Apr 18, 2018 06:01PM - edited Apr 18, 2018 08:41PM by PatgMc
A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.
Posted on: Feb 24, 2015 05:21PM - edited Dec 11, 2017 10:43AM by Moderators
A bottle of Ibrance came in the mail today. I will start taking it tonight with Femara. Hoping that others starting on this drug will join me here to talk about side effects and how to avoid or treat them. So far, I've been warned about low white counts. I run very low as it is, probably because of my extensive bone mets. Anyone currently on Ibrance?
Edited by Mods to add Mod Note: Unfortunately, Romansma passed away in 2016. Our thoughts are with all who loved Hope.
Edited by Mods to add:
For more information on this medication, see the main Breastcancer.org site's section on Ibrance for information on how it works, who it's for, what to expect, and side effects. Also, read the latest research on the Research News on Ibrance pages.
Pfizer Oncology Together is a first-of-its-kind program for patients taking Pfizer Oncology medicines that offers dedicated social workers called 'Care Champions' to help navigate the complexities that accompany treatment, such as identifying resources to help find emotional support, and workplace transition, transportation and financial assistance.
For cancer patients taking a Pfizer Oncology medicine (e.g. Ibrance) or caregivers, please visit www.PfizerOncologyTogether.com.
For live support call: 1-877-744-5675
Posts 12001 - 12030 (16,700 total)
Apr 18, 2018 06:01PM - edited Apr 18, 2018 08:41PM by PatgMc
Apr 19, 2018 02:10AM JoynerL wrote:
Great advice, Pat and Ciaci....thank you! Nkb, great advice. No coffee for me this morning....having ice water only.
Apr 19, 2018 10:23AM Hobbes12 wrote:
Everyone seems to have good news.
Amarantha: So pleased that Havalen worked for you. It is always good to hear of success on other treatments that the rest of us may need in the future. I hope that the surgery goes well.
A sense of humour is so important. I paddle the dragon boat on the right side of the boat because as I tell people, I have no boob on that side to get in the way. If we don't laugh, we cry, and laughing is better.
Thereishope: The heartburn can be awful I needed prescription meds when I was on 125mgs, now down to 75 so the heartburn only happens occasionally. I use OTC stuff as much as I can.
Husband11: There were data published March 18th at a conference in Miami showing that l/I is effective in women who are using it in second and later lines. This is the first published evidence of this, that I know of or that my oncologist know of. I am trying to get a copy of the poster session. I think over time the combo will be made available more generally in Canada and Europe, but only on the basis of solid scientific evidence, not public pressure or anecdotal data. Again, use of more than one CDK46 inhibitor will only be permitted if there is solid science to back this up. Health Canada is a very science based, data driven organization.
Apr 19, 2018 10:38AM Laka wrote:
Hello ladies, Im sure this was mentioned here several times. I tried to find it but no luck. I was on my second cycle of Ibrance and nurse called me saying my WBC are too low and told me to stop taking it for seven days and come back on Wednesday for another lab. Have anyone stopped taking Ibrance in the middle of a cycle?
Apr 19, 2018 10:48AM - edited Apr 19, 2018 01:39PM by jaycee49
Apr 19, 2018 01:09PM Piggy99 wrote:
Laka, I think the Pfizer recommended protocol is to test at day 15 and day 28 (so, two weeks into the cycle, and at the end of the "break", before starting a new cycle). If the neutrophils are low after the break, you take another week off. If they are low midcycle, I think the doctor can exercise a bit of discretion (i.e., if they are 0.98 instead of 1 they can let you continue), but if they are clearly too low, then yes, unfortunately you will have to cut your cycle short and take a break after two weeks instead of three. Once your counts come back up, you will probably start a fresh cycle, rather than finish your last week of this cycle and then take another break. Your oncologist might want to start your next cycle at a lower dose, and see if you can take the full three weeks before needing a break.
It's a bit of a trial-and-error, but you will get it all sorted out in a few cycles.
Encouragingly, Pfizer did not see any difference in efficacy between the people who had delays or dose modifications and the people who didn't. A "real world" study from MD Anderson saw slightly better efficacy for the folks that had their dose lowered or had to take breaks.
Apr 19, 2018 01:43PM peculiargirl wrote:
IntoLight and Piggy99, My drug plan called ME!! The woman asked me if I knew the Ibrance would be $100/ month co-pay, and asked me if I was OK with that, And then she walked me through applying for the pfizer co-pay one card, and told me my co-pay would be ZERO! She was so kind that I barely hung up the phone before I started bawling......
Apr 19, 2018 02:08PM PatgMc wrote:
I've found the people at Pfizer to be so kind and eager to help patients find assistance. I don't know how things are outside the US but Pfizer keeps up with which foundations have money and, if there is none, can offer Ibrance free. I applied to them when it looked like I would get no assistance and they have called twice to check and make sure I'm getting the drugs. I'm thankful that I and many of you are able to get this magic medicine without incurring tremendous debt. God is good.
Apr 19, 2018 02:35PM JoynerL wrote:
Thanks for the words of encouragement, Hope. I'm so glad to see your voice among us again!
New article today....
Apr 19, 2018 03:07PM janky wrote:
Yayyy!! I just got called from MO that I can start cycle 3 of Ibrance tomorrow after 2 weeks off, phew. Between cycle 1 & 2 it was a 3 week break, so this is better. I go for CT & Bone scans Wednesday, so hopefully it will show no progression! Hugs and humor everyone!!
Apr 19, 2018 03:14PM thereishope4us wrote:
Jaylae, Introlight, PatG, Hobbes12 and others....thanks so much for your info on indigestion. I guess IT IS another side effect of this drug. I have learnt that throughout this journey I am going to have aches and pains that come and go. After the terrible pain from indigestion 2 days ago, I have been fine since. I hate the thought of having to take drugs to combat the side effects of another drug. I have the terrible feeling that if the cancer doesn't kill me, these drugs will! A friend has suggested using essential oil as a natural remedy. It worked well for my peeling/dry skin. I was also told to rub lemon oil on the feet as it helps to boost the immune system. So far these got me through 3 cycles of Ibrance.
Best of luck to all of us going through scans soon. My is coming up tomorrow and results on Monday. The anxiety is starting to build, but if I am aiming to get through 40+ rounds of scans in the many years to come, I better get used to this :)
Thanks all for sharing your knowledge and providing continuous cyber love and support!
Apr 19, 2018 03:32PM jensgotthis wrote:
I am so grateful for good news from my bone scan. “No scintigraphic evidence for osseous metastasis“. Thank you Pfizer and Ibrance
Apr 19, 2018 03:34PM jaycee49 wrote:
That's great, janky. If it comes down a week again next time, you will be right at the one week norm. Perfect.
Apr 19, 2018 03:44PM Piggy99 wrote:
Yay, Jen, that's fantastic news! Long may it last!
Apr 19, 2018 06:34PM - edited Apr 19, 2018 08:17PM by lakewoman
Regarding my TN diagnosis..Appt with surgeon on Mon 23 rd a.m..They aren't wasting anytime..This a.m they called and said appt was on may 2nd but they called this afternoon and changed it.
For those who don't know me. even with this new diagnosis I am on Ibrance and letrozole for mets to lungs from rt breast which was er+ and her2- Still seems surreal ..But I feel so well heartburn has eased..My only complaint is the ice hasnt gone out yet and it snowed a bit today..Nice to read all your posts ..You are all with me in spirit including Hope who started this thread.
Apr 19, 2018 07:12PM GracieM2007 wrote:
Joyner, hoping you get good news from your PET. I’ve had two with my other scans
Apr 20, 2018 02:34AM JoynerL wrote:
Jen and Janky, terrific news! WOO-HOO!
And now off to the PET scan...thanks, all!
Apr 20, 2018 05:44AM Piggy99 wrote:
Sharlene, happy that they are moving fast on the triple negative tumor. Hopefully it's not had any time to spread and they can get rid of it by surgery. Good luck on Monday!
Apr 20, 2018 06:08AM peculiargirl wrote:
Prayers for you Monday, Sharlene - hope the snow and ice clears up soon, too! It's a beautiful morning in NW Ohio - the sun is shining and it's supposed to be a decent weekend!
Lynn, and thereishope4us, thinking about you, hope your scans show good news!
Apr 20, 2018 07:00AM jensgotthis wrote:
Great plan Sharlene and good luck on Monday. And fingers crossed for everyone getting scans
Apr 20, 2018 07:52AM janky wrote:
JoynerL -Praying and positives for an awesome scan!! That goes out to all of us getting scans in the near future!
Everyone - Have a great weekend filled with sunshine and melting snow :)
Apr 20, 2018 08:01AM Grannax2 wrote:
I had an interesting vist with my MO. She told me, in my case re: F1 report. She thinks my response has come from the IBRANCE, not the combination with letrozole. My tumor even prior this treatment is resistant to hormone blockers, etc. Ill have a scan in May, if there's progression ill have to change treatment. I think shes like to use just IBRANCE but FDA would not approve that. So, a typical second line would be Afinitor/ aromasin. Yuck. Im like I don't want to take aromasin or any other aromatace inhibitor! They obviously aren't working and I'm even more resistant now that I was 16 months ago. So she starts talking about fda again. Sound like i will be on AA taking a drug i don't even need along with one that might work????? Insane.😕
Apr 20, 2018 08:01AM Ashlyn wrote:
Best of luck today Joyner and ThereisHope4Us!! Update us when you can. I’m right behind you on Monday.
Jen and Janky great news!
Sharlene, welcome and good luck on Monday!
Laka. Not uncommon here to have to pause if counts are low. Most get labs checked before starting cycle and mid cycle. I’ve been doing mine weekly as per my MO. I’m usually down to 0.5 by the end of a cycle. And even at 0.9 mid cycle we are now pushing through. I’m almost done cycle 6 and feel like we are just figuring out what works for my body. Down to the 75mg now.
Amarantha, happy to read Halaven is working for you!
Apr 20, 2018 12:40PM PatgMc wrote:
Grannax, just a thought so you can keep getting the Ibrance. If the FDA requires that you "get" an aromatase inhibitor along with it, could you not fill the prescription and eliminate the middle man by flushing the AI? Again, just a thought! Love to you!
Apr 20, 2018 01:17PM georgiabirdgirl wrote:
Grannax: What about Ibrance and Fulvestrant? I know some folks take that combo. If not, then I'd talk to your doc about charting your own course with Ibrance only.
Amarantha: Thanks for sharing your new treatment plan. It is encouraging to know what another treatment option might be.
Thereishope: I have just started dealing with reflux, and it's bad. I've been on Ibrance about 2 1/2 weeks and Omeprozole seems to do the trick. My doc says to just keep taking it for as long as I need it. I'm hoping that my week off will give me a break on that front too. I'm also curious about the lemon oil on the feet thing. Sounds interesting.
Joyner: Thanks for sharing that article. I hope Ibrance works for me, but it's nice to know that there are people studying potential third-line approaches to treatment. Hope your scan went well.
Janky: Good luck on your scans next week. It's hard to stay calm and keep the anxiety at bay, as those scans draw nearer and nearer.
Lakewoman: I hope you get to enjoy your weekend and your husband without too much anxiety leading up to your appointment on Monday. I also hope that your docs have a swift and effective plan to deal with that TN tumor that has popped up.
Jensgotthis: "No evidence of..." is the best beginning to a scan result! Congratulations.
As for me, I'm getting used to the Ibrance dance. It's only recently started giving me some grief with the reflux and fatigue. My main complaint is trouble sleeping (hot flashes, anxiety, stomach upset) but if it's bad I take a Unisom or sometimes a clonazepam. My hair is still falling out in clumps, but I've decided to just wear it up "messy bun" style until there's not enough to pile up on my head. It works for now. My labs today show that the WBC and neut counts are good (so far). I am so encouraged to read stories of people who have been on this drug for so many cycles. I'm still just living life in small bursts (a few months at a time), but it's not as hard as it was. Thank you all for being here. I don't comment a lot, but I do read all the posts and feel supported in the journey in a way that really helps.