I’ll be starting Ibrance in 2 weeks and I’ve read some instances where the tumor has gotten smaller. I’m wondering if anyone has improved enough to go off the Ibrance? I’m on Letrozole now and imagine I’ll be on that the rest of my life but so far no problems with it. Just curious if Ibrance will be lifelong. My copay will be rather high too on Ibrance so another reason I’m wondering! Thanks for any info ladies!
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Starting Ibrance soon
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Ilovehorses
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I was on Ibrance some tumours disappeared and the other ones got smaller, had no side effects, unfortunately I had progression after 18 months, but other ladies have been on it for years and working well
Thanks for the info! It’s good to know that you had no side effects from it at least. Hopefully something else will help put a stop to your progression Take care❤️
Thanks I'm confident xeloda will kick cancers butt
Hi, IBRANCE is also for as long as one live, unless it doesn’t work anymore. I am on IBRANCE since December 2018 and so far it is working. I also pay a lot of copay almost around 11k per year. I think god taxing us for livings!
Ouch!! And I thought my copay was high! It seems so unfair doesn’t it? Hit with this and also hit financially. I guess we all have realized by now that life isn’t always fair. Thanks for the info, I do hope the Ibrance continues to work for you. Hugs and take care!❤️
To those who have high copays: please check with your doctor and see if they can get you on a payment assistance plan. My oncologist at the Univ of Michigan has done this for me and I have never paid one penny for copay. The best to you and all the other wonderful ladies on this forum,,—Madlyn
I too, well for my wife, have never had to pay a copay. She has been on Ibrance since December 2020. In March 2021 she had her first scans after starting. Her breast tumor and lymph nodes were completely gone and her bone mets had improved (interval resolution). Her cancer marker was 113 in December. Down to 51 last month.
I’m sorry to hear that you have to pay $11,000 per year. I can only assume you live in the USA where medication is expensive if you don’t have insurance? Is there any way you could start a “go fund me “? I know that probably sounds cheesy but you are having a hard time as it is without paying so much money. Best regards Claire
Hi Ilovehorses...I credit Ibrance with adding years to my life. Paired with Letrozole for about 40 months, now Faslodex for almost two years (and counting). My tumors did get smaller, which was great (!), but it was because of the meds, so it never crossed my mind to give them up.
Re: the copay, if you go to Pfizer's website, and you're in the US and on private/company insurance, they pretty much cover the co-pay via a coupon. Look for "financial assistance" on the site. This is actually a huge benefit, since I make sure to not do any doc visits, labs, etc. until I've used the coupon for Ibrance so that my co-pay is met with the Ibrance coupon. I might not be explaining this well, but in effect, I have zero dollars in medical expenses each year (private/company insurance).
Good luck with it!
Lynn
Ilovehorses• in reply to
Thanks for the info Lynn! I will definitely check out the Pfizer site and see about those coupons. Good to hear it’s working for you. That’s very encouraging too. All the best!!❤️
yes the coupon pays my deductible of $200 and insurance pays the $11k
Yes, i have been using the coupon option for 8 months now and it has worked for me without issue.
Cenaiba• in reply to
Hi,
Can you elaborate on what Pfizer covers for you, please. Do they cover CT scans, labs. aso?
• in reply toCenaiba
Hi Cenaiba -
Pfizer, the company that sells Ibrance, covers the co-pay on that drug for people who have private (non-government -- e.g. no medicare, medicaid, military) insurance. So, for example, my out of pocket max is $6,250. I make sure that my first expenditure each year is to renew my prescription and then I call the pharmacy with my coupon (printed off the Pfizer website) in hand. When they tell me my co-pay is $6,250, I give them the code off the coupon and my co-pay becomes $0. This way, I've met my annual out of pocket max and any subsequent treatment, labs, scans, etc., cost me $0.
So they don't cover these other expenses, but by being a bit strategic with the coupon, you can avoid these other expenses.
BTW, each December I try to remind the group here to get their coupon for January and this past year a number of members here said that their insurance no longer allowed them to use the coupon. I had AETNA, but they merged with CVS and now CVS will be providing my Ibrance. I'm hoping that CVS will also accept the coupon in January...
I hope that helps..
Lynn
Cenaiba• in reply to
Hi,
That makes sense. At this point in time it would not work for me, because my insurance is covering Ibrance completely, however I will keep that in mind for the future.
Thank you for answering.
Rux
• in reply to
Lyn what dosage of ibrance are you presently taking ?
Luann
• in reply to
Hi Luann - I take 125 (for more than five years now...).
• in reply to
That is amazing . Do you have any fatigue with it ?
• in reply to
Yes, I do have a lot less physical energy than I used to, for sure. It used to get on my nerves, but I've sort of scaled back and accept my limitations... 
• in reply to
A strong and smart lady
My one tumor under my arm went away with Ibrance and by my second scan I was NED, but by the 3rd scan there was some activity but not enough to change . So I’ve been on the Ibrance for a little over two years, first with Letrozole and then with Faslodex. At this point my scans haven’t looked bad but my markers are creeping up rapidly so I will probably change medications this next month. There is never a time when you are cured and you can go off your medication. The cancer will and does find a way around it if you are on it. If you go off, it will just show up somewhere that much faster. Sorry, I know this is bad news.
Talk to your oncology office about options...grants, copay cards, insurance that you might transfer to that would cost you less in the long run. If they don’t have someone on staff that specializes in helping get the cost covered, they probably should know where to find that kind of help.
Hugs, Elaine
Thanks for the info Elaine. Yes someone told me years ago when I was first diagnosed that you must never expect to be cured as those cancer cells are always waiting for an opportunity to grow again. In my case I believe it was the extreme stress I’ve been having at work that gave them their chance. I can’t really afford to retire for a few more years but am trying to do what I can to deal with stress. Course that’s been even worse with this new diagnosis! Catch 22 for sure! This group has been great to be part of and I love the information and advice, whether it’s what I want to hear or not, it’s better to go into things with knowledge than fantasies. Hugs to you and I hope new medication will slow that upward progression Take care!❤️
• in reply toRed71
Hi Elaine...I'm sorry to read about your tumor markers rising/likely need to change soon. I'm in the exact same situation and feel compelled to mention that my markers and alkaline phosphatase (sp? indicator of bone destruction) have now decreased significantly 1-2 months in a row after about four months of real increases. The only thing I -- and my doctor -- can attribute this to is starting some real exercise and possibly finally beginning to take D3. I have labs again tomorrow, so we'll see if the trend is holding, but I did find this encouraging. I know that exercise is challenging, especially for those of us with pain, etc., so I don't mean to toss this out as something easy. But I'd feel remiss if I did not at least mention it, in case it's an option for you.
Take care,
Lynn
Red71• in reply to
Thanks for the tip! I am trying to push my way through the exhaustion I have been dealing with to be more active this past month so we shall see if that makes a difference with my markers. I’ve had more time with the grandkids which certainly helps increase the energy output. I sat on the floor with the 5 year old to play Legos the other day and realized I hadn’t used the old hip muscles in a while...creak, creak!
Are you taking time off work for your radiation treatments? You said that work is an extreme stressor, so I would really worry about those treatments on top of your work stress. I had 10 treatments to my T10-12 area and while I felt good for the first 3 or 4 treatments, the remainder left me with extreme exhaustion. I know others have had different reactions.
I don’t know how much you depend on your work for benefits and income but I have read here that you are immediately eligible to be on disability with a cancer diagnosis. There are others who can chime in with that info, I’m sure. But if work is already stressing you, this diagnosis will add to that stress.
I’m retired and living well off my husband’s federal insurance plus Medicare so my issues are not at all like yours but there are many other women in this group that can give you some advice based on their experience. That’s one of the nicest things about this group, we are so diverse, that there is always someone! And everyone is so helpful and NICE! I wouldn’t have done quite so well without knowing they are all out there, especially during the dark times of the night!
Hugs to you. Elaine
I was told by someone at the Social Security office that I can apply for SS disability as I can’t work due to cancer and treatments. A lot of documentation needed but it is worth it.
If you are stage iv, it is an automatic approval, but with SSDI, the first five months are UNPAID. (I have no reason why but that is the way it works.) I was lucky enough to have a nurse navigator at my cancer center just have me sign some papers and she took care of all the rest. I waited a long time and went through my savings before even applying bc I was so confused and had been diagnosed and had no idea if I were coming and going so by the time (I switched hospitals) the nurse navigator did it, it was over a year and a half. I knew nothing about how it worked but the SSDI moved back my EOD (effective date of disability). They did not use (which I expected) the date the nurse navigator filled out the forms but they went by the very first date close to two years earlier (or a bit less) and even after deducting the first five months as unpaid, they gave me back pay of $25,000 which I was NOT expecting and for which I was grateful bc I had used every penny I had. Even though I tried working at two jobs (one for three months and one for two months) I could not do it so I assumed SSDI would consider it after that but they considered those two jobs as "failed attempts" that I did try to work but could not. IF I had stayed at one of those jobs for six months, then SSDI would have moved back my effective date, till the date after the six month job ended. Hopefully, you have a social worker or someone like that at your cancer center. I was so grateful that she took care of everything. We have enough stress without worrying about applying for that. SSDI is usually very hard to get but stage iv is automatic but like I said, depending on what they consider your EOD, the first five months are unpaid so use the very first date you were diagnosed.
Actually since I’m on salary I go every day from work for my radiation treatments and then return when finished so no time off for them. I’ve had 7 so far and no side effects at all other than the typical sunburn Only 3 more to go!
I’m single so totally self supporting. I’m a postmaster and when COVID-19 hit, the rest of the world was in down time but it was all we could do to keep our heads above water with the huge influx of parcels. Being short staffed and having my supervisor off for 8 weeks paternity leave made it 10 times worse I had to be out there delivering mail and parcels as well as doing my own job. It’s no wonder cancer saw it’s opportunity!
I could retire now but it would be living from check to check and that was before I started all the medical stuff. As of now I’m totally fit to work so would not want to go on disability as that would be wrong.
I do appreciate the information though and somehow we will all get through this together!
• in reply toIlovehorses
Hi Ilovehorses,
I really admire your spirit! I reminds me of myself when I was first dx, 10.5 years ago, stage IIb/IIIa. I continued to work like a fiend...actually harder then ever, since I needed to prove that cancer would not slow me down (corporate gig, most ppl supportive, a few looking for an opp'y to get my job). I do think that the sense of defiance helped me a lot. Although I did ultimately end up completely depleted, after chemo, rads, six (?) surgeries, yet I persisted! . I went on disability after my metastatic diagnosis, 5.5. years ago, because I was 53, close to retirement anyway, but am still proud of how I held up initially. Hats off to you! p.s. I love that you're a postmaster! What a cool and important job!
Ilovehorses• in reply to
Awe thanks Lynn!
I now live basically from check to check now that I am on SSDI but I am saving so much money also. (Well, not now with the pandemic), but it cost me $150 in MTA bus fare (I worked in NYC), lunches, clothes bc I worked at a law firm. Now that I am on SSDI, I get a half fare card for the bus/train and I don't have to buy work clothes, and I eat at home so my needs are not that great and living in NY there are always free concerts and plays or something going on. So I have learned to live on alot less.
That’s cool that you have so many opportunities to do things in NYC! I live in a very rural area so not much going on here! Lol. But I keep busy with maintaining my own home and taking care of the horses. Life is what you make it! Take care!
I would rather have a horse LOL.....At this point my life, I would prefer a nice rural area, but (1) I do not drive so that would be a problem bc most stores are not close and (2) I am stuck living in NY (although we have some nice areas upstate) to keep my full Medicaid on top of having Medicare (Dual coverage). I do not pay a penny for anything, I can pick and choose what specialists I want to see and easily switch or get a second opinion (no prior approval). The best thing about full Medicaid is that they provide me with free private car transportation to and from any kind of doctor appointments, even the dentist. This is a big deal for me bc I live in Brooklyn, have no family nor any friends that even live in Brooklyn anymore so the free private car service for me is something I absolutely need and am grateful for.
Medicare is federal, Medicaid is state so I am stuck in NY bc if I move out of state, I would lose my full Medicaid. Right now though because of the pandemic, all the theaters are closed still and you can't eat inside of restaurants, they can only do outdoors so NY right now is still quiet bc of the pandemic. I read where many people are now moving to the suburbs because it is much cheaper and a nicer quality of life and since so many people are still working from home, they are choosing to leave the City. Now LLs are offering all these incentives to rent bc of the pandemic but with so many people unemployed, nobody is moving or can afford to move.
I see several ladies asking how to get financial assistance if you are on IBrance. Here is the Pfizer site that explains it:
pfizeroncologytogether.com/...
❤️🙏❤️
I have been on Ibrance since June 2019. When I started I was coughing constantly and within two weeks after going on Ibrance my cough went away. I have had one tumor on sternum which has reduced and no new progression on my
Other spots. I have never paid one penny for my
Ibrance. My doctor got me on an assistance program. I am so thankful. I have been told I will stay on Ibrance until it stops working. My doctor says there are several other therapies they can try should this happen. My best to you . Madlyn
Thanks Madlyn! I love the info I’m getting from you all that Ibrance seems to do a good job but when it no longer works there are other options. Maybe some quality of life left for at least several years from the sounds of it. That’s encouraging! Good luck with your treatments!
Hello! I have been on Ibrance 125mg /Letrozole for more than 2 1/2 years and will shortly be starting my 35th cycle . I have tolerated it well and have been stable for more than 2 years , however my onc still wants me to stay on this protocol (even during the Covid pandemic), and I will stay on it until it no longer works , and then my onc will advise on other treatments . I am fortunate not to have to think about the cost of Ibrance , as I am in the U.K. and covered by the N.H.S. Good luck with this protocol and I hope you can get help with costs too .x
Good info! Over two years and something else can be taken when it no longer works. That sounds great! And you are indeed lucky with the NHS!! We went to England 4 years ago and Scotland last year and absolutely loved them both!! Hope to go back one day!
Gosh.
Reading all this.... I have realised how lucky we are in Australia.
When I first got my diagnosis, my daughter was on phone to SS for a disability pension for me straight away. No way would I be able to work as mobile hairdresser any longer.
I got the pension. And in Australia, ibrance had just been put on our national health scheme. So I never pay any more that $6.40 Aus $ for any meds.
And just so you know Ilovehorses, I've also been on Ibrance, Letrozole and denocumab injections for 27 months.
Although I had to come off letrazole and change to a close cousin (not a 2nd line) called anastrozole. As Letrazole was causing me to have carpal tunnel and trigger thumbs in both hands.
I think I was also putting on weight when I was in Letrazole. I have list done weight since coming off it. But it's Al still working so far.
Love to all.
Chris
You are fortunate for not having to pay much!! I started on anastrozole and it made me feel exhausted and my feet hurt! I’ve been on the letrozole for almost a month now and feel great! In fact I’ve lost some weight! Funny how things affect us all differently. Thanks for the info! Take care!
Ha Ha. Yes. Very strange. A good reason never to generalise!
Hi, I’ve been on Ibrance since January this year and my scan has shown huge improvement and almost no sign of activity. So like everyone has said I’ll be taking it until it stops working. I’m in Scotland so very lucky to have NHS. My onc said that next stage would usually be very mild chemo but I suppose that will depend on what is available when Ibrance stops working. Good luck!
I was only on Ibrance for three months. I am now on Verzenio and prefer it way better than Ibrance for me. But I could not handle the higher doses of Verzenio 150 mgs. or 100 mgs. and that is taken twice a day with no breaks. I went down to 50 mg. twice per day and I no longer have to nap as much and I feel so much better than I did with the Ibrance. My week off was hell. I felt like I was dying. I didnt' know and my onco did not offer that I could go on a lower dose.
We are all learning so much from each other!! Knowledge is power!!
Thanks for the input! I hope it works as well for me. I’ve always been against using prescription drugs if at all possible and going the holistic way so this is a scary thing for me. Hearing how well so many are doing sure helps alleviate some of that fear Hope it continues to do well for you!! Take care!
Hi, I’m on Ibrance and Letrozole. I’ve been taking it for 18months now. I do get tired when I go back on the Ibrance after a weeks break but it soon passes.
I’ve had some hair thinning but strangers wouldn’t know.
My Cancer is stable in my bones. It has shrunk slightly in my lungs and lymph nodes. Which to me is all good news.
Hope this helps.
Best wishes.
Cheryl
Ilovehorses• in reply to
Yes it does help knowing that many people do not have serious debilitating side effects!! I have my appointment on Thursday to get started on Ibrance. I plan on waiting till I’m back from a short vacation to visit my daughter in Georgia though. Don’t want to start something new when I’m flying and far from home I’ve got to have the courage to take this step and go on this drug, something I’ve always shied away from. Thank you for sharing your story!
Yes, Ibrance is supposed to be taken for the rest of your life, just like insulin is for diabetics.
The exorbitant high cost of this life saving medication can be reduced by getting grants from different sources. Ask your pharmacy for information on financial assistance.
I have been on Ibrance since May 2020. My cancer has mainly gone to my bones and they are pretty much gone. I am on 75 mg of Ibrance and it has worked well for me so far. The only affects I have is hair thinning and fatigue. I hope to be able to stay on it! Hope you do well with it. I pay $75 a month; possibly because of the new insurance year and I am on Medicare now.
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