Ibrance (Palbociclib)
Comments
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Sorry to hear of your progression Cureious and Katrose.
You ladies are encouraging and full of support. I love the positivity and knowledge sharing. Thanks so much for being here for everybody. It’s much appreciated.
Tany
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Thanks Tanya!
I also appreciate everyone's encouragement and support - thanks everyone for being there!
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Candy, she continues the plan I am already in. I meant if I have started with her first line was hormonal therapy only. Teaching hospitals, sometimes, follow their own rules.
Katrose, you have a great news that your brain MRI is normal, and not agreat news about pet results. That is good that both MOs have plans ahead, and you have opportunity to get a second opinion as well. Let’s focus on abdomen MRI for now, I’m sending positive vibes for good results. (((hugs))).
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East Coast, Hi! Welcome to the thread! Yes, it's a bit of a balance between getting people to understand the seriousness of a stage IV diagnosis and also dealing with sobbing individuals ready to attend your wake. There is also that awkward encounter when you run into someone you haven't seen for awhile (cancer ghosting) and they exclaim outloud "omg, your still alive!!). True story. Not sure how one really reacts to that sorta thing so I just pull a Nick Sandman and smile back, it's all you can do really. I've found Ibrance to be tolerable compared to early stage horrors. After progressing quickly after chemo and surgery and before I could get to radiation, I wasn't very optimistic to have a long run on it, but to my shock im 15 cycles in so far. The hows/whys/how longs/what to expect are unknown to us unfortunately. I wish I had a crystal ball sometimes and others I wish I didn't. I have to agree I find the pandemic a huge wrench. I have had to miss alot of memory making events because venues closed, shows were canceled. I emoted lately to my spouse that this made MBC alot harder, far less outlets to "escape". One thing I stick to now is allow myself to feel whatever it is I need to on any given day and let the day decide itself and go with it. Welcome welcome welcome to the thread! If you want another youngster to chat with, I'm available
Blue state, I did genomic testing early stage with MyRisk by myriad which tests for a bunch of breast cancer gene's along with 6 other types of cancer; ovarian, colon etc. All came back negative. Then I did foundation last February, foundation one did offer to help with dealing with insurance if they resisted paying. Only showed keap1 mutation and nothing else. So I guess it depends if your looking for a specific mutation to see if you qualify for piqray which is targeted. Or could do a biopsy or a liquid one to see if your markers changed and your triple negative or her2+ which opens different options each way. I guess what would give you peace of mind and the most useful information?
I'm so sorry for those who have progressed.
RK, Ciaci, Philly, check in soon.
Tomorrow is grocery shopping day. I'm half tempted to proclaim at the checkout, "When your at the checkout and you hear the beep. Think of the fun you can have on supermarket sweep!!". Yeah I've been binging old game shows lately.
PS, the Ibrance winds are again tooting, half the fun these days is getting my husband to pop his head in from the other side of the house he heard them from and exclaim laughing "that came out of you? I know you weren't moving furniture!". Lol
Take care ladies
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Thanks so much Snow-drop for the positive vibes and steering my head in the right direction!!!
(((Hugs)))
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BlueGirlRedState,
I’m confused that your doctor said there’s no way to know if your experiencing new cancers or metastasis. I biopsy will show Breast Cancer cells no matter if it’s in your breast, bones, liver, etc... another opinion coukd really help.
Cure-ious, happy to hear that your progression is localized. That’s good news, or at least as good as progression news can be.
hugging all who are having progression or making big decisions on treatnebt
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Rabbit - is it the old style one where it practically looks like a Nickelodeon game show from the early 90s? Cause that one is awesome. I am partial, however, to no whammies, no whammies, no whammies (ah the irony. My square did not land on the shitty sailboat prize, but a whammy).
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Hi Miss Rabbit...I know what you mean about Covid taking precious time from us. I've been feeling that more and more lately. Also, I have another worry now. My daughter probably has Covid. She had symptoms of what we thought was a head cold for a couple of days. Then she lost her sense of taste and smell. She has been quarantining in her room and went and had a Covid test this morning. It will take a few days until we know for sure, but chances are it's Covid. I'm worried for her but she is young and healthy. I am also worried about the rest of us getting it. We are taking all the necessary precautions but I'm worried I may have contacted it from her prior to her symptoms.
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Lol,Sondra, yes ma'am! That's the one! I am partial to the older Press Your Luck too, the whammy dances make me smile. I'm also a big fan of the original price is right with Bill Cullen, black and white, they have full episodes of it, lots of them on youtube. On that show you could win a real house with a foundation, a car, an inground swimming pool and a helicopter all in one show, seriously! lol. It's great. Can you imagine if price is right gave away homes on the show now? I appreciate the older game shows etc, not so heavily produced and just fun stuff.
Jackie *hugs* Oh no. I hope the test comes back negative and is just a bad cold or flu or something and not covid. You be careful. Get some good vitamin c in ya to support your immune system. I try to drink a glass of orange juice a couple times a week at least ever since this thing hit last yr. I heard some people are taking emergen-c gummies or powder drink or vitamin c, vitamin d and zinc proactively, could your MO be open to you taking those supplements or even just a good multivitamin for a bit since its possible you could have been exposed just to support your body to fight off something if it needs to? Try not to worry although that's probably impossible. *Hugs* *hugs* *hugs*
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Hi all - I haven't posted in a week or so and there is a lot of stuff going on!
BlueGirl - I agree with RRabbit and others that a foundation 1 test would be a good idea to see if this cancer has new mutations that targeted drugs can work with. Please keep us posted!
Cure-ious - sorry to hear that you have a progression. You are such a great advocate for us and yourself and like others have mentioned, sounds like this is treatable . Please keep us posted on your treatment and how you are doing!
Katrose I am sorry to hear that you have a progression but it is good news that your brain MRI is clear, and you have a plan with piqray and possibly will get a second opinion ? Keep us posted!
Snow-drop - do you have more scans coming up? We're here for you! Let us know.
EastCoast - welcome to the Ibrance thread. We do understand how you are feeling, and as Rabbit said - it is such a balancing act to deal with how OTHERS are dealing or not dealing with our reality. It bothered me back in 2008 with stage 1 so REALLY gets on my nerves now
might also be the lack of estrogen making me moody (haha). I decided this time to not tell many people until I am struggling with treatment or progression, which hasn't happened yet. Family and a few close friends know and to be honest, I don't know if my local close friends really get it. I look fine, feel fine and have continued to work (by choice). If I switch treatment or start to have some side effects, I will of course have no issue sharing. I hated the random questions when I was doing chemo at stage 1 so imagine I would be very annoyed now. RRabbit - I will have to watch some old game shows! My work has been quiet so I have been busy purging/spring cleaning as we are hoping to downsize this May. Listening to some podcasts that are entertaining. My current favorite is "SmartLess" - they have great guests on that podcast! However, youtube and the amount of shows etc you can find on it is amazing.
I agree with Rabbit that Covid has amplified the feeling of stolen time - having stage IV cancer during a pandemic truly sucks. My husband and I are making some travel plans for the summer, wishful thinking but we can always cancel! We have started hiking a lot (weather permitting) and that has been fun. 8 miles yesterday!
JACK5IE - I hope you don't get Covid and hope your daughter just has a cold. You're doing the right thing by trying to isolate and hope your daughter gets results soon. Keep us posted! Definitely call your oncologist if your daughter tests positive.
RK, Jaycee, Ciaci and others - check in and say hello if you have time:)
Sending everyone good wishes for this upcoming week!
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Thank you for your comments ladies! I'll keep you posted.
Miss Rabbit...I am going to call my MO tomorrow to ask if it's ok for me to take Vitamin C and Zinc.
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April, just to let you know, jaycee49 has been on another thread, so she’s here. Hopefully she’ll pop in and say hello.
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Jen & April, Thanks!-knowing the PET-CT showed progression I didn't want to read the details till my MO could consult (dumb), so I spent a week imagining it was dire, but now I'm the happiest person ever to have progression. It feels like a new start, 5.5 years in, time to plan some fun trips and see friends, if Covid would just get out of the way..
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Rabbit - then I guess you can definitely understand the feeling of diagnosis like a bad game of Plinko!
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I've been spending some time in the death and dying thread, one of my favorites. (You can go there to read any of my posts.) I've been working on getting a death with dignity law passed in my state. I needed some interested people to bounce ideas off of. I found them and got my writing ramped up to where I could help my group with the legislation. Emails go out to supportive and undecided legislators today. The pandemic isn't helping but I may get to testify remotely where, if there was no pandemic, probably not since it would be a five plus hour trip to Santa Fe. Thanks for asking about me, April. I'm still kicking.
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Thanks aprilgirl1...I'll post an update when I find out the results of the MRI abdomen.
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This is all such a nightmare. Sorry to hear those having progression and hope it gets contained, that tests are sometimes conflicting. I was not very clear when describing new cancer/recurrence etc. My doctor thought there was no real way of knowing if the 2009 cancer, 2016 cancer, and 2019 cancer were """new"""" or recurrence. She thinks new due to time interval between the first two and location with the third. She thinks previous treatments worked, but each cancer was new. Even though she now thinks that maybe the Ibrance is not working. She is concerned about metastasis since a "rash" on the chest showed BC. Regular CTs have not shown any metastasis, and she thinks maybe the CTs missed something and/or that the cancer is very aggressive since the rash just showed up. She is scheduling a PET. I need to learn more about a more extensive genetic profile, and whether it would help with treatment options. A test for 20+ markers specific to BC in 2019 did not find any. A second opinion might be the way to go, not so much doubting the diagnosis, but treatment options, maybe a cinical trial. Maybe I'm just the odd duck.
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My daughter tested positive for Covid. I posted details here.
https://community.breastcancer.org/forum/8/topics/878677?page=1&post_creation=true
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JACK5IE, I'm so sorry. I pray you don't get it. Did you ask oncologist if you get it whether you should come off the Ibrance to help your immunity? That's what I would do. I'm not a doctor, though, so I can't say that's what they'd recommend. Hugs. And I hope your daughter feels better soon.
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KBL...thank you very much. They told me if I start seeing symptoms then I will stop treatment temporarily.
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JACK5IE, I’m hoping you don’t have to worry about that. Thinking of you.
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I'm on Ibrance, I had a co-pay card and never had to pay for it, it's been 11 months. I'm supposed to start Medicare on February 1 and just found out I can't have the co-pay card if I'm on Medicare and the Ibrance will cost more than $14,000/year. I have a whole unopened box of 125 mg because I was switched to 100mg. Just wondering if anyone has 100mg they don't need. I'd pay... otherwise I'm just going to quit it and take my chances or go to IV chemo so they'll pay. It just sucks...
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Maryland,
You should work with your MO/cancer center -- they may be able to figure something out for you. Pfizer has other programs even for people on Medicare. I have just gone off of Ibrance, but in the latter part of the year, I applied for -- and got -- free drugs from the Ibrance patient assistance program. There are also foundations that provide some assistance if you meet the income requirements.
Please feel free to email me if you want more info about the Pfizer plan.
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maryland, please do talk with your MO or contact the specialty pharmacy that sends you your Ibrance. The cost last year was $14,000 A MONTH and I read somewhere that the cost was going up to $19K a month starting in 2021. I have not yet paid a penny out of pocket for my Ibrance. Pfizer covers the co-pay and my insurance covers the rest.
This is a crazy expensive medication, but there must (I sincerely hope) be a way for you to have this paid for by some kind of insurance.
Let us know, please how things work out. We truly care.
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Hi, Maryland,
The Pfizer Patient Assistance Program is where you need to start. Actually your oncologist should have a person assigned to finding assistance for costly drugs like this. As Sunshine said, the cost has gone up to $18-19,000 per MONTH!
I hope you've signed up for supplemental insurance to go along with your Medicare. If not, hurry and do that. I have AARP-United Healthcare for meds and Mutual of Omaha for Part B, both being recommended by a professional in the industry. I've been on Ibrance (with a few short breaks) for almost four and a half years and I've paid maybe one co-pay back in the beginning. Over time I've had an assortment of foundation grants in addition to Pfizer's program. You might consider googling "patient assistance grants for breast cancer patients" and I think you'll find several options.
[My oncology nurse/insurance expert says, whatever you do, don't sign up for one of those Medicare+ programs being advertised on TV right now, the ones with dental, transportation, meals, an extra $144 cash back and all that. She says those are only good for people who never plan to be sick!]
Back to the grants - You'll be filling out lots of paperwork but it will be worth it. Don't give up easily. I didn't keep up with all my treatment costs since I was first metastatic in 2012 but just since 2016 they've been over a half million dollars.....all covered except that one $700+!
When I typed "metastatic" my auto-correct switched it to "Metazoic" which sounds much more interesting.....I'm going with that from now on!
Wishing you the best,
Love from PatGMcMetazoic
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I’ve never had a copay either. I have an Advantage plan and Medicare. This year, the patient assistance fund that paid for my ibrance ran out of funds fast I had to sign some papers talked to Pfizer yesterday I’m good to go. This happened through my MO office for me and DH. He has extensive bone Mets. The only downside is I have to call each month to get it. That’s never happened before, but no biggie. Don’t give up, there is help available
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Thanks everyone, I'm still working on it, the problem is my husband's business is our income and it puts us over qualifying for grants. If he'd retire like I want him to I could get assistance but he says he can't retire because of my cancer which makes me feel bad. I'd rather be the reason he wants to retire. So I'm pretty pigheaded and I'd rather take $14,000 and take a wonderful vacation or rent a condo on the water than spend it on a drug that makes me feel like shit, albeit keeping me alive. I'm just in a bad place right now, I will keep trying but at this point I think I just want to stop taking it. I still have the Faslodex to suppress my hormones, I figure that's most important.
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Maryland, Medicare Part D pays for drugs like Ibrance, not a supplement. A supplement pays co-pays and deductibles for regular medicare parts A and B. In office, in hospital stuff. The $14,000 a year is correct. It is the total for the co-pays for a year. For most people, the co-pay in the first month is about $3500. (I don't have current values because I am using my stash right now.) After that, you fall through the donut hole and the co-pay will be about $950. $950 for 11 months plus $3500 for one month adds up to $14,000. (Exact values, depending on insurance and other variables, may vary.) Your MO's office should be able to assist you with this. With foundations (where you can get grants) being totally out of money right now, Pfizer has really loosened up on assistance. There are income requirements to qualify for Pfizer assistance but they are much more lenient than in the past. I've been on Ibrance for almost five years and have never paid a cent. But it takes some work on your part. That's the main problem. People with MBC have enough to do and worry about without the drug companies saddling you with more. It is worth it, though. Ibrance is the BEST drug with the BEST side effect profile that exists.
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Maryland - would taking it as a tax deduction help if other options are not available? Initially my co-pay was zero, then insurance contacted me and told me I was required to use their specialty pharmacy. Co-Pay went to $50, and is now $65. I have private, and am debating what to do with Medicare when I become elligible in a couple more years. With cancer, my medical has gone through the roof. I itemize (charitable contributions, other taxes, etc ), I can deduct a very small amount from taxes. I include all Rxs, eyeglasses, lymph pumps, long term care insurance etc. How much depends on your age, income at line X etc. One year, I even included mileage for all medical/dental/eye/imaging etc. appointments that year - seems like there were a lot, not just for cancer.
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Sondra, I just thought I'd pop in to say I've been watching street food compilation videos on YouTube lately, alot of the time London street food comes up. When I feel particularly lazy, I'll watch one and think to myself boy I had myself a good lunch. It was alittle sad tho on the flipside because of covid all that deliciousness is shuttered away now.
Had myself a hissy today. 1 of 2 events I look forward to all year has gone virtual and it's an outside event called eaglefest. No eagles or owls for me. No food trucks with really delicious food. It really bites. These little things are things I cling to and having them ripped away is like stealing my memories. If the 2nd event in May gets canceled 2 I'm just going to scream. I've really had enough of this cloistered nonsense and that's not to be rude to those who have gotten sick etc, it just feels like I'm living in a hospital with everyone masked around me and that individually I'm being robbed of thinking and deciding things for myself. Like I do for treatment for stage 4 cancer. I associate masks with surgery and chemo and hospitals. I just want everything to go back to pre February 2020. I want to see human faces and smiles again and be able to understand what the heck someone is saying to me pre muffled mask wearing era. I feel like I've grown deaf or something asking people to repeat themselves, and its flustering to the person and flustering to me. I feel like I need a remote control to function in communication with people now. Volume up button, pause, repeat. Heck no to this virtual stuff becoming the new normal. Having dinner with tv screens of your family members all around you feels not only abnormal but just odd when you think about it. Some things just aren't physically and emotionally the same virtually no matter how its gift wrapped. These are just my opinions and I know not all share them, I'm just venting a bit.
Jackie, will MO let you pause Ibrance just a bit like others suggested to give your body time to build whatever it needs to for your insides to go to war for you for a week or two? I'm hoping the supplements will help as well. I've seen several ladies in other groups stage 4 get covid and fight it off. Hoping you dont develop symptoms. I'm thinking of you and Divine. I've heard it described as a nasty flu. Take care of you and please checkin soon!
MO visit on the 5th, blood and checkin. Zometa last month. I think scans February or march, I last had then in November. Oh boy.
April, happy to see your checkin. Sometimes it feels good to pop in here and see familiar names down the list. Sometimes I just need to know your all here and remember I'm not alone.
Love to you ladies!!
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