Ibrance (Palbociclib)
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Great news Ciaci, Simone and Faith! I'm so happy for you!
Here are a couple of things I've learned in the four years on Ibrance. I know these are small things compared to what some of our friends here are experiencing, but these two things have been so annoying. Thought I'd share...
1. Changing pharmacies for Ibrance can be a huge pain. Here are some recommendations based on my two week attempt to get delivery set up:
- When you call the specialty pharmacy line, stay on the phone until they give you answers and REALLY have things set up. If they say they will fix an issue and call back, it may not happen.
- Be careful setting up an online account even though they ask you to do so. Any odd thing can mess it up or trigger a request to start over. If you've moved, if you have an extra space in the address...anything. When you start over the pharmacy could actually set up a second account, When you call to place your order (because they can't fill an Ibrance script online) they won't fill your prescription until their online screens are correct.
- Ask your MO to fax in the Ibrance prescription using the numbers your pharmacy has on their website and keep the note from your doctor with the date it was sent. They may say it never came in and when you tell them the date and time, miraculously they do have it in their system.
- Keep your co-pay information handy. The online system can misread the numbers you key in. When this happens, they will say you've been denied coverage (even though a foundation has told you there is no co pay required.) Ask them to check the account numbers again.
- Be persistent. Having stage IV is a full time job some days, but we can get what we need by persisting!
2. The Ibrance brain fog...it's real.
- I feel "out of it" or less sharp than I was before treatment.
- It gets worse over the weeks I take Ibrance. I'm motivated and perky on day one, but the last few days I want to nap all the time.
- Resting helps me feel less tired, but not sharper.
- Exercise helps reduce the fog, even if I only take a short walk. I'm trying to exercise regularly, but it's hard.
- One of the brain health supplements currently on the market may help. (I restarted phosphatydlserine last week and feel more alert.)
- On desperate days I'll even drink a mid afternoon coffee to wake up.
3. Does it bother anyone else when someone finds out about an acquaintance dying from cancer and they run around telling others in a whisper..."Oh...did you hear about (name). It was the C word (rolling eyes). I heard she had (point to body part affected). It was Baaaad....Lordy!" Like dying of cancer is the juiciest gossip ever. Ugh.Rant over. Hope you all have a pain free day with at least one reason to laugh out loud. Thank goodness for this forum!!
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Hi Iwrite,
I hope you don't mind if I chime in too on living well with Ibrance. I'm starting my 43rd cycle of Ibrance on Friday-never have been NEAD but grateful to be stable.
1) I concur with the importance of exercise. It can be very hard to get started again. In my case my body had been greatly weakened and damaged by cancer. But start something-in a pool perhaps for stability. I went from walking with great difficulty 3 1/2 years ago to now golfing and playing pickleball. I've done yoga throughout. I get frustrated because I can't do all the poses I used to do but I'm convinced daily yoga practice greatly alleviates aches and pains and helps to maintain strength and flexibility.
2) Drink lots of water!!!! I drink at least 72 oz per day-it helps with dry skin and even brain fog IMHO.
3) Prioritize good quality sleep-that also helps with brain fog. I typically sleep between 8-10 hours per night. I rarely have caffeine and have added a weighted blanket. Both of these help me get deep, healing sleep.
4) Keep using your brain. I stopped working but do a lot of what I used to do professionally as a volunteer. I lead retreats, write sermons, facilitate difficult meetings. Plus I have taken up crossword puzzles as a hobby. Laying around too much or doing too much passive consumption of media I think contributes to a duller brain.
5) Keep trying new things-new activities, new games, meeting new people, even trying new recipes to make life feel fresh.
Finally I heard some advice Cubs player and cancer survivor Anthony Rizzo gave to kids with cancer. It applies to us as well-"on days when you feel ok, try and live as normal a life as possible-be a normal kid." I think that helps so we are not always feeling like we have one foot in the grave.
I'm hoping we all can stay alive until that new cancer drug comes out. Maybe we will be the first generation cured of cancer!
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"I'm hoping we all can stay alive until that new cancer drug comes out. Maybe we will be the first generation cured of cancer!"
Amen Chicagoan! Amen!!!
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Ciaci, Simone and Faith I will be doing an Ibrance dance for you, good news deserves to be celebrated.
Iwrite and Chicagoan, I wholeheartedly agree - live the best life you can!
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Iwrite\Chicagoan,
Great advice. It drives me crazy too when people whisper. Another thing that drives me crazy is when people act like your making things up. I had a friend ask me if I was done with treatments now. I told her no I would be on some type of treatment until they stop working. She said hum.. really? And rolled her eyes.
Jackie,
I hope we can too.
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This came in my shipment today. Interesting. The ones I got today are capsules. The price went up 5%. $634.33. More than usual.
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Jaycee,
Interesting. If I was a betting person, I'd bet that it's cheaper for Pfizer to make the tablets than to make the capsules. But that would just be my cynical self saying that.
As for the price increase, when does Ibrance go off patent? 2021 or 2022? I can't remember. I think I remember reading about other drugs where the price went up the closer they were to going off-patent. Sort of a last gasp for the Pharma company before they can't claw so much money for their meds. Again, my cynical self comes out.
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Bev, my cynical self says that, too. I never paid attention to when it would go off patent because I never thought I would be on it that long. (oops) They were challenged in 2019 but won. New challenges are not expected until 2023.
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I just looked up when the patent expires and it is January 16, 2023.
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Jaycee,
Another thought I had is that they may be extending or filing (or have filed) for another patent for the tablet versus the capsule, and that's another way they can extend their hold on this wildly successful, widely prescribed and advertised drug. No sense in cutting off the cash cow that this is.
Such a racket, but we can't escape it. Sigh.
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I don't know patent laws but wouldn't the original patent still expire and allow for generic versions of the original formulation?
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Jaycee- Thanks for the heads up on the tablet change. I am good till Feb something for my pills. Wonder if I will receive a flyer too.
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The main Pfizer patent covering Ibrance expires on January 22, 2023, but Pfizer has applied for a patent term extension that would extend the patent term to January 6, 2028. The extension is granted to "restore" some of the patent term that was running during clinical testing and FDA approval proceedings. I would expect generics to challenge the extension and the underlying patent as soon as the 5-year regulatory exclusivity expires next month, but I wouldn't bet on any generics entering the market until 2028.
The Pfizer website says that the tablets are an improvement upon the capsules because they can be taken with and without food - so, they are a slightly better formulation. They received FDA approval for the tablets back in November 2019, presumably after demonstrating acceptable bioequivalence with the capsule formulation. The tablets won't allow them to maintain the price at the current levels once "generic capsules" enter the market, but it might allow them to maintain market share if they are priced close to the generics and are slightly superior. They also add another complicating factor on any generic looking to enter the market...
Sorry about the excessive information - my day job involves a lot of pharma patents
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Piggy, thanks for the information. I appreciate it as I know nothing about it.
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Piggy,
Thanks for the update. I'm glad that you were able to pull together this info quickly. I had done just some quick googling when I first went on the drug to see how long I'd have to pay the outrageous copays, etc. Big sigh. This is longer than I thought. So the bottom line is still the same -- the price won't be going down any time soon. As expected....
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Brilliant news Ciaci and well done Mike!
We’ll see how the Ibrance tablet thing rolls out in Scotland.
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Well if it means I don't necessarily have to pound down some breakfast to take the tablet that would be a bonus. I wonder how long manufacturing lead times are for these pills.
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Iwrite, thanks for mentioning the people who whisper about others who have cancer. One of my sisters does this seemingly on purpose and it feels like a passive-aggressive thing: “I'm pretending to shield you but am whispering so you know how horrible it."
She and her close friend (CF) will be at a family gathering and whisper in a kind of code about some vague person with cancer, like CF's neighbor's cousin who used to work at the bank:
Sis, standing close to me, whispering to CF: “What did Helen.....?"
CF, also whispering and shaking head: “Not good. Surgery......Both."
Sis, sounding concerned: “Brady and Ryan...?"
CF: “ Her mother is flying up."
Sis, wincing like she's in pain and moaning a little: “That beautiful hair...."
CF, sadly nodding her head, “Yeah, they don't know yet."
(So Helen learned she has to have surgery for breast cancer, her mother is flying in from Florida to watch Helen's boys, and even tho Helen is getting her boobs cut off, Sis and CF feel mostly bad that chemo might make her go bald.)
Sis and Cf give me the side glance, acting like they hope I didn't crack the code.
And the thing is, I'm so much tougher than they ever give me credit for! How many women have I conversed with on this forum over the years that have succumbed to breast cancer? And people in my personal life who've passed unexpectedly from different causes? Some how they don't think I realize one of these days my own number's gonna be up. Listen, Sis and CF, I hope its not any time soon, but yours will be, too!
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Following up on the whisper conversation, this should make you laugh.
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Hi team,
First time posting here but I have been reading the page for almost a year now. I was diagnosed with Stage IV last March and have been on ibrance, falsodex and xgeva. On Sunday, I started developing pain in my ear and throat and had problems eating and swallowing. Went to the ER and they did some scans found nothing in those areas not even an infection so was sent home and asked to take pain meds for the pain. However the pain in my ear and throat area has worsened and I'm not able to even speak or eat. Once I force myself to drink, I just ended up throwing up. I'll be going back to the ER today but wanted to check if anyone on here has had that and how did their physician treat them.
Thank you!
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It really seems like this would warrant a call to your oncologist. That's what I would do.
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My wife's hemoglobin levels are once again dangerously low. She took two weeks off ibrance, her neutrophils and platelets came up quite nicely, but her hemoglobin has once again fallen. It was low a month and a half ago. She got it retested after less than a week and it fell even further. They gave her a blood transfusion and it came up quite nicely.
She is now booked for an endoscopy of her trachea and colonoscopy just in case she is bleeding internally. She had an endoscopy a couple of months ago, and things looked better than ever. She had some varisces in her trachea previously, but they were banded, and never recurred.
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Fighter, I agree with Jaycee. This is unusual and warrants a call to your onc.
Husband, praying for your wife and that they can find the cause of her low counts.
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OMGosh, Jack5ie, I literally laughed out loud at that clip! Loved it!
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Husband11 -- We're hoping for the best for your wife. As a fellow husband, I know how helpless you probably feel. It sucks.
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My new MO says that Ibrance and drugs like it has revolutionized Metastatic Breast cancer treatments, since I’m so new at this, wondering if you all agree with her??
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DivineMrsM...glad I got you to laugh!
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Husband,
Sorry to hear your wife is still having issues. I hope they can figure out what is going on.
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FighterLove...so sorry you are having those issues. I seem to get occasional pain everywhere, including my ears. It usually comes and goes though and it doesn't cause vomiting. What did your MO say about it? Let us know how you make out at the ER.
Husband11...so sorry your wife is going through this again. Please keep us posted.
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SondraF - hooray for the news that your tumor shrunk. I am so oblivious to what my body should feel like and I am lumpie for other reasons, that I cannot tell if tumor has shrunk. Swelling from lymphedema is still there. Health providers always seemed a little surprised that I cannot find lumps when I look for them. I do lymphatic massage daily. Wear a sleeve and glove. Just finished cycle 4. CT scan will be in a few days. Lymphedema is opposite (contralateral) from side where nodes removed.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
Swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019. Stopped seeing lymphatic therapist early October. She did not think it would help until tumor removed/chemo'd/radiated into oblivion.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
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