Ibrance (Palbociclib)
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Vivian, you are so cute! Being you live in Ocala, I am in Ft lauderdale, I thought you would know what spinning is. It is really fast stationary bike riding to music, simulating hills and road races. Very intense workout. Some gyms call it indoor cycling classes.
As to pain, mine is definetly in my lt hip. It starts just above the waistline, radiates down my buttocks, and sometimes around to the front of the leg. It is definetly worse when I sit too long. It started on my week off and has continued into this first week. It seems to be attacking where I have known mets, but I also have them down my spine which just gets "numb" sometimes.
I also have flushed face quite often.
Roses, I too have what seems to be a constant cold. My nose runs constantly, and sometimes an added sore throat, but it is not a cold. Perhaps you are dealing with that.
OK, enough! I had a long talk with my therapist yesterday, and Let's Get Organized is going to move forward. I am in the midst of writing a mission statement and determining who I should locally contact to begin a movement. Check that thread and give any suggestions you may have.
Hugs to all, take those pain meds and tell those stupid diseases to go away! Myra.
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hi everybody! I just got my Ibrance. I will be starting after I get my initial blood work, hopefully next week.
I work full time (37hours a week) at JCPenney as a cashier. Do you think I will be able to continue to work
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can I ask, have many of you taking Ibrance had success with this even after letrozole failed? Thank you x
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HI Raine-Wells and welcome! Good luck with the Ibrance. I am still in my first cycle, and although everybody has varying side effects, I think it is doable. I haven't had any real noticeable side effects, other than the drop in WBC. I think the most important concern you would have is the low white blood counts and working in retail with exposure to a lot of people and dealing with money. Of course, talk to your doctor, but anything you could do to protect against germs would be helpful. I know ladies have suggested wearing white cotton gloves on airplanes to protect against germs. Maybe gloves and lots of hand sanitizer.
Hello to everyone else! Vivian you gave me a good laugh!
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Torridon, My TM's were down for the 1st time in a long time (2nd cycle of Ibrance/letrozole) after failing on letrozole alone, and failing on faslodex alone. So I am optimistic, but I have not yet had any scans, so too early to say whether it is a success, although I consider it a success just to be free of bad SE's that I would have on other meds. Although it is not a cure since my cancer is in the bones/lung, more quality time is what I hope for on this drug.
The letrozole/Ibrance is also an improvement for me over the Faslodex, since I had itchy bleeding red bumps on my arms and legs on the Faslodex (However, I am wondering if I will go on the faslodex with ibrance once the letrozole with ibrance stops working - guess it depends on the results of these trials).
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3Holly - Congratulations! I was just talking to my MO and she indicated that Ibrance will be used with the Faslodex if/when we need to move on to another treatment (based on this latest study), so I think if Ibrance is tolerated, it's going to be used in combination with all these other hormonal therapies. That's the direction the drug is going. So hopefully we get the benefit of these drugs until the next new one comes along.
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Torridon- It's hard for most of us to answer your question because the drug is so new to us, too.
"Success" for most of us would mean stability, at least, and reduction in tumor markers. But most of us haven't been scanned and markers are not making dramatic changes yet. I think the majority are waiting for 3 cycles before scanning or looking at tumor markers as evidence of the drug working. Keep watching, though, as the time is approaching soon when we should start seeing some results.
I'm kind of surprised at how different I'm feeling on the 100mgs as opposed to the 125 I started out on. I have to say I have no side effects whatsoever (except for blood counts, which haven't been assessed on the 100 yet).
The itchiness and tiredness I experienced on the 125 are gone. No headaches, either (although I still think that's a Letrozole SE.) Maybe my body has just adjusted, idk. I do hope this doesn't mean it's not doing anything, though.
Funny how we always look at the negative of whatever positive we might be handed. lol.
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My ONC went to ASCO last week and is giving a seminar for patients at the City of Hope this weekend. Its called Patient Research Update, and is meant to discuss new areas of innovative research in breast cancer treatment. I am SURE ibrance w/letrozole and ibrance w/ faslodex will be a big topic of discussion. I will report back next week with any interesting information. It may be stuff we already know or have surmised, but he is very good at explaining the science behind the medications, as well as the study results. I'll take notes.
Any So. Cal. peeps interested in going, its Sunday June 7 from 3:00-5:00 at City of Hope in Duarte. Email philanthropy@coh.org to RSVP. I'm guessing you dont HAVE to be a COH patient.
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Is anyone getting Ibrance covered by their insurance for 2nd or 3rd line treatment? I need a treatment change. Both my oncologist and I want to go with Ibrance. Hormonals have worked so well for me in the past, but I'm getting to the end of the line with them. The cancer center is running it all through United healthcare, but I have a hard time believing they will approe it. Should know in a few weeks.
Marie
St Louis, MO
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I am still waiting for approval, four full business days after my oncologist meeting. Not sure if this would be considered the second or third line for me. I did aromasin as part of my Stage II treatment, and then we added the Faslodex. Dropped the aromasin about two years into the Faslodex since the side effects were too much.
The waiting is starting to annoy me. Is this a normal amount of time in other people's experience?
*susan*
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Marie many of us are second or third line treatment or even more. I really had no issues getting it approved with my CVS Caremark Insurance. But it did take a week and got me a little nervous.
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Marie, if you read this thread, you will see most of us are second or third line and have spoken about it.comsiderably.
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I have finished my second round on 100 mg the first round at 125 mg was stopped after 2 weeks do to low white blood counts. I will have blood work on Friday to see if I can start round 3. I really haven't had any side effects I am working full time 40+ hrs a week in a busy office where everyone has been sick a lot, even with low the low counts I didn't get sick I waited for it to hit but never did I figured I would have been quick to get it. I haven't noticed feeling any different when my counts were the lowest.
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I have United Healthcare. From the time my onco submitted it to the insurance until I received it was 3 weeks
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Susan, I got a 21 free follows me on trial from Pfizer through CarePlus. During this time I was denied insurance and have appealed. God knows how long that will take. In the meantime I'm on my third week, so at least I got to start. I'm hoping now the the FDA has approved Ibrance for second line treatment of paired with Faslodex that my ONC will switch me from Letrazole and I'll be able to get approved. If it doesn't happen within two weeks I've got to cough up ten grand. Yikes!
Hey, is anyone out there already on the Ibrance faslodexcombo? Just wondering.
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I don't know what I was trying to say but it wasn't "follows me on". Lol
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Stef,
Has the FDA already approved with Faslodex? I thought the paper was just presented a few days ago. Haven't read about approval. Do you have a link? Maybe that would strengthen my case? Since I just completed 5 years of Faslodex, I don't expect that my oncologist will want to use that combination.
Guess I have to sit tight and wait this one out.
*susan*
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Susan, I have United Healthcare and I was approved within a week. It went thru Optimum RX with the Pfizer co pay card. Make sure your onc filled out the paperwork correctly. I had failed Letrozole and fasolodex on their own. My onc was involved with that trial and the results were promising. Don't know about approval yet though. Good luck, Myra.
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I don't think Faslodex/Ibrance combo has been FDA approved yet. Trial results were just released, but I haven't heard anymore than that.
Nausea has calmed so all you doubters out there....it really could have been that evil pizza!
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Romansma, glad you are feeling better.
A friend told me the trial results were just released and were positive, so hopefully all the insurance companies will now approve it.
I just looked it up - if I'm reading it correctly, it looks like the ibrance with faslodex (fulvestrant) - in the Paloma 3 trial results - more than doubled the progression free survival rate as opposed to using the faslodex alone, for those who failed previous hormonal therapies. Didn't see anything regarding overall survival rate, but more than doubling the progression free time sounds successful,and I hope this means it will now be FDA approved with the Faslodex as well as with the letrozole (and therefore covered by insurance) for those who may want to try the combo after the ibrance/letrozole stops working, and for those who are already on Faslodex or are considering the Faslodex since the combo is now proven more successful than Faslodex alone.
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susan- As Myra mentioned, it's important that your oncologist's office fills out the form carefully and correctly with your ER+status as well as your mets very clearly marked. Mine was rejected at first because of the way the insurance co read the forms. If you are denied, be sure to ask your onc's office why. They are the ones who should be pushing this through. You might call your doc's office and ask how things are going.
The fact that you're not first line shouldn't make any difference. The majority of us here are not first line and we all were approved. Once the form was corrected (they didn't think I had mets at first as it wasn't listed on page 1) it was approved within a day. (CVS Caremark Specialty)
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Romansma- Thank goodness you're feeling better! Maybe you just caught a bug. Being a bit compromised, it wouldn't be hard to imagine. Is this the last round before you take your break for your trip?
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Right,sorry. My bad. FDA has not yet approved Ibrance as a second line therapy, although it looks like 95% of the women on this board have gotten coverage anyway.
As of yet, I am not one of them. BUT I'm still working on it and since everyone else is getting approved, I have high hopes.
Susan, I just completed 3 years of Faslodex with exemestane, which recently failed. I dont think that excludes me from the Ibrance FAslodex comination, as it has shown to be successful where single use of faslodex has failed. Lets hope so.
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http://www.firstwordpharma.com/node/1284218#axzz3c...
The oncologists are already there. The FDA will soon follow.
Insurance companies don't gain much by denying Ibrance when Affinitor is just as expensive.
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Romansma, glad you're feeling better, now stay away from the pizza, ok?
Susan (and others trying to get Ibrance in a slightly off label way like 2nd line or with Faslodex), a lot of states, including Massachusetts have laws mandating insurances cover drugs for cancer that are off label if they meet certain criteria which, in my opinion, these uses do. The MA statutes are here:
https://malegislature.gov/Laws/GeneralLaws/PartI/TitleXXII/Chapter176B/Section4N
https://malegislature.gov/Laws/GeneralLaws/PartI/TitleXXII/Chapter175/Section47k
https://malegislature.gov/Laws/GeneralLaws/PartI/TitleXXII/Chapter175/Section47l
And in other states, try googling [state name] off label drug coverege.
Good luck, everyone trying to get that approval!
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No idea why that last one didn't link, but it's 3 separate links to the three parts of the statutes
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hello,
On the Pfizer appeal, as others have pointed out, make sure everything is correct. I was denied due to income limits and was asked to summit our 2014 income tax returns along with our household expenses. The appeal was successful. Have your onc's office help you if this the case
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Hi ladies,
I saw on another thread a link that was being discussedbut I was particularly interested in the clinical trial drug that this stage 4 lady was using in combination with Femera: ribociclib. It looks like it is similar to Ibrance but not quite. Has anyone heard of it or know anything about it? I was wondering if this could be an alternative to Ibrance if that doesn't work. Here's the link where it's mentioned.
http://blog.dana-farber.org/insight/2015/06/living...
Hope you all are enjoying a good day!
Joanne
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I saw that too, Joanne. I know there are 3 drugs that all are similar. I think Pfizer just beat the other 2 to market. They are all CDK Inhibitors, but may have slightly different make ups. It will be interesting to see if they are possibilities, but my thought process wonders why one CDK would fail and another work. Although, we see that aromatherapy inhibitors have different mechanisms, so I guess it depends on how different these are. We will have to do a littleness research. For anyone knows. Please help I so out.
Sandilee, yes, when I finish this cycle next week, I will take a break until at least the end of the month so that my WBC has a chance to recover a bit for my Alaska vaca. I also suspect it's scan time. I will have completed 4 cycles, and wthl increasing tumor markers and enlarged nodes, it's probably time to see what's going on! Hoping it's not what I suspect and I get knocked off my chair in surprise!
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Very interesting - it's the LEE01 drug according to my friend. I wonder if she went into the LEE trial prior to the FDA approval of Ibrance. I was offered a trial with the LEE01 drug prior to going to the Ibrance, but it was a trial of 3 drugs (more possible side effects with 3 versus 2 drugs).
Good questions, Romansma, regarding whether one CDK inhibitor can work if another fails. I hope your scans go well, and that you have fun on vacation - cruise to Alaska sounds so exciting!
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