Opening a small can of worms, regarding Ibrance advertising...

exbrnxgrl

I know there will be a certain amount of blowback on this topic and there is a part of me that thinks I am a fool for even starting this topic but here goes.

Some people have been upset over the Ibrance ads/commercials that show stage IV women happy and going about their lives while on Ibrance. I realize that these women represent the minority of stage IV women, in terms of looking well and carrying on fairly normally, but, they do represent some of us. I am not on Ibrance, but I can identify with those women. Their lives look like mine. I can relate to them.

So, although this is not the way most stage IV women live, it is not untrue for some of us. It would be impossible for a commercial to represent every "flavor" of stage IV or to put in a disclaimer so people understand that this is not typical of stage IV, but for some, it is a reality. It's a reality which, I hope, touches more and more of us and a reality which may give hope to others, but within the stage IV community there seems to be some negativity about advertising the fact that some of us are doing well.

There is no doubt or illusion that these commercials don't represent the majority of stage IV women and things could turn on a dime for those of us who are doing well but I sometimes feel that as a stage IV minority that I'm not considered a legit part of of things and I need to hide my truth and experience with stage IV bc. I do have MBC and I feel like my experience of living with it for almost 7 years is just as much a part of the MBC community as anyone else's and doesn't detract or distract from those who are having a rough time.

I'm ready for the push back, but I don't want to have to apologize for doing well.

ABeautifulSunset

i didn’t mind the commercial. I was so happy to see a commercial that even addressed metastatic breast cancer as a thing. Also, commercials about ANY kind of disease or ailment always show people at their best and happy. That’s called advertising. It’s not meant to be an educational video showing the world the realities of metastic cancer. But, as far as commercials go, I was really happy to see it. So, no blow back from me.

Sunset

Becs511

There is no need to apologize! You are just as entitled to express your feelings, emotions or vent as the rest of us! I just had a double craneonmoty on Tuesday and love to hear stories about women like you who are thriving years past their diagnosis. I will hit my 4 year mark next month!

I personally take it for what it is, a commercial trying to sell a product now that it has a competitor. I know, no matter what a TV ad, drug or otherwise, is trying to sell me, nothing magically is going to happen. For example, I never once opened a Pepsi and was suddenly at a Britney Spears concert!

The only thing I find irksome, especially as a younger stage 4 woman, is both commercials feature more “mature" women. They could have used her “support group meeting"as an opportunity to show a broader patient range: younger, male, bald from other drugs, sicklier, etc.

bigbhome

Nor should you apologize! I think that its great that you are doing well! Seven years is awesome! I am at six!

I have some very good days, like Julie, but I would say that Alice is more my normal. However, there are a few days that I can barely function. I hate those days. I'm not going to say that I don't hate cancer, because I do! I don't need to say it everyday, I don't need to focus on that everyday. I want to focus on the good things in my life! I have two adorable grandsons! I have two sweet horses and two cute dogs! I also have my Dh, who I love! We have had a lot of bad things happen lately, but we are plowing through them.

I would like to see the "there is life after stage IV, really" thread get going again with all of the positives we have going on.

That's my two cents worth!

Claudia

exbrnxgrl

Thanks all. I think sunset made a good point by saying that it is advertising, not an educational video. I may be a bit sensitive since I have, on a few occasions in both public posts as well as pm's, been been admonished by some on bco for speaking up about how little life has changed for me. I am grateful, and I know I am lucky, but this is my reality at stage IV and I refuse to feel bad about it. Believe me, if I knew why I've done well, I would gladly share it. I think i am done apologizing for doing well, but I want to be prepared for any possible fall out.

Becs, since Ibrance is taken with an AI, I t^{hink their target audience is post-menopausal women, although we know that ovarian suppression or hysterectomy/oophorectomy are sometimes done to allow pre-menopausal women to take AI's. Just a thought as to why younger women were not shown.}

^{I really appreciate all of your responses.}

LoriCA

Since I'm pretty sure this was prompted by a recent conversation in the Steam Room, I'm sorry the discussion made you feel like you are supposed to keep it to yourself that you are doing well exbrnxgirl. Stories like yours give hope and motivation to people like me and you should talk about it. Yes I curse at Julie and Alice every time I see those commercials, but only because IBC hit me hard and fast and it's been a long uphill struggle just to get back on my feet. I do know that my situation isn't typical (and I know that many others have it even worse than I do). I still have so many days when I wonder if where I am now is the best I can hope for before I die. It does help to know that there are people who are managing MBC well, it motivates me to keep going to get over this hump. But I'm probably still going to curse at Julie and Alice until I'm one of them hahaha!

illimae

I’m Julie too. I downplay it a bit here because so many have fatigue and pain. Grateful for every normal dayand hopeful for many more.

Becs511

Many of the younger women I know with stage 4, including myself are now post-menopausal as a result of the diagnosis. I had an ooph at 35, at the same time that both my SIL and College roommate were preggo.

It still feels like a punch in the uterus whenever I hear of another friend's impending new baby, or when somebody asks me for a tampoon in a public place, or I hear people complaining about PMS or period cramps! That is what our bodies are supposed to be doing at 36 and 37!! Not going through surgically induced menopause

exbrnxgrl

Becs, I'm so sorry that you find yourself in this situation at such a young age. It's certainly not where anyone envisions themselves in their 30's. Young women with mbc are often an unrecognized minority.

LoriCA, what inspired this thread was actually a thread on a knitting forum I belong to. I believe it was "Alice" who appears to be the proprietor of a yarn store. Knitters sit up and pay attention when we see anything in the media about knitting. The funny thing is that on my knitting forum, many objected to the commercial because they felt that no one, NO ONE, could have mbc and be happy or have a job or any sense of normalcy for that matter. The comments were filled with things like, poor woman, so sad, she is to be pitied, so wrong to show cancer patients that way etc. When I commented that some, but not many, with mbc do have lives like this there was quite a bit of disbelief. One woman asked if, perhaps, I did not understand my dx because no one with mbc lives like that. Umpteen PET scans and bone biopsies have made sure that I understand my dx all too well. I still don't think she believes me! Another commented that I could not have mbc because I was not on IV chemo. I wish!

Dianarose

I personally hate the commercials! I want to watch tv without a reminder that I’m stage IV! The money is wasted on a product that all oncologist know about or should! The millions of dollars being wasted on their dam commercials could go to Research for better drugs or cure. Maybe even lower the cost of Ibrance. No one sees that commercial and calls their doctor. They already know. It’s always about money. Well, this is just my opinion.

exbrnxgrl

Dianarose,

Although it is good to see women who have mbc who are like me, I actually dislike all commercials for prescription drugs. I can't even figure out what illness some of them are trying to improve/cure. Most end with the statement "Ask your doctor if XYZ is right for you." I imagine all kinds of amusing conversations when someone asks their doctor about a drug they've seen advertised that has nothing to do with them at all! Yes, advertising is about increasing sales and thus profits for the company. Public service is not their main motivation.

illimae

exbrnxgrl, lol that you might not understand your diagnosis, I find that hilarious

exbrnxgrl

illimae,

Yes, given the type of person I am, an educator who is committed to critical thinking and making informed choices, it is pretty laughable. However, I probably don't have to tell you that there are a lot of people who think they know about cancer, and all sorts of things, that they actually don't!

ABeautifulSunset

Wow, Caryn. I hope you gave those ladies a what for. Who the heck do they think they are to even have an opinion on the matter. Ooh I’m so mad I want to come to your knitting group and make trouble. 😏

Sunset

ShetlandPony

I have suffered discrimination, been denied opportunities, by people who think I would be too ill or weak to do what I and my doctor know I can do. These naysayers they think they know, but they don't.Yes, I do get tired, and have some drug side effects, but sheesh people, don't write me off yet. Let me do the things I want to do while I can and don't dismiss me.

exbrnxgrl

LOL! The administrators/moderators of my knitting forum seem to have flown the coop in the past few months. As on bco, there are many threads that are not knitting/crocheting related, and they have gotten very contentious and ugly without any moderation. We already have lots of trouble on that forum.!

There will always be people who think they know it all, but as we know, having bc, especially stage IV is pretty widely misunderstood.

terri-c

When my sister first saw the commercial for Ibrance she grabbed the phone and called me. She wanted to tell me about the drug she had just seen and was hoping I could try it because the lady in the commercial appears to be doing so well.

I had to explain to my sister that it is advertising, that the person in the commercial likely doesn't have MBC, and that Ibrance, like all of the treatment drugs have side effects that affect different people in different ways.

I'm almost 4 years in on Faslodex, and while nothing has shrunk, nothing has grown either. Ibrance will be the next option though, when the Faslodex stops working, or when my body can't take it anymore (I struggle with the side effects).

Sadiesservant

Interesting discussion. The problem I have with Julie is that it doesn’t represent the reality of the treatment. I’ve been on Ibrance and the fatigue is something else. Ultimately it knocked the crap out of my red blood cells and hemoglobin in a very short time. While I had to stop taking it, my experience with the bone crushing fatigue was far from unique.

You should never apologize for doing well. But in my time on BCO I have seen, on a number of occasions, that folks have been “shut down” when they stray into darker discussions on some of the threads. Sadly, you are the exception rather than the rule and so many are struggling to carry on under the weight of side effects and progression. I hope that we can all be open and honest about our experiences without censure.

Hugs to all.

exbrnxgrl

terri,

That was so sweet of your sister. My dad once sent me an article about a drug that could prolong the life of those with metastatic disease. Turns out it was for prostate cancer! I had a difficult convincing him that all cancer is not the same. He was sure that if it worked for prostate cancer it would work for any cancer. It is hard, even for our loved ones, to understand not only the fact that all cancers are not the same, but that in the world of any given cancer, there may be many different types that respond differently to different treatments. Actually, it's mind boggling when you think about it.

Yes, I think the women on the Ibrance commercials are probably actors, but if you saw me you would never imagine I had cancer, let alone mbc. How we look doesn't always tell the whole story.

ABeautifulSunset

I read somewhere that one of the women in the commercial has MBC. (Where did I see that?) She may also be an actress. The others do not have it and are just actors

50sgirl

Exbrnxgrl,

I, like you, feel good and look like a healthy person. Most of my friends and acquaintances are unaware of the fact that I have mbc. Those who do know have learned a lot from me about the disease. They are still amazed that I look so healthy three years into MBC. Faslodex and Ibrance are the combo of my second line of treatment, and I have been taking it for 21 months. My blood counts dropped so low during the first cycle that my dose was reduced. The counts still drop each cycle. Anemia is my constant state. My platelets are always low. Still, I am lucky to be like Julie or Alice, but like Mae, I don't mention it often on the boards. It feels like no one wants to hear that. (I like to hear that other people feel good. I LOVE to hear when people receive the news that they are NED or NEAD. it gives me hope.)

Although my SEs are minimal, I do know what it's like to have progression. I do know how it feels to wonder about the future. I experience that same stress as everyone else when it's time for scans. I worry when my TMs continue to rise. I research new and old treatments alike to try to prepare myself for whatever treatment will be my next. I wonder how long I will feel this good.

The Ibrance (and now verzenio) commercials don't bother me any more than any other commercials for prescription medications. It is impossible to represent every one of us in the ads. They generalize. I have met several others who are on Ibrance and still feel good, so I know I am not unique, just lucky. I believe that the widespread perception of a cancer patient, especially one with metastatic disease, is someone who looks frail, malnourished, bald, and is bed-ridden, in severe pain, and close to death. Many of us are far from that. How is it possible to show the true picture? Frankly, if I watched the commercial without any real knowledge of cancer meds, I would not want to touch Ibrance after hearing the SEs and warnings voiced in quick succession. There is something about hearing all those serious and potentially fatal things that could happen - I would stay clear of it.

I am sorry that some people make you feel uncomfortable or out of place here just because you are doing well. I think it is safe to say that we all want to be like you. Well, actually we would like to do you one better and get rid of MBC once and for all.

Abeautifulsunset, I heard that one of the women in the verzenio commercial has MBC. I don't know if that is true.

Tina2

When viewing bright-and-breezy pharmaceutical advertising for promising new cancer drugs, always keep in mind that there is a less obvious but doubtless larger target market than patients for those hopeful messages:

Investors!

Tina

exbrnxgrl

Tina,

So true!

jensgotthis

I get annoyed at Julie and Alice because they are depicted not living with much independence. Especially Julie. I too feel pretty darn good. I get tired out, but I also work full time and am a single mom. I feel very grateful to be at this point right now and will continue traveling and being as active as I feel that I can. Definitely don’t apologize for feeling well. It gives people hope.

Iwrite

Pfizer has an ambassador program where real patients speak to groups and share their experiences. My guess is that those in the commercials could be ambassadors.

I have also felt decent on Ibrance for 30 months and am grateful. It would take a LOT of makeup and creative camera work to make me look that good. Maybe the free makeover was a good reason to be in the commercial.

If it gives people hope I’m okay with it,but There is no way someone can know all about these drugs in a :30 TV ad. I don’t watch TV to learn how to be a pro at anything, and I don’t watch commercials to learn how to treat cancer. Ok...I do watch HGTV to learn how to fix up my house, but for some reason they can finish the whole project in an hour???

DivineMrsM

Great topic, Caryn. Great comments from everyone, too.

I sit with the remote and press mute during most commercials, although I have listened a few times to the Ibrance one. 50s girl, you cracked me up saying without knowledge about cancer, the commercial could have led you to avoid Ibrance after listing its side affects! Dh and I hate all the prescription medicine commercials because of those lists that drone on.

Like you, Caryn, some of my acquaintances think I should be hooked up to an iv, look ill and bald. That's because Hollywood has milked the cancer storyline dramatizing it to the nth degree. That's where some people get their concept of how they think the illness should present. The person who thinks maybe you are confused about your diagnosis...actually that irritates me! Reminds me of the disability doctor I was assigned to see who said he thought I probably had arthritis or stage 2 bc since I had been stable without progression well beyond the 3 to 5 year life span women have with mbc.

So I'm glad the Ibrance commercial addresses that it is possible that some women can live somewhat normal lives when dealing with mbc. Hopefully it helps educates people.

I agree with Sunset, this is how advertising operates. Think of all those brand new car commercials of people driving beautiful country roads past lakes and crystal clear streams. I drive my new car past the muddy Ohio River heading home, turn down our narrow alley with speed bumps, passing garages and trash cans and laugh. They don't show that kind of background on those commercials! Most of the time, you are stuck in traffic or swerving pot holes no matter how new and shiny your vehicle is!

JFL

"One woman asked if, perhaps, I did not understand my dx because no one with mbc lives like that." Caryn, wow, that gets me so fired up! How insulting and ignorant. People are beyond ridiculous sometimes.

NancyHB

And not all MBC is the same - Ibrance won't work for me with TN. But that hasn’t stopped several friends who've seen the ads encourage me - one quite insistently - to pursue it as a treatment option. NOW. I try to explain that I have small rib and sternum mets and only recently had some progression, but no significant impact on my QOL so I'm choosing not to jump into chemo at this moment. Which, I'm fairly certain, leads several friends to disbelieve my diagnosis because i'm not hooked up to an IV and bald and sick like I was when diagnosed the first (and second) time. I find myself feeling a weird guilt for feeling so good right now, knowing it won't last long. One friend actually said I made MBC “look good." It's....mind-blowing sometimes.

Beatmon

There is a newer commercial for one of our Stage 4 drug ( the name escapes me) that I like because it states Stage 4 is Relentless !

Dianarose

I had one person actually say that stage IV must agree with me because I look good. What an idiot

Larkin

This is an interesting thread. I’m one that has kept my cancer mostly private for over 20 months. To those that don’t know, I look fine. The reality is my blood work isn’t always fine and I’m definitely lower energy than I use to be.

One day I was at the cancer center and the nurse navigator was talking to me. I was bragging about how well I’m doing and she said to me, “That will change.” It felt as if she had punched me in the gut. I know barring a cure, she is right but damn I like my Ibrance commercial style life right now.

That is the reality of our disease though, it will progress. For most of us, within three years, maybe five. Yes, there are those that live well for years but we can’t expect that to last forever. It’s frustrating when commercials present MBC as some simple disease like high cholesterol where one can take a pill and go on their merry way. Sure, maybe for a time, but not endlessly.

Here’s to all of us living well and doing well for as long as possible and here’s to our daughters and granddaughters having a real and true cure someday. Those us us afflicted now can only hope for more time of living well