Ibrance (Palbociclib)
Comments
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I am so confused about the Ibrance situation right now and I was wondering if anyone could clear it up for me. I just had to change treatments to Fasoldex. After reading about Ibrance, I asked my MO why not add that to the mix as well. He told me that there were no studies to show that Ibrance along with Fasoldex was any better, that the side effects were worse than just the Fasoldex alone, and that insurance would not cover it since it wouldn't be my first line of treatment.
I went to a meeting tonight to hear Dr. Hudis speak at MSK and he basically said the same thing.
However, when I am reading through the threads it seems there are plenty of people taking Ibrance who have been treated in the passed and that it is working great.
I guess I'm not understanding why wouldn't I want to be on it?
Renee
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Lovely photos ladies! You all look terrific. Congratulations to your handsome little man, Hope!
My daughter graduates high school tomorrow. I have the same thoughts, just hoping I will to be able to see her graduate college in 2019 and be there when my son graduates high school in 2020. But tomorrow I vow to relish the moment!
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Romansma,
Your son is beautiful and I think with all the new discoveries out there you have every reason to be optimistic. You are doing everything you can and taking good care of yourself. I know it was (and is) hard. I feel the exact same way. Every milestone is so much more important it seems. I have a close friend whose daughter has cystic fibrosis and she has watched every milestone of her daughter's life with fear it could be the last. She tells me she just kept going on with all the new advances and medications. Just like we are doing. Her daughter is now 27 and is doing well after a total lung transplant.
But, I know exactly how you feel. One of my daughters is getting engaged and I hope she plans the wedding now. I feel a bit selfish, like if I was "normal" I might tell her to wait until after her master's degree or something. But, I don't want to miss it! I don't want to miss my other daughter's college graduation, either, and feel so grateful that I've come this far with them
I thought you had to get your blood drawn soon. Let us know how you do. I am not getting my first blood draw until week 4. Seems like they should be doing it sooner.
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Hi Rseman, the Faslodex/Ibrance combo is not yet FDA approved, but this new study finding points to it possibly being fast tracked like the Femara combo. http://news.cancerconnect.com/combination-of-ibran...
My Onc believes that when the Femara combo fails, the faslodex combo will be next (I'm assuming that means if/when it's approved). She seems to think the way Ibrance studies are going, this drug will continue to be paired with the antihormonals.
Also, most women here are taking the Femara combo as a 2nd or 3rd line treatment. There are some who had previously taken Femara and it failed them, but were put back on this combo.
The major side effect of Ibrance is the low WBC but it seems most here are managing them either with reduced dosage or delayed cycle starts.
I hope this helps. I'm sure others willshare their thoughts.
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love this thread!
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Rsman and all,
Do I have this straight, You are on Faslodex and want to be on Ibrance, too?
I am a bit confused about the Femera vs Faslodex thing. I don't think Ibrance works without some kind of hormonal. Am I wrong? Do ER- women take it? Was there a study with Ibrance/Femara vs Placebo? Let me know if any of you guys out there are on Ibrance alone.
Both Femara and Falslodex work with the hormonal system, but in different ways. Femara blocks androgens turning into estrogen (aromatase inhibitor) . Faslodex "inhibits cell division by binding with and downgrading estrogen receptor protein in breast cancer cells"
Falslodex is a bigger deal. I don't want to take Faslodex if I don't have to because it messes with your liver and stuff. It has more side effects. And it's a shot (a 2 hr trip to the treatment center, if reason enough!) But, me and several others have already tried Femara and it stopped working. The big question is: Will Femara start working because it is now being taken with Ibrance? This is the danger with using drugs before thy have been fully tested! But then, I don't want to wait! None of us do! Also, the Faslodex/Ibrance study by Lilly is still in progress.
Your doctor talks about second line drugs. Right on the prescribing information for doctors it says " FASLODEX (Fulvestrant) is a prescription medicine used to treat hormone receptor-positive metastatic breast cancer in women who have gone through menopause whose disease has spread after treatment with antiestrogen medicine. I think that make Faslodex second line hormonal med, right? Ibrance is also a second line drug. I think your doctor wants to save it for later and draw out your options. But then why give it alone?
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Love all the photos! The photo of you and your son is wonderful, Hope. Thanks for posting. And I loved seeing Myra and Dorothy. How fun that you actually met! I wish there was a way we all could meet, but being spread out across the country, easier said than done.
Rseman- I can understand why you're confused.Your doctor is kind of right, in that the FDA hasn't officially approved the Falsodex/Ibrance combo, although the studies have been submitted. It will most likely be approved in time. Because it's not approved yet, insurance wouldn't cover it. Once it's approved, however, it should be available to women who are 2nd and 3rd line, not just 1st. Which means, down the line, you should be able to add it to the Faslodex. He is also right that the side effects are more serious with Ibrance than with Faslodex, specifically white counts. They need to be carefully monitored. I was on Faslodex alone for 3 1/2 years and it was just a once a month shot in each hip and done. Easy. I would have been happy to stay on it indefinitely if it had continued to work. But I'm grateful for the long progression-free years I had on it. Now, with Ibrance/Letrozole, I need to have my blood taken every couple of weeks until they figure out if my body can handle the lowered counts. It's kind of a nuisance. It will be worth it if it works, but it's too soon to tell, for me.
It seems like you are on a good therapy, and Faslodex can work alone for a long time. If it continues to work, maybe he will be open to letting you try it with Ibrance once the studies come out and the drug is FDA approved.
Vivian- I'm not sure what you meant about Faslodex messing with your liver. My liver numbers have been fine throughout my treatment. I think of Faslodex as one of the easier options out there. I didn't have any of the aches and arthritic issues that often come from the AIs. My CEA went from 260 down to 3, and stayed down for three years. It's now just beginning to climb up a bit, so I'm eager to see what my new combo will do.
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Sorry jjski, You answered a lot of my questions. I did not see your post before I sent "send" (actually I forget to press "send" and was shutting down my computer!) I think my 3rd or 4th lines of treatment are messing with my brain cells right now!
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Great pic Myra and Dorothy! Wouldn't it be great if we could all get together and discuss all this in real time?
Chalk this day up to more great memories. It was a very good day and I truly am grateful to be here to enjoy it. Tomorrow, MO appointment. I'm dying to know what my tumor markers are doing. I probably should stop using that phrase, huh? Sleep well!
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good luck Hope. It would be great if we could all meet. Have a great day all! Myra
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Good luck today Hope! Keep us posted. I agree, it would be wonderful to meet all you ladies sometime. We certainly have a unique, real connection.
Joanne
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Okay..... still waiting and waiting here to even hear about the approval, but in the meantime I have realized I have no idea how to pronounce either Pablociclib or Ibrance. Is there anyone on this thread that can create a pronunciation guide like they do in a dictionary? Tomorrow will mark 5 weeks without a complete treatment. I am taking the femara. but that doesn't feel sufficient.
*susan*
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Susan, that is insane! What is the hold up? I was approved in a week. Is your MO staying on top of this. Perhaps it is time to get on your ins. co. and require an intervention to get this moving. Five weeks is an inordinate amount of time. Myra.
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Myra,
I was traveling during much of this period. The approval process was initiated 13 days ago. If I don't hear back from them tomorrow, I will be calling the doctor directly. She has clinic hours on Thursday.
*susan*
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I was on Palbo trial for feasiblity (early stage) --- I have heard these pronunciations from my MO:
"Pal" - "bow" - "sigh" - clib (like "clip" with b substituted for p)
"Eye" - "bran" - ce ("brance" rhymes with dance)
Hope this helps. My MO did lead the feasibility study; so, maybe this is accurate...
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Thanks Daisy. That seems to be what my oncologist said as well. These made up words are annoying!
*susan*
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Gotta agree, the drug names make me crazy sometimes! I'm a little nervous about my appointment today. I think I've done a great job at convincing myself that this could still work, even though my tumor markers have increased. It's been about 4 months since the approval of Ibrance, so we should start seeing results from many of us that have been on this combo from the start. We have this mini-trial going on right here on BC.org! On that subject, anyone gaining or losing weight on Ibrance/Letrozole combo? I lost weight on the Afinitor/Aromason combo, just didn't have an appetite and things didn't taste good. I've gained 11 pounds on Ibrance/Letrozole. My MO says it's the menopausal side effects of the drugs slowing my metabolism. Not sure I buy that. I was slammed into menopause a few years ago by an oopherectomy. I suspect it has more to do with my sugars not being as stable as they were before. Whether that is drug induced or something else remains to be seen. Anyone else having higher glucose readings on this combo? or maybe it's just because I take too many naps because I'm so darn tired! Either way, I'd like to get a handle on this before 11lbs turns in to 20!
Have a great day in Ibranceland! I will report back as soon as I know more.0 -
Susan I was on Femara and Herceptin only for almost 5 years with NED, so the Femara can be powerful enough to work on its own, especially if hormonals have worked for you in the past. That being said, I think it took me about two weeks to get my approval for Ibrance. But good that you are following up with your onc. I got very nervous also with the delay.
Hope good luck with your tumor markers. Hoping that they are now on a downward trend. Yes it would be great if we could all meet in real time. It was wonderful spending real time with Myra.
A really beautiful day here in NYC. Hope everyone has a great day.
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Hope I have gained a few lbs with the Ibrance/Femara combo, but I chalk it up to having a better appetite than I did when I was on Halaven. But I have been able to manage my weight during most of the drug combos I've been on over the years. I'm taking Metformin at 1000 mgs a day which helps with the Glucose levels and also helps with weight control. Also take Green Coffee Bean by Jarrow which helps with Glucose and is said to help with weight control. Best of all, the Metformin is said to help control the cancer, which is really the key reason for taking it.
Dorothy
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My weight has been very stable mainly because I get full pretty quickly. I usually eat about half on my plate in restaurants. And m wine intake is a glass or less! This last time I did notice my glucose was high and it never has been before, but it was not fasting. Myra.
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I haven't gained any additional weight on Ibrance yet. I noticed a few additional pounds when I first went on the antihormonals though. Also, I had my blood work done and my glucose level was slightly high too (no fasting) and that was after one round. I think there is a trend here. One of my markers continues to drop ca125 and CA 15-3 has been in the 30s the last several months, although it has gone up in the range of 1-5 points in any given month. My Onc is not concerned as she says it's in the same range. She would be more interested if it doubled in any given month. My WBC and Neutrophils were okay but my lymphs dropped from .6 to .4 from the end of week 2 to end of week 3. I have another blood test on Friday to see if they recover. I may not restart in any event until after I come back from vacation on July 4, since I will be traveling to the Caribbean and she doesn't want to risk infection. That would mean almost a month between cycle 1 and 2. I am currently stable per a CT scan last week so Femara is doing it's job right now and she doesn't think it's necessary to risk spoiling vacation due toinfection. Bone scan results are pending but she does not expect any negative change. We will see.
Joanne
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Waiting for my Xgeva injection right now. Tumor markers are up again. They aren't doubling, but making a steady climb.
Since they aren't going crazy up (20 points this month) and because hormonal treatments can take time to work and because the alternative chemo wouldn't offer me any survival benefit, I am going to stay the course for another cycle. Maybe scan after next cycle, will determine after seeing markers next month. Feeling a bit somber, but not surprised.
Hoping this is the right path for me and that I don't regret any of these decisions. Wish it was all easier.
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So sorry Hope that the news wasn't better. But it certainly could be worse. 20 points is really not that much and could be attributed to many things. After going down initially, mine did raise slightly (40 points). Then then went back down again and are now approximately what they were when I first started Ibrance. My onc also told me that the hormonal treatments take longer to work and that he wouldn't be concerned unless the markers rose for three consecutive months. I know the most difficult part is the waiting. Did your onc also recommend to stay the course?
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Hope, I think you're making the absolute right decision and I would do the same. I certainly wouldn't make any changes until you are scanned and at least you can still stay on the combo until you get a better idea if something is changing. When was your last scan?
I know it all sucks. Hang in there.
Joanne
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Sandilee, I met someone (at my cancer center) that told me she was taken off Faslodex due to elevated liver enzymes. There could have been more going on with her but it kinda scared me. I suppose I should check my sourcesfor credibility!
Joanne, Have a good time in the Carribean! Leave your worries behind, it sounds like delaying the next treatment will be okay.
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Thanks for the reinforcement. This was the 3rd consecutive rise in tumor markers for a total of about 45-50 points since starting this combo. Doesn't look good. MO agreed that staying the course made sense based on my quality of life goals and just that hormonal can take a while to start working. She mentioned how excited the other oncs are about this drug.
I left my appointment feeling ok, but I just took a little mood nose dive. just need to get past this and concentrate on the important stuff. You know, like which shoes to bring on my cruise!
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Vivian,
I think that she must have had some other issues. I had 63 Faslodex injections, most of them double, and no one ever even worried about my liver. I was allowed to have wine or any spirit I wanted. Faslodex doesn't get processed through the liver at all. I wish terribly that it hadn't failed me at the 5-year mark. Such an easy treatment protocol for me. And, the best part was it worked! I was NED for over 4 years. Hope this helps,
*susan*
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Hope really in the scheme of things, 50 points is not that much. When I failed on TDM1 my markers rose 300 points in three months. My onc is also very excited about Ibrance and has mentioned to me that if we initially didn't get the results with the Ibrance/Femara combo, he would add something else to the mix, before switching it. He is known to do unorthodox treatments and combos. Has your onc discussed that possibility?
Now on to the cruise. When are you going? I loved the Alaska cruise. Are you going from Vancouver or Seattle? I went from Anchorage to Vancouver and then stayed in Vancouver for three days. Yes you definitely need to worry about what shoes and what dresses to take. Please remember to take a warm jacket. I didn't and had to buy one on the ship. You'll need the jacket especially for the days at sea. Also walking on the glaciers was freezing and I wore gloves, bought on the ship also.
Dorothy
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I'm way behind on this thread, but wanted to say how nice those pics are, and congratulations on your little guy's big day, Hope!
My tumor markers are still going up, too, Hope. Glad to hear, pearlady, that yours went down, that's something that gives me hope, but if I'm honest, I'm still concened. After failing tamoxifen (fast) and Faslodex (about a year), if Femara/Ibrance is a non-starter, that will be about it for anti-hormonals for me. But it's still early days, so no use borrowing trouble, right? Fingers crossed for both of us!
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Yes, I think if we were seeing huge increases in tumor markers, I'd be the first one to insist on scans and a possible change in treatment. I realize the increases are not huge. However, I'm disappointed, and even a little worried about what this all means going forward.
She didn't mention any possible additions. I think I will shoot her an email asking if there is anything. The only thing I can think to ask about is adding Faslodex or changing from Letrozole to one of the other AIs or even tamoxifen. Just concerned that insurance won't cover any changes. Anyone have any ideas?
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