Ibrance (Palbociclib)
Comments
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For those of you who asked what treatment I am on now, I was offered the choice of Xeloda or Tamoxifen. Since I was stage IV de novo, I had never been treated with tamoxifen. I decided to put off chemo as long as possible, and I am taking Tamoxifen. It seems like a step down after a new drug like Ibrance, but worth a try.
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PatgMc You had some good results and I am hopeful for the same. Just finished day 2 Ibrance. Some diarrhea, but nothing major. My buttocks is still sore from the Faslodex yesterday.
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Ooh, interesting call, 50sgir, excellent ideal!!! I hope it works wonders!!! But why can't they add Ibrance onto the Tamoxifen? That could be even good-er!
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Hi! I have a new supplier of Ibrance (now Walgreens Alliance Rx, was CVS Specialty Pharmacy before I changed to Medicaid).
Question:
Alliance ships the Ibrance in a GIANT box, wrapped inside a silver cold bag, wrapped inside that in bubble wrap, wrapped inside that in more bubble wrap with an ice pack, inside that lovely biohazard/Chemotherapy zip lock bag - and it’s all overnight Fedexed.
Should I be keeping my Ibrance in the fridge? With all that fuss and waste, it is freaking me out! CVS specialty pharmacy would deliver the Ibrance simply in the biohazard ziplock bag inside a brown paper bag - not all this fuss.
Any thoughts on need to refrigerate? I’m on cycle 15 and never have before... 🤔0 -
Got my pills today and two shirts that I ordered off the internet (two separate packages). Each package looked the same except for the size (and obviously the contents). Hope this helps. Never heard anything about keeping the pills in the refrigerator (pretty hot here today). You might contact Pfizer. Would be interested to hear what they have to say. I'm starting on cycle 4 next week. Just had cataract surgery this past week. Now that I can see, I'm excited about living longer. So far I've had virtually no SE's from the Ibrance. My tumor markers have slowly gone up but I'm interested in seeing how I do when I get labs done next Wednesday. We have some exciting things to do this summer - Alaska Cruise next month and friends visiting from Houston so I need to keep well and active. Love this blog - thanks and blessings to all.
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LovefromPhilly, I've not heard of anyone getting Ibrance packaged this way. Maybe we're living proof that WARM Ibrance is the way to go! I wonder how much Walgreens Alliance is charging Pfizer for that deluxe packaging!
Love from PatG
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Joyner & Penny--Congrats on all the good news.
Jaylea--Congrats on your anniversary! Hope you have a great time!
Welcome to newcomers!
Debbie
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LoveFromPhilly--My Ibrance does not come like that. It's just in the plastic bag marked Chemo and that's in a shipping envelope. Mine comes from Express Scripts/Accredo. Have never refrigerated it. There's nothing in any of the instructions or literature that says that. Interesting that your's came that way.
Debbie
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I just received my Verzenio last week from CVS Specialty Pharmacy. They asked if I wanted it shipped directly to me or to a local CVS pharmacy, which prompted me to ask about the HEAT (I’m in TX). They told me they pack the drug with a cool-pack when shipping to warmer cities
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Good morning, all! It's 5 AM in VA and RAINING....hooray!! My garden has keeled over in the dirt...hoping it will revive this weekend.
At the decided risk of hogging air-time/using too much band-width (and I know that I have been guilty), several things....
Chemokaze, I LOVE your user name. So clever! I have forgotten the difference in function between Verzenio and Ibrance, though I know that the former is one of the newer miracle drugs. Can't wait to hear about your experience. Good luck with it.
50s Girl, it is exciting that you can go onto Tamoxifen. I was on that for years with great success and few, if any, SE before an earlier [misguided] onc took me off and switched me onto Evista. Some years thereafter, MBC reared its ugly head. Good luck with it. And stick with us!
Dsodasso, I hear you about the sore fanny. Did you try the Claritin (or loratadine) routine?
And last, for the newbies (the rest of you should quit reading now):
Some of us have experienced what has been described as a "puff of smoke" some minutes after taking our Ibrance capsule. It happened to me three times early on, and it was disconcerting to say the very least. Essentially, maybe 5-10 min after taking the capsule, I had a puff of what appeared to be white "smoke" waft out of my mouth and nose. I am not and have never been a smoker. At first I thought, "Where on earth did that smoke come from??", and then I realized it came from ME. This capsule must dissolve readily, and the powder becomes loose quickly and at risk of escape. My onc and onc nurse had never heard of such a thing, but some others on the site had experienced it [that is true, by the way, of many things among us....one of the great values of this site].
I have a procedure now, and I've never had another puffing incident: I fill a glass with water, take a first swallow to wet my throat, swallow the capsule, and then drink the whole glass down in big swallows (to be sure it is pushed all the way down). The critical element: a little lady-like BURP immediately after finishing the glass of water, to get any air out. I believe that the lingering air swallowed with the water is the culprit, such that if you burp later, once the capsule is dissolving, you risk puffing the powder out.
[My punctuation may tell you that I am a serious morning person. So many exclamation points may have exhausted some for the day already].
Hugs...
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LovefromPhilly, I started Ibrance in March and it just came in a plastic mailing bag. The last three shipments have come with the insulated cool packs with a little card that says it's just a precaution during the hot months. The actual bottle of capsules is fine at room temperature.
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Hi 50sgirl. I had inquired what you were now on, but read your bio and deleted by question.
I was on Tamoxifen for 5 years and did fine. You will, too! Sometimes, I wish I stayed on it, but the criteria at that time was no more than 5 years.
Keep us posted. What will be your primary posting site?
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My husband and I used to own a pharmacy, and I can tell you that, depending on the supplier, if the forecast temperature is over a certain number (and that threshold varies with the supplier, not the shipper), everything came shipped in cold packs. It's to protect it from the heat if it sits on the truck all day. Until it reaches you, they're responsible for it, and they're not going to take a chance on that $11,000 drug melting! Once you get it, just take it out of the protective wrappings and discard/recycle them.
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Thank you everyone! That makes so much sense! yes - this all started in the heat of the Philly summer. Brain started to chug back on again, hahaha!
It is cool(er) and rainy in Philly now. So far, it has been a gorgeous summer here. Fingers crossed that it continues.
I woke up with a giant mouth sore on my left tonsil, ouch! Not too many side effects from the Ibrance aside from some fatigue that hits hard some days, but the occasional mouth sore is definitely part of my Ibrance SEs.
Using Bee Propolis throat spray which feels good!
Happy weekend everyone
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Just day 3 of Ibrance. Only side effect seems to be some diarrhea so far. Does anyone else have that side effect and once your
body adjusts will it resolve?
JoynerL I have been on claritin since my chemo days and never had any pain from the Neulasta. I think the Faslodex pain is just
from the injection itself. It still hurts to sleep at night, but hope it lessens tonight. I received the injection on Thursday. Anyone have anything to help the injection site pain other than trying to have the muscle relaxed for the injection?
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For those of you with discomfort in the muscle from Faslodex shots, I may have thought of a remedy. Back in the Fall of 2016, I had discomfort/pain in my hips and legs that I thought must be from the bone mets. I had a consult with an orthopedic oncologist to get an idea about the shape my bones were in. I had friends who had broken some bones with MBC and I was concerned. The ortho guy declared that my skeleton was stable and I didn't need to be so worried. I asked if I could get physical therapy and he couldn't see why not.
I got my oncologist's nurse to call and pre-certify 13 visits with a physical therapist. I was fortunate that she was a specialist in a type of PT that puts extreme pressure on "hot spots", using her fingers, her elbow and/or sometimes a plastic tool to press them until they "resolved". At the end of the 13 sessions I had almost no discomfort! She taught me to do some self therapy and here I am with none of that pain. It's called Myofascial Release Therapy (google it) and the extra cool part is that Medicare paid 100%. Had the doctor ordered another 13 sessions, they would have paid that too.
So I'm wondering if that or just standard physical therapy might not help you guys. I learned that oncologists don't immediately think of physical therapy as a solution to pain; it's just not in their wheelhouse. (I've never used wheelhouse in a sentence...Ha!)
Here's to relief for all of you! May your wheelhouses cry with relief!
Love from PatGMc
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dsodasso, you're soon going to see that Ibrance is a fickle girl and most of your side effects will move out of the way and make room for new ones. Diarrhea isn't one I hear about a lot. WTMI alert: I'm actually much more likely to poop annoying constipation rocks from time to time. Raisin Bran takes care of it though. Here's to a Happy Day #4 for you!
Love from PatGMc
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LovefromPhilly: I work in a pharma company (not Pfizer, but the regulations are the same everywhere) and do project management for development drugs. I just checked the German PIL, Ibrance has no storage advice. That means that the drug is stable for more than 6 mo at 40°C/75%r.h. (and of course even longer at lower temps and humidities, for Ibrance the shelf-life in Germany is 3 yrs, which is quite good).
Additionally, pharma companies must perform some transport stability testing (or at least write an assessment) to ensure that no damage is caused from the travelling (e.g. elevated temps in trucks) and that the normal shelf-life is not reduced by transportation. If results are not sufficiently good, they need to do cold transport/intermediate storage (e.g. while in customs), but this is rather relevant for very hot a/o humid countries (e.g. Africa or Brasil or Asia). I cannot tell if your supplier is over-cautious or if this applies to your region.
However, one should never put drugs in a fridge that are not labelled to store them in the fridge. In liquids, the drug might fall out, because it is no longer dissolved at this concentration at this temp. In solid medications, moisture of the fridge might enter the packaging and harm the drug (some drugs are senstive to moisture causing decreased content of the drug or more degradation impurities).
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Thank you Netta! What a wealth of interesting information! From what you wrote that it sounds like Walmart Alliance may have had some screw ups in the past on their trucks and hence now they have to be extra careful. The amount of wrapping is bananas for such a small bottle and I wish, for the environments sake, they could take it down a couple notches. But happy to have the Ibrance!
Dos: I had one major bout of diarrhea on day 2 or 3 (?) of my first Ibrance cycle one, and after that no issues. Hopefully the diarrhea will calm down for you. GI issues (nausea, reflux) are common with Ibrance but diarrhea is not from what I understand it seems to affect the upper GI more.
Pat: I love MF work! I get a massage every two weeks and my practitioner practices MF too. She’s amazing and I don’t know what I’d do without her! I tell her she’s not allowed to leave
Unite a For Her is an amazing organization in the Philly area that allows me to have this amazing benefit for free. Thank you women for being incredible and starting organizations such as Unite For Her!!
Also, last night I listened to an interesting podcast about MBC if anyone is interested. Heavy medical language involved but talks about the usage of the CD4-Kinase Inhibitors and other treatments with a doc from Dana Farber:
https://itunes.apple.com/us/podcast/vpb118-interview-sara-m-tolaney-md-mph-sulfi-ibrahim/id172326636?i=1000412786329&mt=20 -
Thank you Netta! What a wealth of interesting information! From what you wrote that it sounds like Walmart Alliance may have had some screw ups in the past on their trucks and hence now they have to be extra careful. The amount of wrapping is bananas for such a small bottle and I wish, for the environments sake, they could take it down a couple notches. But happy to have the Ibrance!
Dos: I had one major bout of diarrhea on day 2 or 3 (?) of my first Ibrance cycle one, and after that no issues. Hopefully the diarrhea will calm down for you. GI issues (nausea, reflux) are common with Ibrance but diarrhea is not from what I understand it seems to affect the upper GI more.
Pat: I love MF work! I get a massage every two weeks and my practitioner practices MF too. She’s amazing and I don’t know what I’d do without her! I tell her she’s not allowed to leave Unite a For Her is an amazing organization in the Philly area that allows me to have this amazing benefit for free. Thank you women for being incredible and starting organizations such as Unite For Her!!
Also, last night I listened to an interesting podcast about MBC if anyone is interested. Heavy medical language involved but talks about the usage of the CD4-Kinase Inhibitors and other treatments with a doc from Dana Farber:
https://itunes.apple.com/us/podcast/vpb118-interview-sara-m-tolaney-md-mph-sulfi-ibrahim/id172326636?i=1000412786329&mt=20 -
Thank you Netta! What a wealth of interesting information! From what you wrote that it sounds like Walmart Alliance may have had some screw ups in the past on their trucks and hence now they have to be extra careful. The amount of wrapping is bananas for such a small bottle and I wish, for the environments sake, they could take it down a couple notches. But happy to have the Ibrance!
Dos: I had one major bout of diarrhea on day 2 or 3 (?) of my first Ibrance cycle one, and after that no issues. Hopefully the diarrhea will calm down for you. GI issues (nausea, reflux) are common with Ibrance but diarrhea is not from what I understand it seems to affect the upper GI more.
Pat: I love MF work! I get a massage every two weeks and my practitioner practices MF too. She’s amazing and I don’t know what I’d do without her! I tell her she’s not allowed to leave Unite a For Her is an amazing organization in the Philly area that allows me to have this amazing benefit for free. Thank you women for being incredible and starting organizations such as Unite For Her!!
Also, last night I listened to an interesting podcast about MBC if anyone is interested. Heavy medical language involved but talks about the usage of the CD4-Kinase Inhibitors and other treatments with a doc from Dana Farber:
https://itunes.apple.com/us/podcast/vpb118-interview-sara-m-tolaney-md-mph-sulfi-ibrahim/id172326636?i=1000412786329&mt=20 -
Lovefromphilly, I am also utilizing the benefits from unite for her! Great organization! I have been using my passport for acupuncture. I could never afford this on my own. My onc practice hosted a wellness day at our hospital and we left with all kinds of goodies. I also attended an informational luncheon just for metastatic patients at Merion golf club resort in the spring. Perhaps you were there.0
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Wow: I used to receive my Ibrance from a speciality pharmacy in eastern Canada when I was on Pfizer's special access program. It came by post in a small cardboard box with no special packaging. The pills were in a blister pack in a smaller box in a plastic bag. I had to sign for the package. Now that I receive the drug through the British Columbia Cancer Agency, I pick it up at the pharmacy there along with the letrazole (Femara). It comes in an ordinary pill bottle, with no special packing, just a label about not eating grapefruit and to take with food. I put the bottle in my purse and off I go. I assume that the BCCA gets the supply directly from Pfizer along with all the other drugs that they use.
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Hi all;
I'm very happy to report that the Ibrance/Letrozole appears to be working for me. I understand that you have to give this time so after three months (I just finished my 3rd cycle today) I am super stoked to see these results. I'll post the results below. My abdominal CT with contrast was reported separately and NED there so don't think ovarian spread is an issue....although I haven't spoken to my oncologist yet. I see him Aug 2nd. Here we go:
COMPARISON: February 23, 2018.
LUNGS AND TRACHEOBRONCHIAL TREE: Previously 6 mm nodule anteriorly in left
upper lobe has decreased to 4 mm in diameter on image #114. No new pulmonary
nodule.
LYMPH NODES AND MEDIASTINUM: No enlarged thoracic lymph node.
PLEURA AND PERICARDIUM: Previously seen left-sided pleural nodules have either
significantly decreased or resolved. For example
Previously 25 mm anterior paramediastinal nodule has decreased to 12 mm in
diameter.
Previously 27 x 11 mm pleural nodule at upper posterior aspect has decreased to
13 x 4 mm in diameter.
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IMPRESSION:
Significant interval improvement, partial response.Yahoo!!!! best regards,
Cathy
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Cathy, WHOOPEE!!!
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Cathy, all that in 3 cycles?! Congratulations!!
Pat
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Pat and Lynn;
Yes it does seem quick response especially since the original scan was in February and I just started treatment in April so the tumours were likely growing in that time. GREAT drug!! I'm pretty happy and also nothing in the abdomen re: ovarian cancer spread is the best icing on the cake. Wow.
Thanks and take care,
Cathy
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Good news, Cathy. Thanks for the advice patgmc. Day 3 post injection the pain is almost gone. Thanks lovefromphilly on your experience with lower GI issue. Hopefully that will resolve for me also. But would rather have that than constipation. I’m ready for day 4 dose.
I was adding my treatment history, but my targeted Ibrance therapy isn’t showing up on here. Any suggestions? I answered all the questions and it shows on my profile but with a check mark. What does that mean
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I figured it out in settings. Got it added.
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Cathy, fantastic news and way to rock the treatment!
Dso, I recall having minor diarrhea the first couple of days of first cycle, but none since. Like Pat, just the opposite.
Joyner, you give much more than you ask, so bonus air time to you always!
Contemplating Pat's description of the fickle girl Ibrance. At cycle 12, there still doesn't seem to be a theme to SE's. Will go a couple of cycles of low SE's, only to have a month or two of unrelated problems. SE de mois is significant lung ache and breathing issues. DH and I are going to Europe in a couple of weeks so went to emergency to rule out PE, pneumonia, whatever, before the trip. Everything checked out fine, so there's that, but frustrating to have the lingering symptoms and loss of certainty that all will be well on the trip. I know this is minor in the big scheme of things, but Come On, cancer, can a girl get a little peace of mind for a once-in-a-lifetime trip?
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