Ibrance (Palbociclib)
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Hollyli— I was also diagnosed stage 4 in February after an earlier stage dx in 2015. I think having kids still at home, being in the thick of that caregiving also presents different challenges, anxieties, fears and even griefs ❤️. Mine are 12 and 16.
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Dianeliz, I’m curious, too. I’m midway into my second cycle, but won’t be getting scans until 3 months in...
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Hi Jenny - I was scanned in 3 mos because of many liver mets and aggressive disease. I actually feel good if I don't look at my scan :-) I am clear except liver for now had CT and bone scan. Because I had lymphoma 19 years ago I am wondering if it makes it more difficult to stop the bc. I actually maxed on oncovin and couldn't have any more. i have to say I don't love my doc, I had to switch when me moved, he isn't helping me stay upbeat. I think I need to do something about that.
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jenny is absolutely right. I was diagnosed stage 4 at 61. You have way more to loose when your younger. No doubt its scarry for all of us. It took me about 6 months to get over the worst of the anxiety. I still have to remind myself 2 oncologist said i have another 20 to 30 yrs. No after looking at my age revised to say 20 to 25 yrs yet to live. They will treat as a chronic illness.
Best of luck to all of us
Gailmary
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hello everyone, I have question I just started week 3 of my first cycle of ibrance and I woke up with a nose bleed. Has anyone else dealt with nose bleeds?
As I read though many threads because I'm still a newbie and trying to educate myself. I was wondering everyone mentions they continue their daily activities do any you deal with pain or weakness? I have mets in my bones so i feel limited on things I can do, I try to live my life but my back hurts so I'm constantly taking breaks. I try to walk 30mins but my legs are weak, does it get better? any suggestions on getting out of this slump?
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DianeEliz- How do you know that it is the Ibrance that is the problem? You are taking it with femara, and its more often the case that the cancer is resistant to the femara, in which case faslodex-Ibrance might work. Xeloda is a chemo but oral (pill), however depending on the situation you might have better options that to go onto chemo as your firstline treatment.Also it can take a few months for the I-F combination to show full force, and some docs are reluctant to drop it too soon and potentially miss a good treatment. For sure consider getting a second opinion.
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Hi Momdin. I have not had nosebleeds on Ibrance although I seem to remember others have so perhaps they will chime in. Weakness is common, and I have slight back pain from my mets. My pain improved as the meds work, but I still can't bend over much before a dull ache commences. I was told to do as much as my comfort allows so don't limit yourself unless you have to. After almost 3 years I still walk about 30 minutes, go to the grocery store, cook dinner, do laundry, travel some, etc. Taking breaks is what I do in between. Pace yourself and you will find you can do most things. I have had to let go of more strenuous activities, but you will find your limits and comfort zone. Best wishes for a long, productive life!
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Hi Cure-ious - I like your handle and how you think. I don't know for sure. I had a second opinion when going for the Ibrance, both seem to feel then that this is the next step. I heard that it takes time sometimes but I seem to have progression in short time spans, he may not want to wait. But my apt is tomorrow and you are right, I am jumping to conclusions. I am 48 with a 10 year old and it is important for both of us not to jump to conclusions. But she is a glass half-full glass kiddo, I am a pessimist by nature. We are not overloading her with a lot of the details of this, she knows its back and we have lots of things to try yet. There are times I think this would be easier if I were on my own, sometimes not. Sigh. Good luck and medicine to us all.
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I had blood work again today one week since I was told my wbc count was too low and the nurse said the wbc still is not where it should be. (She did not give me any numbers). So no Ibrance yet since stopping last week. I am wondering how the wbc count can be raised. Anything? More rest? Any vitamin supplement? Certain kinds of food? I'm a little bummed out at this point.
Momdin, I agree with IntoLight, its a matter of pacing ourselves. I try to work smarter not harder. I take lots of breaks. I had a walking routine, but the last month there's been a big upheaval in my life and I can't fit the walking in. I don't worry about it. The main thing is to stay active but if you cannot walk 30 minutes just try 15. Don't be hard on yourself. I take 8 hour Tylenol which helps the aches. Also, think of some things you really really want to do, and do them. If it is soak in a tub, go shopping or eat a Big Mac, do it. Since things have been crappy here, yesterday I did some shopping and ate some ice cream and took a break from all extra responsibiities I've been dealing with lately. It helped clear my mind a bit. Sometimes we need a break from the chores of life to help us out of our slump.
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Hi all. Just thought I would check in this afternoon. I just got home from my 3 month CT scan. I had a little more anxiety with this one. Usually no big deal having the actual test, but today I just didn't want to do it. You know the feeling, just didn't want to face it today. I am nervous for the results. Last CT in Jan showed somethin somethin on the liver and we will relook at that area this time. I have my appt with the MO next Tuesday, but she said she will call if any issues and will see me before Tues. Just feeling anxious.
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Candy, pulling for good results on your ct! I had so many tests at diagnosis and shortly after, I dread another already.
Diane Eliz, Thanks for your response. I've learned a lot about ibrance here and thought most oncs give it some time to kick in, but your doctor is the one who will count, ultimately. Cure-ious had a good point about it being the Femara possibly. Please let us know how it goes at your next appt.
Divine, Did you stop at the 2 week mark or at end of 3 weeks? I've had to wait two weeks to restart each time but counts came up ok. I haven't seen any surefire foods to help but broccoli and salmon came up in my friends unofficial search about bringing up wbc. And blueberries were just mentioned as cancer fighting, but again, unofficial. Sorry, no real help, but hope your onc will have you lower the dose or just wait for improved counts. Mine was not concerned about two weeks off instead of one, said we'll see how next couple cycles go.
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Momdin, the first few months I was on Ibrance I had a slight problem with blood in my nose, but only when I blew my nose. It didn't ever just start bleeding. After several months, that went away. The Ibrance fatigue is a real thing. Most of my bad side effects come from the letrozole, I believe. Joint pain, feeling 100 years old, dry skin, hair, and everything else, hands and legs so stiff. I told my doctor that when I walk it feels like I'm using someone else's legs. However, I try to walk and do what I can and I do feel better for a while even though I can't move for as long as I'd like.
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Divine I know my counts were low and once they gave me neulasta. I take iron vit c turmeric omega fish oils calcium I don’t know if anything helps. I eat spinach and things but he also reduced from 125 to 100 mg. I only missed a week when I did radiation.
I hope this is helpful.
Tanya
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Philly - thanks for the wise words. I will have to check out those podcasts. And I like the 10 min pity party. I think yesterday I was in that pity party feeling every 5 minutes. Today, it was a good day.
Jenny and DianeEliz - I hear ya about kids. The way we play the "game" changes when there are young kids. Hang in there. We told our girls, but told them age appropriate information.
Went to see my MO and had my blood draw. My neutrophils were .84 with two days until I start taking Ibrance again. So she told me to come back on Monday for another draw. So it is a holding pattern for me. She is keeping me on the 125 regimen for now. She remains positive and hopes I will be on IF for years and said she has patients who are four almost five years. Hopeful news. I go back in four weeks for faslodex, zometa, and another check in. June is when I will have my scan. Hopefully it wil show NEAD and then my check ins will the MO will be further apart.
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Holly,
Keep in mind that the low white cell counts do not seem pre-dispose patients to getting more infections, the way it does with chemo. Ibrance just arrests the growth of those cells, it doesn't kill them off (as chemo does), so they quickly bounce back in the game on the days off. They are testing a 5 days on two days off alternative dosing schedule, which may be more effective and/or better cut the fatigue, but no data out on that yet
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I live in British Columbia and thought I would let you know about our chemo rooms both in Vancouver and in Victoria. I had chemo in aaVancouver in my first round in 2012/13 and there we had semi private rooms in size from 2 to 5 patients. Most had great city views and there was a sense of camaraderie in all. In Victoria where I am now and will have chemo tomorrow, my 14th infusion, there is one private and one with two chairs. The rest, 16 chairs are in a semi circle. The chairs are very comfortable recliners and we always have as many warm blankets as needed as well as pillows. At first I was unnerved by the system but now find it just fine. I think the rationale is so that any nurses can be there in seconds for alarms. We each have an assigned nurse but often see 2 or 3 in the course of treatment mine being about 2.5 hours. After years of cancer, I have no problem at all with what could be called lack of privacy. We are all in the same boat. Birthdate is always used and I admit to being tired of saying but it is not the end of the world.
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cute-ious, I like the sound of that. Do you have any links to info about that study?
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hello friends!
Reporting in, everything is a-okay as far as I know for certain here.
My mind keeps wandering to thoughts about how can I live more of a “normal” life, achieve goals and dreams, and what are these goals and dreams now? Has MBC changed them for me and if so, how? What is different now and should MBC be able to have such a strong control over my life this way?
Part of the answer to this challenging question for me is how I have had to recognize the need for me to take time for myself for sleep, downtime, lots of rest, as well as increased activity of working out and exercising.
I honestly don’t know how “normal” people function with 9-5 jobs PLUS making it to the gym everyday plus having a social life, getting enough sleep, eating well and cooking healthy foods for themselves and possibly taking care of their families.
Prior to my diagnosis I had a pretty strong 5 year goal/dream that I believe was attainable. But MBC has knocked me down from the intensity, the drive, the need to accomplish. Instead, the need to rest and heal my body has taken precedence. My 5 year goal is now slowly degrading dream.
On another note! I have been on a 2 week break from letrozole to see if that is the culprit of my GI issues (diarrhea and lots of gas). And welp, I am on day 9 and I haven’t had any diarrhea and the gas has calmed down tremendously. Not sure how this will be addressed and/or dealt with, with my MO. I did discuss with my MO and the resident MO the idea that was proposed to me by you folks about the brand of letrozole possibly causing problems. I wonder if we can change the brand?
Okay - off to ponder life more!
Hugs and love to all,
Philly
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Hi IChangedmyname.
Have you checked to see if you are super sensitive to lactose? I believe it is an ingredient in Letrozole. Maybe take with a lactaid tablet to see if it helps? Something to discuss with your MO and GI physicians.
I am lactose intolerant and those symptoms sound familiar to me. Does your belly swell after eating/drinking any milk products? Hard cheeses seem to not have lactose.
I take my letrozole/ibrance in the morning with whole fat yogurt, coffee with light cream. Also take my vitamins and lactaid tablet. No problems in the GI area.
Just a thought to help you.
S
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hi Sandi!
Good question!
I don’t “do” much dairy in general - I’m not a fan of oooey gooey oily cheeses. And I don’t drink milk (never liked it, even as a child!). My only dairy necessity is cream in my morning coffee and the occasional ice cream attack. I do use grass-fed butter when cooking sometimes. I have considered the lactose intolerance possibility but it just doesn’t seem to add up for me as I believe I would have diarrhea after my ice cream, and cream in my coffee and overly buttered toast. So I think something else is going on!
I do know that some folks, after being on chemotherapeutic agents, develop lactose intolerance. So another reason why I wasn’t throwing the idea out with the dishwater.
I’ll keep on keeping an open mind to all possibilities! Right now I am just happy to not be farting all day and all night and having diarrhea! 😂 lol
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Yes..farting all the time would be a social downer. You will figure it out. Keep us posted if Letrozole is truly the culprit!
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Just wondering what you ladies are having to pay out of pocket for Ibrance. If you want to let just me know, please send me a private message (wanderingptp@gmail.com). It appears the grant money has run out and I will have to do a co-pay. We survive on social security so it appears my options will be to die broke or just die. Really bummed about the whole situation. I think my co pay will be between $3000 and $250 per month. We have medicare and an Aetna supplement. As it is our health insurance for both of us is almost $900 per month which is a huge chunk out of our money.
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Hi WANDERING, My co-pay for Ibrance is $250. If you have a private insurance plan, then Pfizer has a co-pay card for it. You mentioned an Aetna supplement, so call Pfizer and check if that counts? This link seems to have some resources. https://www.ibrance.com/financial-support-resources
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I have not paid anything for Ibrance for three years. Yes, it is a full time job. I check the foundations at least once a week. I just looked. PAN has no money although they did last week. PAF right now has funds for breast cancer. Their MBC line is closed but they have let me use the BC fund before. You have to get on it quickly or the money will be gone. The $3000 you mention should only be for January. The lower amount is for all subsequent months. Not only does cancer keep us hopping but getting money for tx does, too.
https://www.copays.org/resources/breast.php
Call them today. If you have gotten grant money before, you will qualify for PAF.
Depending on your financial situation, Pfizer will be an option, too. I was approved by Pfizer for free Ibrance for a year. That is the advantage to using Pfizer although it is harder to qualify. You don't get jolted by the money issue every few months like you do with the grants. PM me if you want.
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Hi WANDERING. My co-pay is $150 but I use the Pfizer co-pay card and that pays me back.
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Thanks for the replies. I'll work on that. Hard to figure if it's worth the fight if you don't have money left for ANYTHING and when you die you don't leave anything but debts behind.
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wandering - can you call your MO's social services office? They have helped me immensely with financial issues and constraints at the hospital where I see my MO.
Sending lots of positive vibes for $$ for treatment! It is nuts how expensive it is!! :-(
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Thanks. I talked to the lady at the oncologist's office and she said that right now it's out of her hands. I need to wait and see if CVS specialty pharmacy can come up with some grant money. It's pretty self serving that Pfizer is spearheading the money - pretty easy to figure out which way the money flow is going. If I sound bitter - I am.
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WANDERING, I was just thinking of the same thing this week. I have insurance through my job, but some days I'm so fatigued and when I cant keep up I am so terrified of losing my job because I wont have insurance then. I cannot even be claimed as anyone's dependent at this point so really not sure what I'd do in that case. The newer the treatment, the more expensive it is too
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I was screened through SAGE at our hospital and when breast cancer was found, Minnesota had a program, Medical Assistance for Breast and Cervical Cancer. It's not based on income or assets and covers all medical care as long as you need treatment for Breast cancer. It's paid 100% of my Ibrance and everything else. Problem is, it ends when I go on Medicare. But there's anothet program here in Mn, Medical Assistance for employed people with disabilities. There's no income limit but a sliding premium fee. You can have it along with Medicare. It's good to check with your human services to see if there's any help. I didn't know about these programs before.
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