeared. I take my Ibrance in the morning after breakfast, which is when I eat my yoghurt. I don't know if that makes a difference.

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  • Nkb
    Nkb Member Posts: 1,436
    edited November 2017

    Metstermom- I also stopped toothpaste with sodium lauryl sulfate (SLS) in it and my mouth is so much better. SLS is a detergent in most toothpastes (including most Tom's types) I went to the health food store and they had at least 10 kinds without SLS- the most famous being Jason. I didn't like the taste of Jason and settled on Sensodyne Pro Namel after a sample from my dentist. Some sensodyne types have SLS-some don't. You have to read the ingredients on the BOX- it is often not written on the tube.

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  • Metster-Mom
    Metster-Mom Member Posts: 30
    edited November 2017

    Thank you! I think I read that somewhere too - is there a specific brand?

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  • Nkb
    Nkb Member Posts: 1,436
    edited December 2017

    I would get the sensodyne Pro Namel. They have it at Costco, and many pharmacies

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  • jaycee49
    jaycee49 Member Posts: 1,277
    edited December 2017

    Metster, I used Orajel pretty successfully.

    Tanya, Pfizer has a program that is for people with no drug insurance at all. They want the big bucks paid by insurance. Co-pays can be covered by foundation grants if you qualify income-wise. Most people do. I was told that if I could not locate a grant for my co-pays, Pfizer would give me the drug for free. But that means no money from insurance for them. That is why they fund the foundations. I'm not sure why they don't just take what insurance pays and cover the co-pay themselves. Must be some law against that. Like Pfizer needs help making $$$.

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  • Tanya_Djamila
    Tanya_Djamila Member Posts: 1,378
    edited December 2017

    Ibrance is so new that we're like free guinea pigs for their product. thanks for the information. I hope that everyone can get the health care and prescriptions that they need. Nobody needs that one more thing to worry about.

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited December 2017

    My MO prescribes an antiviral for me. It's works well for mouth sores, etc.

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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited December 2017

    Metster Mom: I take the antiviral, Valtrex for my mouth herpes outbreaks. They usually occur on my 3rd week on Ibrance and are located on the inside of my mouth. I take 2 gram dose as soon as I have the sensation, then repeat 12 hours later. Talk to your MO or family doctor. I also use Biotene mouthwash. Sorry you have to deal with this side effect.

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  • Nkb
    Nkb Member Posts: 1,436
    edited December 2017

    Jaycee- I heard that the drug companies “donate" money to the foundations and take the donation off their taxes and then the foundation pays for the drug.

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  • jaycee49
    jaycee49 Member Posts: 1,277
    edited December 2017

    Nkb, exactly.


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  • nonahope
    nonahope Member Posts: 695
    edited December 2017

    Janet...I'm not on Ibrance anymore. My oncology special pharmacy took care of getting me grants when I was taking it. Not a problem at all...all was paid in full. The pharmacy did everything in obtaining the grants. It was wonderful.

    Hope

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  • PatgMc
    PatgMc Member Posts: 1,315
    edited December 2017

    Hello, my sweet friends, thank you for your prayers and your encouraging words. We're celebrating here in Germantown tonight! Looks like my friend who did the PET/CT on Monday decided to accidentally-on purpose release my results to the online chart. As much as I would love for someone to declare me NEAD, I'll take this any day of the week. When I think back to September, 2016 with those bone lesions going crazy, to read these words is pretty wonderful!

    "Impression:

    1. No new or progressive site of FDG avid disease identified.
    2. Grossly stable widespread osseous bone lesions with no significant
    metabolic uptake.
    3. Persistent ill-defined soft tissue in the right internal mammary
    region with very low-grade uptake (2.2), again possibly posttreatment
    related."

    For those of you unable to stay on Ibrance, I wanted to tell you about a friend of mine who had used up all her on-the-market options. Keytruda has had such amazing results in other cancers and the manufacturer is reporting on some breast cancer results at the San Antonio conference this month. My friend's oncologist has convinced them to give her the drug! She will also get Lynparza (PARP inhibitor) which won't be approved for MBC until March, I think. I've long thought these would be the drugs for me. Maybe they're the drugs for you! It doesn't hurt to ask. (If your oncologist asks, my friend's doctor is Lee Schwartzberg at The West Clinic in Memphis, TN.)

    So that's all from me today. I have a miserable upper respiratory infection and nausea today but I might just dance in spite of that! God is good. I'm still seriously considering taking a December Ibrance break. How brave am I? We'll see.

    Happy Friday!

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  • Nkb
    Nkb Member Posts: 1,436
    edited December 2017

    PatgMC- thrilled to hear your news! Happy happy day

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited December 2017

    Pat, WOOHOO! I am joining NKB in that happy dance to celebrate your good news. Enjoy your celebration. WOOHOO!!!

    Hugs and prayers from, Lynne


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  • Iwrite
    Iwrite Member Posts: 870
    edited December 2017

    Wonderful news PatgMC!!

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  • nonahope
    nonahope Member Posts: 695
    edited December 2017

    PatG....Dance away, my friend!!! Great news!

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  • Leapfrog
    Leapfrog Member Posts: 464
    edited December 2017

    Mester-mom...I swear by Gelclair. I get two lots out of one sachet. It coats and strengthens the mucous membranes as well as healing and soothing any mouth ulcers, cold sores, (I think that's what you call canker sores - I'm Aussie) and sore gums. It's made all the difference between me eating or not eating.

    Oh PatGMc......I'm so THRILLED for you. I can't find words to describe how I feel about it. It must feel just such a huge relief!!! And you deserve it so much. Oh I wish I could fly over and hug you and whirl around with you!

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  • airlinegal
    airlinegal Member Posts: 244
    edited December 2017
    Great news PatG......
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  • amarantha
    amarantha Member Posts: 457
    edited December 2017

    Great news Pat !! Yayayayay ! Thank you also for telling us about Keytruda. I see it was in the news in France just yesterday ! Just approved for lung cancer. I'll be waiting with baited breath to see how long it takes to be approved for breast cancer. This is hopeful news for everyone !

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  • JoynerL
    JoynerL Member Posts: 1,393
    edited December 2017

    Pat.....HOORAY!!!!! Dance away, girl! We're all dancing with you!

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  • Txgatata
    Txgatata Member Posts: 60
    edited December 2017

    Awesome news, Pat! I am so happy to be able to add to the good news today. My pet/ct scan showed many lesions resolving and the rest all showed some change for the better. One went from 1.2cm to 5mm! I almost flew out of my oncs! Docs are trying to decide now if we do rads now or wait 3 more months. But honestly, I don’t care. For this day anyway, I’m going to enjoy the victory and renewed hope!


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  • JoynerL
    JoynerL Member Posts: 1,393
    edited December 2017

    So much good news! Let's all celebrate and have a wonderful December weekend! Christmas tree, here I come!

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  • jaycee49
    jaycee49 Member Posts: 1,277
    edited December 2017

    Yay, Pat. I especially like the grossly part.

    Nkb, I'd like to qualify my "exactly." The foundations only cover co-pays. Pfizer wants as much as they can possibly get from insurance. They "donate" to the "charitable" foundations and use that for tax purposes. I wonder why the insurance companies don't balk at the price of some of these drugs. But after big pharma, insurance companies are next in raking in the big bucks.

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited December 2017

    Huzzah, Pat and TxGata!!!! These are golden days, don't waste a second.

    My sister and I will take a short "Thelma & Louise" roadtrip next week, up to Santa Barbara for some Xmas shopping and foodie experiences to start off the holiday season!

    Will be checking San Antonio press carefully this year- IMHO the last two years were a bust- trials with Immunotherapy are overwhelmingly focused on TNBC, with basically next to nothing new for metastatic ER-positive cancers since Ibrance.

    WaPo has a story out this morning that immunotherapy/Opodivo cleared out the viral reservoirs and cured one HIV-infected patient- a rare response, but they put it right out there because it was a bonafide cure! These are powerful powerful drugs and we need to find the right way to present them for breast cancer, because these drugs have such a game-changer potential; CAR-T, too- we'll see next week what San Antonio has for us, beyond the one recent clinical trial with Abemaciclib and Keytruda, I haven't heard of much...

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  • Nkb
    Nkb Member Posts: 1,436
    edited December 2017

    Jaycee- the insurance companies do bargain especially the big insurance companies. They also bargain with your doctor’s fees, vaccine prices etc. The drug companies also survey doctors about what fee is the max they are able to charge before the doctor feels that the drug is too expensive to prescribe. The drug company needs to make the big bucks quickly on these new drugs before competition comes along or long term unknown side effects or other problems, or generics are allowed. They want as many doctors as possible to get comfortable with their drug, so it is the remembered one. USA pays the highest for all the new drugs. Someone inCanada said it was $6800 there.

    Cure-ious- I see that there is a half day about ILC - do you think there is anything on the horizon for that type?

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