Having been prescribed Ibrance nearly three years ago, I spoke with an Ibrance representative and asked what the price was at the time. It was $17,00, per week. I think that it was per week but my mind stopped with the $17,000. She went on to assure me that the cost to me would be so much less.
I refused the medication for ethical and moral reasons. I believe that the pharmaceutical companies should not be allowed to get away with these practices. On the other hand, I willingly take any cancer. drug that I feel is essential to my health. It seemed to me, at the time, that Ibrance was added in to any cancer cocktail wherever it could be inserted.
I am still willing to learn in my advanced years. Please add your comments and insights.
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jersey-jazz
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More: If it is so beneficial, why does it seem to be added to other drugs instead of being the one and only drug being administered to a cancer patient? When I refused Ibrance, the oncologist did not bat an eyelash.
I feel really bad for you in the states where a lot of you have to pay for your own meds. Here in Canada, luckily we get that covered. I know Pfizer gives the drugs for free to those who need help!! I have been on 100 mg of Ibrance for over 1.5 years (and Letrozole) and so far so good! Stable scans!
Interestingly, I have an excellent health care package, so really do not worry about the cost. What I am concerned about is why Ibrance arrived on the scene and became the drug of choice to be added to so many cancer drug treatments. Why?
some of the side effects of Ibrance are not what I would call minimal.
one reason I opted out of ibrance at time of mbc diagnosis in 2017, was due to the possible side effect of ILD (interstitial lung disease) which is very serious. I have sensitive lungs and did not want to take the chance of destroying them. I was more afraid of the ibrance than the cancer. my personal beliefs. and ibrance still has not been shown to increase OS vs letrozole alone. and it really bothered me that my oncologist was practically twisting my arm to take it, (does she get a kick-back??) and yet would not discuss, in any detail, the side effects of ibrance. she pretty much dismissed my worries. I wanted to discuss side effects and she did not. bottom line, I personally didn't feel that the benefits outweighed the risks. I chose to take letrozole only for these past 5 years. just explaining my experience. perhaps your experience different. but I really feel the docs should be explaining the side effects (risks) as much as they explain the benefits. I went through the same during my primary diagnosis back in 2013....no one ever told me the red devil chemo would most likely damage my heart....they passed it off as 'something to not even think about'. and yes, my perfectly healthy heart ended up with a damaged aortic valve😡. I am smarter this time around.
Yeah, I hear you. I was scrared to death about starting Ibrance as well. My best friend I told you about took it for 10 days and felt so horrible that she quit. She lasted 7 years. But I told my onc. I would only take 100 mg and that I wanted 5 days on, 2 days off. I just did it at first without even telling her! It’s my body! 🤣
I know about the lungs from the ladies on here and I pay close attention to that. Luckily it’s not too common and except from the terrible fatigue, I have no other symptoms. Some women said to enjoy this miracle drug for as long as possible because some other options are much worse. But there also have been many women saying that other drugs was so much more tolerable for them, we are all so very different.
Yes, I wondered about the kick-back once when they were trying to pressure this preventative medicine on me for my Crohn’s, when in fact, I felt I really didn’t need it as I had been fine for 15 years prior to my flare-up that was caused by divorce, selling old house, buying a new one, finding a new job, yes, that will do it! 😂 Yes, the docs don’t tell you that shit! The meds were a immune suppressant! I had no clue really! Maybe that’s why the cancer started? Who knows?
So sorry about your heart! 😱 And you were a nurse! We stand no chance 🤣 Self advocating and being proactive is indeed so important!! They think they know it all, but they certainly don’t and we need to listen to our bodies!
In Japan, when Ibrance was first introduced, they found a rather large group of Japanese women with stage iv who were given Ibrance also developed the same serious throat condition. Several (small amount but still) died. The Japanese Medical Director then suggested that Japanese oncologists should try and refrain from prescribing them Ibrance bc they seemed to have, according to their genetic testing, that a majority of them were suffering from interstitial lung disease. So this caused the market for that drug to drop in Japan. (I read that like 2-3 years ago).
Hello dear fellow warriors, I am so happy to weigh in on this topic as I am a pfizer oncology rep in both USA and the NZ… and I was lucky enough to be put on Ibrance for 18 months and it was fully funded in nz. Most of us who have benefited from Ibrance are happy that we have been given life extending therapy that is relatively easy to take…. No IV in our arms for hours and the side effects a manageable. Thst is the main reason it has become one of the first line treatments to try first for many of us.
The cost is $17k per month (not per week) but that is alot and is so difficult for the uninsured for sure. Yes pfizer is able to help those in need…. Probably Because it makes a lot of money from the insured folks. Just to shed light on why is that little pill is so costly and assure you that it is not just price gouging. The potential MBC pts who might benefit from Ibrance in the USA is a very small market. A lot of women get breast cancer but only about 1/3 progress to MBC. The cost of drug develop( scientist in discovery snd then the high cost of clinical trial) is difficult to recoup in a market less than 50k women/ men. One in 10 good potential drugs thst get put through to clinical trials actually make it through to FDA approval… and that is the crux of the high cost for us.
Drug companies in mostly the USA bear the cost of drug discovery. Countries with socialized medicine like Canada and little NZ, so very well for their citizens but I just have to point out that the conditions are nearly impossible for them to discover new drugs… snd their manufacturing of drugs is mostly limited to producing generic versions of drugs thst have previously been discovered in countries like the USA where economic conditions are more favourable to take the risk ( and reaping the rewards) of drug discovery. I’ve live in both countries and love them both. I’m very thankful to usa for taking on the risk snd giving us all hope with new drugs coming along all the time.
Thanks for your thoughts. However, my understanding is that drug companies like Pfizer are extremely profitable, doing very well on the stock market worldwide. In cases where money is made as the result of human suffering, I think we individuals are right to be suspicious. My experience in the medical community taught me that physicians are easily manipulated by drug reps who offer perks as very few doctors take the time to read research after graduation.
I can understand why you feel that way as drug companies are profitable Ofizer in particular took no govt funding in discovering and testing the CV vaccine snd is making a boat load…because stock markets invests we then benefit from drug discovery. I don’t want to live in a world where we don’t have hope of new medicines.
As a former drug rep to busy GPs, I saw first hand that the down side of drs who didn’t take the time to learn new things from drug reps (or otherwise not able to keep up) were often left in a time warp of what once was a good drug, but then improvements are made and then these busy docs, didn’t take the time to learn of new improved drugs and so didn’t offer new drugs with better efficacy and side effects profiles.
I’m sorry that you think drug companies are evil. No one begrudges Ford or Coca Cola for profits snd they aren’t doing anything useful when they “discover” a new model car or flavour of soda pop. It’s complex but I hope we csn keep in mind that the incremental improvements have added years of quality living to our lives in a few short decades. And I live in hope that soon they will find a lasting cure.
The cost of drugs is because they have to jump through hoops in order to bring it to market. I am not defending the drug companies but if they come up with something that is as effective as Ibrance than take it if you can. It doesn't change anything if you refuse on moral grounds or any other reason.
All I can say is I was on Ibrance for 5 1/2 years without progression. I am extremely thankful my onc chose to try me on it. Now I am going from drug to drug trying to find one that works. How I wish I could be back to my days on Ibrance!!
I have been on Ibrance 125 mg for almost 2 years with stable scans and am thankful for that. I also take Letrozole. When I first went on it, my husband spoke with Pfizer about the medication and found out about the cost and asked what the copay would be for us with Medicare and a supplemental insurance. They told him the copay would be covered because of the supplemental insurance, otherwise it would be over $800 a month. Although I am happy to not have to pay this, I am sad for the people who are only on Medicare and have to pay this amount. It does not seem right as I assume many who are just on Medicare are not able to afford additional insurance and now have to pay a lot of money each month for this medication. I understand that the funds are used to develop new drugs to treat cancer and other diseases, but it does bother me that this medication is so expensive.
They can talk to the an social workers at their cancer center, like I did, and they enrolled me in a pooled trust spend-down. Medicaid approved it and now Medicaid pays my Medicare B and D portion ($170 and I think $40 for rx). It is not taken out of my SSDI plus I have no copayments, no deductibles and I get free car service to and from any doctors appointments, not just cancer, although that is where I primarily Go. I was lucky that my cancer center had social workers, and a volunteer attorney who goes once a day to various cancer centers. She tells me she does about 500 pooled trusts a month.
Hello Jersey Jazz. I agree completely. When I was first offered Ibrance in 2018 I read the clinical trial studies and could not see a good reason to take it. It looked like it increased Progression Free Survival for a few months. I think the trials are still showing that it increases PFS but still does nothing to increase Overall Survival. You might want to take a look at the book by Vinay Prasad--"Malignant: How Bad Policy and Bad Evidence Harm People with Cancer." We need better drugs that will extend our lives and improve how we feel--not drugs that make us feel worse and do nothing to extend our lives. Thank you for standing up and speaking out!
The Prasad book sounds like an interesting one to read! We all want to live as long as possible, as comfortably as possible. We are restricted to whatever drugs are made available to us, and most of us simply rely on the advice of our physicians when we take meds. I doubt whether Mr. Prasad has a viable solution for our helplessness, but I will read to see what he says.
I don't think drug companies are "evil" to use Beth's term. However, greed (or selfishness) is a major problem in modern capitalist societies whether we want to acknowledge the fact or not. I don't think that makes those who operate primarily on the profit motive less than those of us who show more caring for others. However, I do think we have to work towards social control of such individuals. We may do this best by progressive taxation so that we have the resources to take care of the individuals most in need but there are no easy answers beyond education and thoughtfulness.
HI Cindy--Good to hear from you. The book is from 2020--so now a little outdated regarding specific drugs and new trials. However, his views are thought provoking. A friend mentioned hearing him on podcasts too. I have not yet read the whole book even though I've gotten it from the library twice!! This discussion will get me back to it. It is hard enough living with cancer, let alone reading about the policies too. I like to escape in novels. But we need to speak up--we are living with this! I wish there was more we could do. Best to you! Kay
Hi Cindy--Since I wrote the other post--I just read about Prasad on-line. Looks like he recently has written some very controversial advice about the pandemic protections. This might reflect on his previous works. I thought his big point was to encourage research and production of oncology treatments that are really effective. And not these "stop-gap" measures, which are so harmful to many, and do not offer much. Anyway, happy reading! Kay
I share concerns with you and Jersey Jazz. I was also offered ibrance upon mbc diagnosis in 2017. I brought my research article to show my oncologist....that ibrance did increase PFS by some months but did NOT increase OS. my oncologist basically dismissed my research....and yet it was there in black and white.
I went through all that back in 2013 at my primary BC diagnosis. I did what they said....despite the lack of information given re side effects of the IV chemo and the radiation. I am smarter this time around.
I personally did not feel that the benefits of ibrance outweighed the potential side effects. I was especially concerned about ILD (interstitial lung disease)...having very sensitive lungs. I opted for letrozole only.
I've gone back and forth about whether I should stay on Ibrance. I've been on Ibrance/letrozole/Xgeva for 5 1/2 years. Last year I had to go almost two months just on letrozole because of back surgery and had no progression. I'm aware letrozole is my heavy hitter, so I debated dropping Ibrance. I chose to stay on for now. It's not because of money - I'm in the US and I have never paid more than $40/month for Ibrance (0/month for the last year) and will be paying $100/month when I start Medicare in October - I can afford that and the new laws will protect me from any extreme increases in the cost going forward - but there's the "what if" factor. What if it really does work? Or what if it isn't doing much of anything? Do I want to put any more drugs in my body than I have to? Wish I had a crystal ball!
My understanding of Ibrance is that it extends the efficacy of estrogen blockers. I don't think you ever take Ibrance by itself, although you could take, say, letrozole by itself. The Ibrance makes the letrozole work for a longer period of time for estrogen positive tumors.
Regarding cost: I live solely on SS and 2 small pensions and don't have a chance in hell of being able to pay the co-pay on a drug that costs here in the US about $14K a month. My specialty pharmacy was able to secure private grant money to pay what Part D didn't pay. When that ran out, I went on Pfizer's assistance program,
I agree with you about these insanely high costs, but then remember Ibrance has kept me alive for almost 4 years. I can be outraged at the money-grubbing pharma companies or die. Not much of a choice for me. As long as I don't have to pay for it, I'll take big pharma any day.
Hello! Yes, it's virtually impossible to separate the creation of expensive drugs from the political implications of how it's distributed, and why it's available to some at one cost but to others at another cost. BettyBuckets is wonderful at explaining how the pharmaceutical companies charge for these drugs based on the cost of research work, etc. that goes into creating these drugs. There are countless companies who charge ridiculous amounts of money for what the pubic is willing to pay..for stuff that is nowhere near the value that a drug like IBrance provides. I'm grateful that between Medicare and my supplemental insurance, I can afford the drug...and will afford it as long as it continues to work for me.
And does it work? The scans say it does, along with the Anastrozole which I know is the key drug in this fight. What I am doing is also using information from recent trials to adjust the dosing schedule of the drug so that I can minimize the side effects it has...neutropenia.
Throughout this world there are countless forms of inequalities regarding human life...but while I recognize that terrible cost, I still can't deny myself the things that I am lucky enough to have access to...and expensive drugs are one of them. Of all the burdens we must suffer, pleases don't let guilt be one of them. 😌
Ibrance went trough expedited approval and it is approved and prescribed all over the world. It doubles survival time for other drugs. It no longer works for me, but it did for awhile, and I am grateful and proud that American medicine is able to produce drugs like that. I don’t know of anyone in US not getting it because of the cost. As others mentioned, there are ways to get a reduced price. Mine was zero. But of course, everybody have a right to select their treatment, and there are some who prefer alternative medicine or nothing at all.
Ibrance has worked well for me for the past 4.5 years. I am fortunate that I do not have to pay for it as it is funded through CareMark. I am hopeful that it will continue to help me stay NED for time to come.
What I find interesting is I am now on Xeloda and keep reading about women on it for many years--similar to Ibrance. It seems a very effective drug--and is available as a generic. It got me to wondering if everyone jumped on the new kid in town bandwagon w the CDK 4/6 drugs...? Not to say they aren't game changers, but I do find it interesting how doctors make their decisions as to what to start us off with. Would love to hear from BettyBuckets and others on this,,,
interesting. well I wonder if different cancer centers align with different drug companies. cut a deal with them, so to speak, and get a kick-back from the drug companies for using their 'product'. where I go, they push ibrance like crazy. but not kisquali and not verzenio....why?? my onc told me they only prescribe ibrance, as first line, but could/would not explain why.
ibrance came out in 2015. kisquali and verzenio not until 2017. so ibrance had 2 years to 'corner the market' and make deals with the cancer centers??? just my guess. I have no definite knowledge of this and zero proof....just speculation that makes sense to me.
I hear more and more good things about Xeloda recently. in the end, what works the best for increasing OS will be the frontrunner?
personally, I opted out of ibrance for many of the reasons already stated. I've been on Letrozole only for 5 years now.
My dr also prescribed Ibrance for me. I had been getting along amazingly well. Feeling good, Pretty upbeat for stage IV MBC hur 2. nu. Whatever that meant...
On Ibrance, my hair started falling out very fast. One day at my friends house for a brunch, I got a very nauseous. I took a Zofran and left to go home. I had a 40 minute drive. I had to stop three times on the side of the road to throw up. It just wouldn't stop. I thought I must've eaten something that disagreed with me. I was sick for two weeks. Taking Zofran two and three times every day. I started feeling sad, and depressed, constantly sick. Weepy and not knowing what had changed.
My dr called to say my liver enzymes were extremely elevated and to stop the Ibrance. I was so sick and sad and depressed at this point, without knowing why the sudden change in my overall outlook and feelings. As soon as she said that I knew that was what was wrong. I was instantly relieved and immediately began to feel better. the nausea went away, as did the sadness and depression. (I had never been depressed in my entire life, before then)
Within two days I was back to my usual self.
Now the drs want me to take it again. I said NO! They are kind of badgering me to at least try it. I still say NO!
Why would I take a medication that makes me feel like killing myself, when I feel like a whole human with out it??? I refuse to be sick from a medication. It's enough to have cancer, but I was not sick, sad or depressed before. So no, I will not "try it again"... not even at half dose.
My tumor markers are normal, I still take the Phesgo shot, but nothing else.
I'm taking some holistic properties now and feeling good again. Living my life.
I often wondered just what that "special" prescription was costing me. To me, the price of my health and well being was already too high to pay. Reading your post on the financial cost just cements my decision. Thank you so much for sharing this information.
btw... just to be clear; I would not actually consider taking my own life, but I did pray fervently for the LORD to take me. I had never experienced feelings like I was feeling at that time. Just. So. SICK. No point to living. I had never felt to horrible in my life. I was never a sick person. I didn't know how to be sick. I had never even had the flu. Abject Misery was the dominant factor of my being during those weeks.
In the beginning I had eight triple chemo infusions via spinal tap. Not once did those make me sick, sad, or depressed. I had 29 radiation treatments. This all just made me very tired a lot, but not sick, sad, or depressed. I didn't even lose my hair till the Ibrance.
The cancer had metastasized to my cerebral spinal fluid and bones in my spine. That was my first diagnosis. Then lots of biopsies and testing to find where it started as dr said the Lepto Menegeal did not just start on it's own. Discovered it began as breast cancer. Now stage IV.
I choose to believe that the LORD has healed the cancer. I will continue the Phesgo to keep it from returning. But no to Ibrance. Or any other pharmaceutical medication.
I am taking a 7 mushroom complex for immunity and to kill cancer cells. I take calcium, vit C, Milk thistle, and several other supplements. No. More. Drugs.
Thanks again, so much for sharing.
May God bless you and keep you. May His face shine upon you ♥
It could have been the estrogen blockers that caused the depression--maybe switching that would help? I was certifiable on Tamoxifen when I took it a decade ago as a stage one patient. The doctors ignored my complaints until my current oncologist said up to 10% of women get clinical depression on Tamoxifen. So maybe try Ibrance--or one of the other CDK 4/6 drugs, just with a different AI?
I'd not heard of Phesgo before so googled it. This iswhat I learned: "The most common side effects of PHESGO when given with chemotherapy as part of an early breast cancer regimen are: Hair Loss. Nausea. Diarrhea. Hair loss. Low levels of white blood cells with or without fever. Nausea. Feeling tired. Rash. Damage to the nerves (numbness, tingling, pain in hands/feet)".
It seems to me that you are very fortunate in being able to tolerate it without side effects! I hope you continue to do so well on it.
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