Ibrance (Palbociclib)
Comments
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Patg
Thank you for your reply about Ibrance. I was very nervous when I read all the side effects!! Good to read what others have experienced with the combination.
I also did not know Zofran was (Odansetron) - was there a reason you choose Phenergen? Glad to read that most do not have trouble with nausea while on Ibrance. Taking Zoltan at night at half the dose sounds like a good idea. Sleeping has been somewhat illusive lately.
Your encouragement is very appreciated.
Annamaria
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Welcome to the Ibrance dance!
AMP - I find taking Ibrance at night works for me. A couple of nights I woke to use the bathroom and found myself just a little nauseous. However, I went right back to sleep. When I woke in the morning, I felt fine.
Jaylea - thanks for checking in. Been thinking about you.
I just finished my first round of Ibrance. Yay! Now I am On my week off. I get my bloodwork on Wednesday (2 days early), so we will see what happens. Been feeling fairly decent. I work full time, have two girls (10 and 8), I am the president of the PTA and am constantly going. Keeps me sane and living. Someone mentioned their 15 day bw ANC was at 1.9?? And they had to stop. My bw was at 1.2 and my MO told me to keep going. Interesting.
Hello to everyone else. Love hearing how everyone is doing.
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Holly, you're the perfect dancer for Annamaria to meet! Look at all the plates you're spinning while Ibrance does its work! I'm so impressed.
Annamaria, I also take my meds at night as I sit down to eat dinner.
About the nausea, it's the weirdest thing. When I feel it I just go ahead and throw up if I can. It's over in no time and I can actually sit down for a meal immediately following the episode. There is not the lingering nausea that I've had in the past with chemo or with those vomiting viruses. Way different.
Holly, I've been fortunate that all my counts have stayed either normal or barely below. I think I did delay starting for one week early on. My doctor said in the beginning that we would not worry too much unless things got drastically low. He said there seems to be less infection than when chemo causes the low counts and that we wouldn't be using Neulasta. I've only been sick once on this treatment, having a nasty case of pneumonia in the winter of 2018. (I took a couple of months off Ibrance then,) Other than that, not even a cold in 30 months. I've been on 100mg and 75mg, off and on. I even spread out my treatments to see if I could stay stable with an extra week off but had some progression so went back to 3 weeks on and a week off.
This is all a grand experiment and we're making MBC history!
Love to all from PatGMc
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Since I’d already been on antihormonal for almost 8 years, switching to another antihormonal and adding Ibrance has been a fairly well tolerated transition.
My blood work results popped up on my online chart today and yes, the wbc count was at 1.9. The blood work showed other highs and lows, usually all counts are in normal range, so my onc may be looking at a bigger picture than just wbc count.
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I was just looking at my blood test results again and think perhaps some clarification is in order.
My numbers:
wbc cell count, low at 1.9
The neutrophils (manual) is .65 also low
And segmented neutrophils is 34% which is low.
I have zero medical background, but an onc may be looking at these addition numbers as well as overall wbc count.
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Those number dont look that bad. What about platelets?
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Hello all, I'm sure someone else on here may have already posted this, but this trial is pretty interesting for those that have developed resistance to Ibrance (or other CDK4/6 inhibitors) and have FGFR amplified tumors.
https://clinicaltrials.gov/ct2/show/NCT03238196 - It uses Faslodex, Ibrance and Erdafitinib (FGFR inhibitor) to overcome the resistance to Ibrance.
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Hi Ladies,
I have been on Letrozole and IBrance for 18 months now. Once in a while I get really tired. Comes and goes. But for the past couple of days, I am feeling extremely fatigued. I don't have the energy to do anything. I feel like taking a nap. but fight it. I don't want to go off the meds, since it's helping me.
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Christene, what dose are you on? You might want to talk to your MO about lowering the dose. Sometimes that works for fatigue. Someone just posted recently that the lower dose was not helping with fatigue but I think most people say that it does. Your problem will be your doctor poo-pooing the fatigue issue, a very typical response. Be prepared with QOL examples.
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Christene, don't underestimate the letrozole and the fact that your newest prescription may have come from a different manufacturer. I'd call the pharmacist and have him check that out. Many of us have extreme fatigue at times from Ibrance but I can't imagine that all of a sudden happening after 18 months. You could also consider switching your AI to Arimidex. No assurances that it would change anything but Quality of Life is worth some experimenting.
Love from PatGMc
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jaycee49 Letrozole tablet 2.5 mg IBrance (palbociclib) 125 mg Every visit Doctor asks about my side effects. Each time I tell him, thinning hair, loss of appetite and very tired. Plus the pharmacist asks the same thing. Maybe to them, these are Mild Side Effects...
PatgMc - Just recently I had to switch pharmacy. I was dealing with a nice company my Oncologist set up for my IBRANCE. This pharmacy as of '19 was told by my insurance co they would no longer be in network. So I had to switch to what my Ins offered. Interesting you say about different manufacturer... Now you got me thinking... Yet the Ibrance is labeled Pfizer... My LETROZOLE has always been filled by my local pharmacy. (looks like nothing changed)
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Hi Patg - do you take you Ibrance at dinner and then vomit your pill up? Or after you vomit and retain the daily dose?
Annamaria
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Holly1202 - good to read your experience with Ibrance and nausea. Wondering how women who work handle the nausea or even if it is a problem during their work hours.
Do you drink the 8 glasses of water that is recommended
Are you in the Northern or Southern part of Oregon?
Annamaria
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I am surprised how often I see it suggested to switch AI's. My dr tod me this is considered a drug failure and one usually can only do that 3 x becore IV chemo is needed. I would think one would avoid switching unless there is progression. I'd explore all options before switching. Or have I been misled. He did say there are many treatment options but it gets tougher to treat with more lines of therapy used.
Gailmary
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Gailmary, switching AIs is not the same as switching therapies. They essentially do the same thing but I've known many people through the years who tolerated one better than the other among Femara, Arimidex and Aromasin.
Christene, your pharmacy may get letrozole from different manufacturers each time they make a purchase. My pharmacist said they are constantly negotiating to see who has the best price among the generics.
Annamaria, my nausea rarely happens at night. Sometimes it's first thing in the morning before I even eat anything. The few times I've had it after taking Ibrance I've used under-the-tongue Zofran to calm things down. So far, so good. (Hey, those Ibrance pills cost about $500 each....don't want to be upchucking them!)
Love from PatGMc
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Christene, the manufacturer may not be listed on your prescription label (different states have different requirements); if you post the NDC number, I can tell you who made it. The chemical letrozole itself is the same, but different companies use different binders and fillers that you might have a reaction to.
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Patg - thanks for letting me know.
I was shocked when my doc told me the price of the drug and my co-pay then explained the “donut hole” to me once satisfied reducing my “co-pay” very low.
My point exactly about chucking up the medicine at It’s cost. But, also trying to figure out when to take the pill.
A pharmacist who met with both my husband and me recommended taking the pill in the morning for better metabolization. I decided to take it at night just in case things went wrong. This morning no physical SE’s - but only the 1st dose.
From what I read, problems with this drug begin around the 3rd week with some women.
One of the “warnings” with Ibrance is avoidance of crowds. How do women who work deal with this warning?
Limitation on mobility made by this drug literally grounds me from many things in my life: grocery shopping, general shopping, visit with my family and grandchildren and community functions. How have you and other ladies handled this limitation?
All advice or experience is so welcome.
Thanks Annamaria
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Christene - I went from Aromasin to Arimedex when my ins wouldn't cover. The AIs are interchangeable. When my ins did cover Aromasin, I went back. I had fewer side effects. The Arimedex gave me hot flashes galore. And do look at the manufacturer, they can be slightly different.
Annamaria - i live in N Oregon. I eat dinner around 6 and take my pill at 8. I drink lots of water during the day, but always try to get at least 24 ounces down between dinner and going to bed. So far it has been working. Slight feeling of nausea when I get up to pee out those 24 oz of water! At work, I try to snack throughout the day. Little meals. My big one is dinner. When I start to feel tired, I go for a walk. Moving around has been great for battling fatigue.
PatgMc - I am not so worried about my counts. I will let my MO do that for me. I have enough to worry about. However, I am thinking about asking her to lower me to 100. I need my counts up, as I am chaperoning my 10-yo's class overnight field trip. Two classes of 10 and 11 yo boys and girls at a YMCA camp for two nights. Should be awesome. That happens at the end of May.
Ann- thanks for the article.
In a few hours, I am headed back to school for PTA stuff. We are having our auction in a few weeks and we are assembling gift baskets. Anyone here a Game of Thrones fan? I am looking so forward to the final season. Happy Saturday!
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Annamaria my pharmacist and MO said to do go out and do things, but just remember to wash and sanitize your hands frequently. Stay away from people exhibiting illness due to a compromised immune system. The docs told me to go to the gym, go shopping, etc. Let your body tell you if it is too much. I have not changed what I do or where I go. I am just much more observant when I get there or carry around sanitizer.
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Holly - thank you for answering so quickly. You have answered my questions. I will be assuming normal life and plan a trip to see my family.
I see my doc on the 13th of May and will chat with him about all my concerns. It is always good to hear from other women going through similar treatment.
Have a great time at the YMCA event. I swam for Oregon and spent many many days training at the YMCA pool. Great organization for the community and children. Parents and volunteers are the back bone of the organization.
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Christine...last year I started receiving the Ibrance from Pfizer. On the second bottle I had major tiredness. Reported it to Pfizer. Did not keep the bottle and they could not check the lot number. I was on. 75mg. Had several bottles after and no problems.. If you still have the lot number maybe you can Ck it out from the supplier.0
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I just might be losing my "super star" status on Ibrance..LOL My neutrophil count was pretty low. I will start month 12 of 125 mg. of I/L on Tuesday. But, I have to return after two weeks for labs to recheck my counts. He did tell me to eat lots of fruits/veggies with Vitamin C. I have been pretty lax in that department, so maybe that was a cause of my low count. We shall see in a couple of weeks.
I've never had an issue with Ibrance...no nausea, fatigue etc. I take mine at the same time, with dinner, every evening. Hoping that "no side effects" continue.
Wishing all the newbies an easy journey.
Hope
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Annamaria, I and my onc agree to go out and live your life, just be observant. I shop, go to church, take a cruise, go to the beach, and even go to Disneyland, etc. My 3 year-old granddaughter lives with us so I wash my hands a lot, and yesterday i attended her pre-school function. Wear a mask on a plane or anywhere you are enclosed for a long period of time. I travel a couple of times a year back to MO to visit my son and grandbabies. Work, live, and love. I am going on 3 years with I/L @ 125mg. Yes, I get an occasional virus (from my granddaughter) but I can usually fight it off. It just takes longer.
I take my meds with a good dinner with some fat in it. It is recommended you take it with fatty food and I am inconsistent with breakfast. I had occasional nausea the first 6 months or so but it is rare now. My main se is fatigue and occasional diarrhea. I do get random neuropathy pains, but it does help to exercise regularly. I walk but I can't go far anymore. Mostly I am thankful for this medicine that has given me hope for a longer life.
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From the lbbc conference in Philly. Nothing that we all havent heard before but a) I find the lecturer md DeMichelle to be very positive and enthusiastic b) the most interesting bit to me was the one where she mentions studies are proving that once CDK6 fail due to cancer cells learning to take a new driving pathway, you can take a break from Ibrance &co. and revisit later on because the cancer eventually can go back to the previous path.
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From the lbbc conference in Philly. Nothing that we all havent heard before but a) I find the lecturer md DeMichelle to be very positive and enthusiastic b) the most interesting bit to me was the one where she mentions studies are proving that once CDK6 fail due to cancer cells learning to take a new driving pathway, you can take a break from Ibrance &co. and revisit later on because the cancer eventually can go back to the previous path.
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Good Saturday all
I started at 125 after a year reduced to 100 then 7 months or so on 100 reduced to 75 for it will be 4 months in June. I didn’t see any improvement in numbers and still felt fatigue on 75 so in July I’ll go back to 100. I take faslodex shots with.
I also travel and go out to events. I bring a mask but don’t always wear it.
My se’s Have been weariness for sure but after I sleep at night and take a nap if needed, I get busy with something, get moving, and socialize.
Have a great weekend
Tanya
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Into light
Wow - great information and advice.
I am newly diagnosed with bone/liver Mets and have been searching for many answers to my new way of life. You answered many of these questions: shopping, cruises, Disneyland, etc. activities all crammed full of all ages of people in varies health conditions.
How lucky you are to have your granddaughter living with you - to see her everyday what a blessing.
Also, the tip of incorporating fat into my dinner meal good information for me. I definitely will use all your information and I feel encouraged that my life is not going to come to a stand still.
Annamaria
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This is not a new Time magazine article but every time I read it I'm encouraged. I pulled it up tonight as I checked on Judy Perkins via Facebook. Judy is an MBC survivor who had already said her goodbyes and expected to die from multiple tumors. She didn't die and her Facebook wall shows her doing some sort of race I couldn't even wrap my mind around when I was 100% healthy! If you're not on Facebook she's a good reason to join.
Her story is the medicine of hope! It looks like she's cured! I think this is her 4th year of remission.
http://time.com/5415044/breast-cancer-immunology/?...
Happy Saturday and love from PatGMc
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Daniel - great video you shared. Very informative.
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Hi gang - just checking in to say hello. I am catching up on all of your updates, welcoming newbies and sending prayers to those in need. I am a little late on prayers for Pat's friend's husband, but it sounds like he is going to be ok, which I was so pleased to see.
I do have a question:I am now on a monthly antibiotic for the same upper respiratory/laryngitis thingy that I get at the end of every cycle. I am going to talk to my Onc about this because it seems pretty ridiculous to take an antibiotic once a month. Last month I tried to fight the infection on my own and it just got worse. I finally gave in and started the antibiotic - which always takes care of it. This has been going on for about 7/8 months now and then symtoms are the same every time. Sore throat, low fever, cough/congestion, voice loss, general malaise. My counts drop with 125 Ibrance but have not ever been low enough to delay or make a change. Anyone else experience this? Would a Vit C shot maybe help?
Love to all,
Lauren
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