Ibrance (Palbociclib)
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Singlemom1 - Ibrance average progression free survival with letrozol was 24.8 months. To compare accurately you have to look at the population in the trial but at best it is similar ... if those are the ribociclib numbers. Do you have a reference? I haven't seen any publication for PFS for ribociclib and I have been watching for it. As I understand it, they cut the trial for ribociclib short as soon as they met the standard for a clinically meaningful response because that is all they need for FDA approval. I figured the data just isn't there ...
JoynerL - nice work! you found the two Ibrance threads. Find the link to mark them as favorites and stay with us! You will be interested in the Bone Mets thread as well, so check it out and mark it as a favorite.
>Z<
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http://www.onclive.com/web-exclusives/fda-approves....
Z- this is where I read it. I think I understood it correctly when it stated that PFS was assessed at 11 months but then again 15 months later.
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On the topic of ribo vs palbo, options are good. At worst, you trade fatigue and low blood counts (palbo) for nausea (ribo), but at best, you may trade fatigue and low blood counts for no nausea at all, as it goes without saying that the rate of a given side effect isn't 100%. Or there may be women who respond to one, and not the other. Or women that can't take palbo at all because of the effect on their blood counts. I also hope the competition lowers the price and improves access to treatment.
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Great. We do have PFS results for ribociclib (aka Kombucha or whatever).
a subsequent analysis showed that the median PFS was 25.3 months with the ribociclib combination versus 16 months with letrozole alone.
On the one hand, people had .5 months more progression free survival with ribociclib than with ibrance; however, the ribociclib trial was a significantly healthier group overall, since the folks on letrozol alone went 16 months without progression in this ribo trial and only 14.5 months on the palbo trial. There was a significantly greater increase in PFS over the placebo in the ibrance trial.
We're talking about a difference of weeks. Since my goal is to live past April, I find these trial results a depressing read even when they are "positive."
But these are median PFS stats. We're all above average here and headed for the very rightmost tail of the curve ... which disappears off the chart.
>Z<
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OK, jumping in here. Taking a break from posting for a bit.....
BUT, Lulubee, I am officially awarding you with the HUMOR TROPHY!!! Your scenario with the Amazon disco was over the top hilarious!!!
Joy, welcome to this marvelous group! Bummer that we all need to be here, but there are no better folks in the universe to be on this journey with!
Hugs to all, MJH
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Hi, Joynert! Welcome to this dance with Ibrance and Happy Birthday! I'm 67 and was diagnosed the first time in 1994. The widespread bone mets were diagnosed in September, 2016 and I started Ibrance (100mg/middle dose) with Arimidex soon after that. The only consistent side effect I've had is fatigue, annoying but nothing like SEs I've had from chemo in the past. I've been scanned once (at 3 months) and the PET/CT showed what my oncologist called a remarkable response. Those results, added to the messages from survivors here, have me confident I'll have many more years. I pray that you do, as well.
It takes some time to wrap your mind around the new diagnosis, that's for sure. The good news is that every time you hear of people who've been doing well on Ibrance since the early trials, you'll be encouraged that you can survive until the next big breakthrough. I subscribe to emails from Oncology Business Review and love reading what's up-and-coming. That's where I heard about our friend, Ibrance, before it ever had a name!
I send everyone my best from Tennessee where it's cold today but we have no snow!
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Welcome Joynert I'm so sorry you had to find us but these are a great bunch of ladies to hang out with. You've joined me in being a couple of women here with cancer returning after 25 years. I have mets to the lung, found after a chest X-ray because of a cough I had. I also had a mastectomy, Chemo, implant reconstruction but with silicone, in 1991. I had 8 nodes of 26 positive. I'm a few years older than you, a young 76, last birthday, so we get to be the grand dames here
. I'm surprised to read you were on Tamoxifen for 15 years. I only had 5 years and thought that was the standard of care back then. You must be even more shocked than I was to have a return of cancer with only one positive node. The good news is that my oncologist said we can live a long time because our cancer is slow growing since it took so long to return.
Keep reading you will learn lots here and feel much better after this initial shock of having it return.
Hugs to all,
Faith (in the future
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Faith, I thought sure I'd be the oldest here at 67! When I was diagnosed at 44, I thought I was going to die in months. My mother was the only person I had known with cancer and melanoma took her life in 2 months. She died at 56. I'm so thankful to still be here....too old to die young! I have friends who are decades out from metastatic cancer. One had lung, bone and brain mets and she has been NED and off treatment for over 8 years. Another had bone mets 18 years ago and she is NED, not on treatment. Another was diagnosed with bone and liver mets 18 years ago...has been on treatment off and on but still enjoying life. There is every reason to believe that many of us will do well and live to see this disease cured. I am positive for BRCA1 as is my daughter who had BC 9 years ago. My biggest prayer is that the cure comes before my 13-year-old granddaughter faces this.
Here's a High Five to all the old girls here! And I pray many prayers for those of you still raising your babies.
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Patg, I love hearing your stories of all those with mets being NED so long. It gives us all hope. For sure we need to pray for all those here still raising their children and a cure so our daughters and granddaughters don't have to face this.
A high five back at you and all us old gals.
Faith (in the future
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Wow, PatgMac and Faith, this is so very encouraging! Faith, what your doctor said had occurred to me, too...if it took 26 years to return, perhaps it will continue to be a slow grower. A concern is that I had a CT scan of my chest last April ('16) for a chronic cough that we still haven't run down (broncoscopy tomorrow but all lung scans [very recent] clear), and the cancer wasn't evident in April. A notation said "multiple sclerotic lesions in the spine may represent tiny bone islands but is nonspecific" and recommended follow-up in 4 months, which I foolishly didn't see.... or do . All of a sudden 8 months later (but thank GOD for the new unexpected scan), the description is "extensive sclerotic foci throughout the skeletal structures which has progressed significantly since the previous examination and is most suggestive of sclerotic metastatic disease". That sounds fast-growing to me, but I don't know how to interpret this. Further, I don't have, and can't seem to find through any of my past doctors, my old path reports for comparison. It is what it is, I guess.
Faith, all of those reports of survivors is so incredibly encouraging and up-lifting...thanks, girls! Onward!!
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What does NED mean? I assume it's good and related to doing very well!
And I will love being the grand old girls of the group!
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Joynerl, it means "no evidence of disease".At the top of this page to the left is a help column that will answer a lot of your questions including what the abbreviations are. There are lots of topics there to get you started.
Faith
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Z,
I chuckled when I read your post. I knew my memory was bad, but I had no idea I would be challenged to carry a pad and pen around with me just to remember why I walked into a specific room in my house! So iBrance and Letrozole DOES have side effects of memory loss. Good to know.
I, too, have a job that demands my full attention, and I find myself apologizing more and more for forgetting to do things. But my inc told me to let it go...and not to sweat the small stuff. I'm very fortunate to work from home, so I can wander around the house until I figure out what it was I forgot....no one knows but me, Huey Lewis, and Teddi (my two yorkies).
I'm also starting to experience the extreme fatigue that everyone has posted about. I have had to lay down for a nap just to get through the day, but that's okay. I can handle that. All in all, I am not having any severe side effects, and I am grateful. I hope to be able to stay on these drugs for a long time.
Keep the posts coming. They lift my spirits and remind me we are in this together!
Booboo
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Joy: You and Ibrance are going to re-train those bone mets! This is how I picture the process. When I take the pill, I think of it as a personal trainer moving around the cancer cells and teaching them to start behaving like normal cells. I eat good food so they are properly nourished during their re-training. (I also treat them to chocolate ice cream on occasion.) [I'm not screaming...I just can't make this bold, large type go away. Ha!]
Sclerotic Lesions of Bone (University of Washington)
What does it mean that a lesion is sclerotic? Well, generally, it means that it is due to a fairly slow-growing process. Bone reacts to its environment in two ways — either by removing some of itself or by creating more of itself. If the disorder it is reacting to is rapidly progressive, there may only be time for retreat (defense). If the process is slower growing, then the bone may have time to mount an offense and try to form a sclerotic area around the offender.
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I'm waiting for the tabloid magazine with the blurry photo of the "Kisqali Caught on Camera".
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Shetland I love it. You are too funny.
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INteresting trial for patients who've progressed on Ibrance to try Ribociclib. https://clinicaltrials.gov/ct2/show/NCT02732119
I admit I don't fully understand the trial explanation...but I THINK they are investigating the benefit of going to Ribo as secondary line. What's interesting is this one is taking people with bone mets. So many trials don't want bone mets patients.
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Anyone else having problems obtaining Ibrance? I'm on Medicare with a medigap health plan and a separate prescription drug plan called Silver Script. On the front of my Silver Script I.D. card it shows CVS/Caremark.
My prescription is faxed to CVS. Silence. Clinic worker phones CVS. CVS has no record of the fax. Clinic sends the prescription electronically to CVS. Silence.
In the meantime Doctor and I are on the phone and he's asking if I've received the Ibrance yet. Ummm..no.
Clinic worker phones CVS again and is told something about a "pilot program" having something to do with Medicare is requiring all Ibrance to be dispensed from a mail order pharmacy in Florida. The pharmacy company is called Advanced Care Scripts (ACS). Clinic worker contacts ACS and I'm assuming my Ibrance prescription is in their hands by now. Clinic worker said she'd phone me back with more information by end of business today and that didn't happen.
Rats. Rats rats rats! If ANYTHING can go wrong, it does!
Kessala
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Stay after them. They do offer a discount card but I'm not sure you can use it with Medicare. I would go to the website
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I was newly diagnosed with bone mets in late Feb 17 after nothing for 26 years. Onc immediately put me on Faslodex and Ibrance. She ordered the Ibrance right away, which I assumed would come immediately. I'm on Medicare with the supplement and Silver Script, too. It took about a week for CVS Specialty Pharmacy (out of DC for me; I'm in VA) to call and approve the medicine after onc ordered it. It is HUGELY expensive. Approved price is $11,500ish/21 days. With Medicare, it was knocked down to $3040/21 days for my co-pay. Because that pushes me into the "catastrophic" insurance category (I may have the details wrong), the cost to me for months 2-12 is $558/21 pills per month. First month $3040 and then $558/month. This is the direct line for the CVS Specialty Pharmacy I'm using. Perhaps you can call and talk to them: Specialty Pharmacy: Washington DC 866-813-3603
There are apparently ways to get this medicine for far less, but we appear not to qualify in Medicare is paying. I haven't found a way around yet, but this is my first month.
Good luck, Kessala!!
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Has anyone been told NOT to take PPI's with Ibrance? My MO told me today, that a colleague of hers went to a breast cancer conference in Miami, and one topic was how PPI's inhibit Ibrance. My MO said she did not know about this until now. I was on Omeprozole but recently switched to Nexium. She said I can only take Pepcid AC and Tums for my acid reflux and heartburn. If this is true, I am upset that my MO did not know this.
Z, I know you will know what the deal is with this.
Please respond if you have been told this by your MO.
Thanks,
Robin
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I've learned the Ibrance manufacturer's co-pay assistance card won't work if you are on Medicare.
I DO have co-pay assistance through an organization called Patient Advocate Foundation. They don't care if you have Medicare but you must be insured. I was interviewed over the phone where I had to give my Social Security number and annual income. Within minutes I'd been approved for a $5,000 grant to help cover my co-pays.
I've been using the grant money to cover my Xeloda co-pays for over a year and now that I'm starting Ibrance I found out Patient Advocate Foundation doesn't care if it's helping to pay for Xeloda or Ibrance. It just has to be a cancer drug prescribed for breast cancer.
I'm hoping this ACS specialty pharmacy in Florida will coordinate with my charitable grant (and I've been assured they will) I won't believe it until I see it. So far I haven't even seen Ibrance so who knows who is blowing smoke up my skirt!
Kessala
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rpoole, after a month of taking 1tbsp a day of Bragg's Apple Cider Vinegar with the Mother + going Gluten Free, I stopped taking PPI and have no symptoms. Bragg's is sold at regular grocery stores or can be ordered online.
Re: Ibrance payment....Joy, your oncologist has a Pfizer rep calling on him/her who has access to samples. I would call and ask for the first month from them so you can get started without waiting. You might call the onc's nurse to get this rolling.
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JoynerL, Grannax2, Faith, and PatgMC - I joined the Ibrance dance on Jan 11th and am on cycle 3. I am 72, and was diagnosed 26 years ago (stage 2) and am now 7 1/2 years stage 4. I am still working fulltime at a job I love (18 years). I rarely post, but agree with the many texts thanking the women who share incredible insight and expertise on these threads. I also agree that it is important to be an active participant in your care and most importantly that you should allow no one to take away your hope. My definition of hope has changed many time, but my hope remains and is strong. Perhaps together representing six and seven decades (and if I did the math correctly - together we represent 355 years!) we can help restore hope on those roller coaster days of awaiting counts, CT results, fatigue, pain, or everyday life events that take us off balance.
Z, I want to thank you for welcoming me and responding to my question when I posted back in January asking if anyone had problems with the "moderate" interaction of my blood pressure medication (Diltiazem) and Ibrance - I contacted my cardiologist – he confirmed that the interaction causes increased uptake of both drugs, and on day 10 of the first cycle I started a reduced dose of Diltiazem (120 mg.). My blood pressure is well controlled and I have been able to continue on the 125 mg of Ibrance. I felt better on cycle 2 and my counts have also been better as well as the fatigue (also changed the time I take Ibrance and Femara to 7:30 p.m.)
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Judy, thanks for your lovely post. I too believe that having hope is a vital part of our healing. I directed a support center for survivors for many years and the hardest hurdle we had to overcome with someone newly diagnosed was a doctor basically assigning them an expiration date. I'm thankful to say that many of these people have far outlived the date and some even outlived the doctors! My oncologist has always believed that a hope-filled support network out-performs much cancer treatment. This doctor is 78 years old and has seen a lot! He's so pleased to hear about this group.
I have great admiration for those of you who took Adriamyacin back in the days before Zofran or any of the decent anti-nausea meds. I had one treatment that way with only Compazine and it was really terrible. The fact that you all completed treatment in those days tells me what Warrior Women you are! (Someday I'll put the words to a song one of our support groups wrote about Warrior Women.)
To all of you young people facing metastatic breast cancer, may I say that there is no way you're going to mess this up. Prayerfully make each decision along the way, remembering that you have every reason to be hopeful. Each time I faced this there were medicines that had not been on the market the last time. I remember reading the magic words associated with Ibrance's trials and seeing how long it had been since there was anything this life-changing for ER+PR+HER2- BC. We are on the cutting edge of turning this disease on its ear! One day let's all gather at one of the MBC conferences and fly our colors!
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I am on my fifth month of ibrance and have Medicare and Medicare part d for prescriptions, I have never had any problems getting the medicine and I only pay $3.00 each month, I use Diplomat Speciality Pharmacy in Detroit MI.
I call the first day of my week off and two days later the ups man is handing me the box of medicine. All I remember was having to get a medical necessity pre authorization. I would call Medicare and find out what the deal is. The squeaky wheel gets the grease. That I have learned going through all of this. No one should ever have to worry about getting the medicine you need. It makes me so mad. 😡
Sending you happy mojo, so you get the medicine! 🔮💊 you are in my thoughts. Rest well ladies ~M~0 -
Obviously, I'm feeling long-winded tonight! Sorry.
I just wanted to add this. I decided when my chest wall mets showed up in 2012 that I would not look at any piece of paper declaring me Stage IV nor would I let anyone say that to me. Same when the bone mets showed up in late 2016. I refuse to own a diagnosis that everyone equates with being terminal. I've met thousands of cancer survivors at all stages through the years. Some of those diagnosed with Stage Zero have died and some with cancer died from other things. Many with late stage cancers still live very well. The only one who died exactly when the doctor said she would was my mother and there was no treatment for melanoma then. I still think she would have lived longer if the doctor had offered her the tiniest bit of hope.
If you'd like to read a book about what hope and belief can do, please get Dr. Lawrence LeShan's book, Cancer As a Turning Point. I also recommend Radical Remission, which discusses people across the world who have overcome difficult cancers and how they did it.
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Kessala and JoynerL, l also have Medicare and Silverscript Part D. Last year in 2016, I got my drugs from ACS in Florida. They found a grant for me that paid for the Ibrance. I paid $3.00 for the Letrozole. This year the grant foundation had no funds so I was able to get the drugs directly from Pfizer for free. They do ask for your social security income or any pension income but not any of your other assets. Contact them and ask for an application to see if you qualify. Can't hurt to ask. You will save about $10,000. a year.
Although I'm sorry there are more of us ladies "of a certain age" here. I'm glad to see you join our forum, I've felt like a lonely old lady here sometimes, even though everyone is very nice. I never really wanted to mention my age but I think we do have a little different perspective on this disease and I think we can offer hope to others of any age.
Faith (in the future)
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Robin - I had no idea that PPI's inhibit ibrance. I am never too concerned with interactions that increase the Ibrance dose, because you can alway drop the dose if the Ibrance side effects get bad. There is no real problem with a high dose if you are tolerating it. Inhibitors are more serious.
For those of you who are not "in the know" regarding proton pump inhibitors (PPI), these are a group of drugs (such as omeprazole and rabeprazole) that inhibit the activity of proton pumps and are used to inhibit gastric acid secretion in the treatment of ulcers and gastroesophageal reflux disease.
Thanks for mentioning that. You do seem to get one gotcha after another on this protocol ... I am hoping that you are finally getting the full, effective treatment.
Judy - welcome back. glad that was sorted out, thanks for the report.
And goodness this thread is moving. Read everything but gotta go to sleep.
>Z<
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thankyou everyone for your detailed and at times humourous posts.
Ibrance has not been approved yet in australia...but it is on the pbs agenda for march..so feeling ggood even opened the champers today
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