Ibrance (Palbociclib)
Comments
-
Susan - This is the current, standard, hormonal sequence for ERPR+ HER2- breast cancer, taken from bestbird's guide.
- First line treatment may consist of a combination of either Arimidex and Faslodex (500mg), or Letrozole and IBRANCE
- Second-line treatment might be a combination of either Faslodex (500mg) and IBRANCE, or Aromasin and Afinitor.
- Third line treatment could be Tamoxifen and Afinitor
- Fourth line treatment, which is a single agent, may be either Toremifene (Fareston), Estradiol, Megestrol Acetate (Megace), or Halotestin (Fluoxymesterone)
How you navigate through that list is very individual based on how the cancer presents. Oncs tend to switch you to chemo if the progression presents as aggressive, even if you haven't exhausted the hormonals. However, if the cancer is just kinda plugging along, most oncs will keep working through the hormonals.It is tricky to figure out if hormonals are still going to work. Women who have developed the ESR1 mutation are typically resistant to hormone therapy. I have seen papers that say that when you become PR-, you are likely hormone resistant, but I am PR- and responding to hormonal treatment. In general, it seems like oncs just try the next hormonal if the cancer is not too aggressive.
After you've gone through faslodex, letrozol and ibrance, the next step in the standard of care, as far as hormonals are concerned, is Aromasin and Afinitor. Last year Faslodex and afinitor had a good results in a clinical trial and so that put another option on the table.Some oncs don't like to recycle hormone suppression drugs, but yours seems fearless in this regard. I think it's a good idea. Since you've been an exceptional responder on hormonals, you might find your onc offers you faslodex and afinitor. If not Aromasin and Afinitor are probably the next step as far as standard of care. BestBird lists Tamoxifen and Afinitor as an option as well.From what I have read, I am going to skip Afinitor. There are many well researched, smart people on this board who have chosen Afinitor and many who have done very well with it. My gut feeling, for myself, is to avoid it. It's a tough drug, the overall survival numbers came out recently and they show no benefit to Afinitor. But that's just me.
The problem is that if you skip Afinitor, you are in uncharted territory as far as hormonals. And that leaves you with chemo if you want stay on the standard of care. Most people seem to go from Faslodex/Ibrance or Aromasin and Afinitor to Xeloda. Doctors generally skip to Xeloda without exploring more hormonals. Xeloda is a proven, effective and well tolerated oral chemo, so I understand the strategy.
However, if you've been getting years out of the hormonals, it would be worth exploring the fourth line hormonals that Bestbird lists. I am particularly interested in high dose estrogen which was the original treatment for breast cancer. It seems that 30% of the women who do high dose estrogen respond and many of them regain sensitivity to hormonal treatment.
You can also try to lengthen your run on hormonals by combining hormonals with new CDK 4/6 inhibitors like abemaciclib or by adding various HDAC and PI3K inhibitors to hormonals or hormonals plus CDK 4/6 inhibitors. The PI3K inhibitors seem to have the ability to re-sensitize cancer to hormonal therapies. There are innumerable trials along these lines, but the Sandpiper Trial is a nice phase III trial that even the most conservative onc on my team can readily embrace.
You won't be able to do the trial since you've already done faslodex, but if you can hold out on ibrance until one of these next generation PI3K inhibitors is approved, then an interesting option for you might be to combine one of them with tamoxifen or exemestane or some hormonal you haven't tried.
Abemaciclib is also an option to combine with one of the hormonals you haven't done. I am confident it will be approved before ibrance fails you. Even though it has shown promise as a singlet therapy I would try it with a hormonal or one of the PI3K inhibitor. In general cancer needs to be cornered by multiple attacks to be controlled.
There are immunotherapy clinical trial options available to you now. The safest add well tested, FDA approved, immunotherapy treatments like the PD-1 inhibitors Keytruda and Opdivo to FDA approved hormonals now or chemo down the line. Unfortunately they are are still getting very low response rates from PD-1 inhibitors in ERPR+ cancer. I expect they will figure this out with time, so personally I am pushing PD-1 inhibitors off as long as I can.
There are a bunch of CAR-T and Tumor Infiltrating Lymphocyte trials that I will look at very seriously once I have COMPLETELY exhausted the hormonal treatments. CAR-T and TIL immunotherapies don't seem to care if you are ERPR+ or not, so I'll be looking at these before the PD-1 inhibitors. The TIL and CAR-T trials are very dangerous for late stage patients with high tumor loads (those are the patients that generally have serious events, including death) so I won't wait too long. Immunotherapy is really the only treatment that can give you complete remission. Unless a miracle occurs in the next few years, I'll be doing some kind of immunotherapy before the cancer is very advanced.
When you are plotting out your path through all this, it is important to keep in mind that many treatments, including any of the chemos, can resensitize cancer to hormonal therapy.
My gut, looking at your fabulofantastic run on hormonals (wow!) and your lazy cancer (yay) is that your winning strategy is going to be milk everything you can out of hormonals ... cycle through every possible hormonal, add HDAC and PI3K inhibitors to lengthen your run, increase sensitivity, come back to them later after you've been on chemo.
Sorry for the long response. The short answer is that your next step, since you've done faslodex and letrozol, is Aromasin and Afinitor. Once that fails you, you are off hormonals and targetted therapies and you dive into the 9 lines of chemo, the first of which is typically Xeloda.
If you choose to jump the fence, there are other reasonable paths. If you prefer the standard of care, you are in good company and you will have an increasing number of options.
It's all good.
>Z<
0 -
Thanks for the list. I bet just 2 years ago such a list would be much different. And two to three years from now it might be much longer. Just a few years back my wife's first line of defense was A/C + Taxol (No Taxol for my wife though she was horribly allergic to it). "Gulp!" PET Scan tomorrow.
You and John Smith seem to be the breast cancer "dynamic duo."
My wife's condition.
0 -
Susan R: My oncologist said he now starts everyone on IBrance 100mg for Quality of Life reasons and that everyone has done well. I was scanned after 3 cycles and had a remarkable response. I'd recommend asking for the 100mg. Good luck to you!
Z: You are an amazingly generous and wise sister-survivor. I thank you for the time you took to give us life-saving information on future treatments..
0 -
There is no hard evidence that the higher dose is better. I don't believe that the people who dropped their dose in the clinical trial did measurably worse. The dose you actually get depends on how you metabolizes the drug, which is very different from individual to individual. Basically you want the highest dose you can handle, as far as side effects go. But QOL and maintaining overall good health is essential for staying in the fight for the long haul. It's not about soldiering through side effects to stay on a high dose. It's about optimal health.
My scalp/hair roots hurt so much today I can barely touch my hair. I have been sick and not exercising and I think the drug metabolites build up in my system when I don't move. I need to get moving, but even so I am contemplating a drop from 125mg to 100mg.
Mike - one would like that damn list to change every year. It was disappointing that we got no new treatment options last year. That's why I dig into the trials ... we need more options. They are not getting out fast enough.
That said, there is a lot of progress in how we use existing drugs. Chemo dosing and side effect management, for example, is so much more sophisticated now that people live pretty well on chemo. I am not one to follow the standard of care blindly, but chemo is not something to dismiss off hand at this point. Taxol is a good example as they have figured out how to manage the allergy reaction.
Oof. I wish they would find the damn on/off switch for this disease. Too complicated.
>Z<
0 -
I will be starting Ibrance soon. I am just hoping it's not too late. My Mets are in my peritoneal, stomach, intestines, spine and skull. I just did 11 rounds of Taxol and 2 of A/C. It seemed like it was working but this last tumor marker test it went up 34 points. The radiologist said I had the same amount of cancer as the previous scans but it looked less angry. Any helpful hints to get started will be greatly appreciated. Also do you lose your hair on Ibrance? I am just starting to get some fuzz back
0 -
Z -Sorry you are not feeling well. Hope you are back to your Energizer bunny self soon. I'm inspired when I hear your encouragement to keep moving. Feel well soon.
0 -
For those who are concerned about being dropped to lower dosage, I was dropped from 125 to 100, then 75 due to low neutrophils. I was not happy being dropped, but it was still effective treatment for me. My CA 27-29 markers dropped from nearly 1100 to a low in the 80s at one point although they have been on the rise again in recent months. It can still be effective, but you do want to be on as high a dose as you are able to tolerate.
0 -
Dianarose - watch the scans not the TM's. A move of 34 is small in any case. Radiologists are worry warts, so that is a very good radiology report. I am not losing hair, but about 20% of the people who take Ibrance do lose hair. Welcome. The main advice I have for managing side effects is to exercise: move, move some more and then don't stop moving. Probably not what you wanted to hear after 12 rounds of taxol, but it works.
Moissy - Thank you for thinking of me. I was able to run 3-4 miles around 4pm today and my scalp pain is gone. I am a little sick with a bug and that makes it hard to exercise, especially aerobic exercise. But when I don't exercise it's a downward spiral for me on this treatment protocol. I get sicker with side effects on top of whatever bug I have and then it's harder to exercise. And the SE's become more terrible. I did nothing yesterday and this morning and I swear my scalp was on fire this afternoon. Went for a run and did my yoga and mostly the SEs are gone. I can't stress enough the difference exercise makes in staying well on this stuff. Not saying it is easy.
>Z<
0 -
Thanks for the summary, Z. So my order is this: Tamoxifen (stage 1 fail after 2-3 years), letrozole + Ibrance (stage iv; 2 years), Faslodex + Afinitor (current), Aromasin + maybe a second drug, whatever gets approved or trialed (this is my guess for next hormonal). I believe in dual therapy for me as the cancer seems somewhat aggressive despite the grade 1 and 2. Maybe there will be a chemo next if/when the current Fas + Af fails, or maybe liver radioembolization if the mets stay just there. And then aromasin later when I need something easier and the cancer has been off endocrine treatment for a while. Also would like to get a biopsy in here soon, either traditional or liquid. Wondering what the easiest chemo is that does not have Xeloda's hand-foot syndrome, as I must dance.
Hello, Dianarose. Hair loss is not a typical Ibrance side effect. The letrozole seems to cause some thinning sometimes. Ibrance is a different sort of therapy than you have had, so maybe it will be just the thing to get those markers down.
0 -
Z - I did forget to mention that I was on Tamoxifen for 5 years following my initial diagnosis of Stage 3c. My Stage IV Bone Mets were diagnosed 6 years after my initial diagnosis and that's when I started Femara. A biopsy of the bone at that time gave a status of ER+ / PR- / Her2-. Would having taken the Tamoxifen then make a difference in the line of future treatments?
Thank you by the way for your generous sharing of information!
0 -
- Dianarose
I have just started my fourth round of ibrance 125 mg for a few mets in pelvic bone area, and I have little side effects. I have a thick head of dark hair that also started fuzzy. It took a while to finally grow, but when it did it came in pretty darn good. I also take a hormone blocker along with it. When I saw my oncologist he didn't even talk about blood work numbers. Just said they were fine and well within a good range. I was considered stable. I'll take stable. I also have monthly shots of XGeva. Holy Hannah!! If any of you are having problems with this shot take Claritin two days before the shot and continue two days after. That shot can cause bone pain that can get pretty severe in my experience. Groin pain , back pain, arm pains, shoulder pains and just an overall feeling of sickness. Shortness of breath! Can be quite scary. Flu like symptoms and general ill feeling. Taking Claritin really helps a great deal. I learned this from my oncology assistant nurse and it worked with nulasta as well during the heavy chemo. It really worked for me.
I hope if anyone is suffering with that like I did, that it helps. The symptoms came on within 48 to 55 hours after the shot . Get rest and fight well!!
0 - Dianarose
-
Susuan
In theory you don't recycle treatments once they have failed you, but there aren't very many data points for people who have been on hormonals for 15 years. The cancer you had 10 years ago may not be what you have now. So I can see your onc trying tamoxifen again, especially in combination with another new drug.
PR- should indicate that you are more likely to be resistant to hormonals, but obviously that is not the case. I am PR- and stable on hormonals so far, so no hard rules on PR- hormonal resistance, apparently.
Also, bone biopsies have a high rate of error, relative to biopsies of other organs. The hormone status can change somehow during the procedure. Yay. More uncertainty there.
In the end it seems that we take drugs and see if they work. Fortunately, the milder hormonal drugs control your cancer. Since your cancer is not super aggressive, you have the luxury of strolling through the different hormonal and targeted therapy options (CDK 4/6, HDAC and PI3K inhibitors). You just want to be aware of them all so you can ask your onc about the treatments and trials available.
However, the way things seem to go for you, you will be on Ibrance for another 5 years.
>Z<
0 -
Micmel- I am glad you mentioned Xgeva- I got the shot last week and a few nights after I woke up several times short of breath. Was scary. I will be taking a hormonal blocker as well. Not sure which one. MO is trying to get me in a trial with a new drug. She said I might now qualify because I had two rounds of A/C but then when my tumor marker started to climb after 11 rounds of Taxol she said it might be enough to get me in. Will know on the 23rd. When you say it was awhile for your hair to come in what time frame? I always cold now. Really want my hair back. Hate wigs and 🎩. I am going to try the Claritin next time. Thanks for the tip.
0 -
Hi ladies - I had some tough SE's with Ibrance at @125 and switched after round #6 to @100mg. Much less SEs, but fatigue is still the baddie. I've had a few mouth sores again lately and am swilling Biotene mouthwash. I wish it came in Stoli-Vodka flavor. lol As to hair loss, about 22% of us have it, including me - please see my earlier posts about using hair halos. I am still working full time and moderating a panel in LA today. Z - feel better, I know walking helps me. FYI I am now down about 10 lbs since starting my MBC journey, and all my jeans fit. Doubt the weight will return, unless my onc revisits any steroids. grrr
0 -
Just curious what is the longest someone on this thread had been on Ibrance with success?
0 -
Dianarose
I was beyond worried every morning in the mirror. Asking anyone who would listen is that a hair? how about that? I had just finished my heavy chemo of ac/abraxane and it did a number on my hair. I would say overall to get where I am now it was at least three months. I specifically asked my doctor flat out. "You promise me I will get my hair back?" He said, "nothing I have given you will cause your hair to be lost." Luckily for me , he was right. I was also worried because I had read the literature And it said it could cause that. So far I am ok with the hair. When I saw myoncologist last, he made me show him my hair and smiled during, He said that it was growing so much. I am right sick ofthe hats and cold head, it drives me nuts. I'll pray you'll have success as well! I have read that ibrance can succeed for years if it works , I'm praying we all have that chance. Together
0 -
Thanks Micmel-our youngest son graduates in June and I really didn't want to wear a wig. I have been in such a dark place but I think I can pull myself up. I did start an antidepressant a month ago and I do sleep better and have more of an appetite. I was on a liquid diet for months and it about killed me. So thankful I can eat again.
0 -
I've just joined this site and am so thankful for all your upbeat comments. Just started ibrance 5 day ago. (Needed proof it was the same er+cancer) Been on femara for 3weeks. Guess it's nice to test out 1drug before going on the 2nd. Talked to triage nurse before getting ibrance. She made for some restless/anxious nights with all the side effects. You ladies have made me less anxious. Sounds like this can be doable!!! Thanks to all and the best of results to all...
0 -
Dianarose,
20 months , relatively easy, good luck
Kathy
0 -
Dianarose I know what you mean about the dark place, that is a feeling I am sure we all have here at one time or another
My youngest son graduated in June of 2015, I was diagnosed in Jan 2016. Seems like I was walking along fine and one day someone pushed me into a hallway away from the other person i used to be. I couldn't find my way back to my real life. Somedays still it doesn't seem real. I am thankful my two children aren't sitting in their high chairs eating peas with spoons in their Chubby little fists. His girlfriend graduated last year 2016 , I had to face the public with the cap. Of course I knew people looked, I also looked around, I was the only one wearing a cap as far as I could see. I have had many why me moments. Those go from sadness to anger. They do not call it a battle for nothing ! I pray your hair is on it's way! That Is my wish for you!
0 -
Dianarose, 22 months for me and doing well
0 -
you ladies are so encouraging. Thank you
0 -
Well, I'm saying goodbye to Ibrance/Femara after only 6 months. It seems like it did not work at all, according to my scans. I will be starting Doxil soon, and will need to get a Port (they won't give it without one). I guess I've been fortunate these past 12 years, going without one. Nervous though, about having one.
Good luck to all of you! Hugs!
Lynne
0 -
Pinkpunk-
Welcome to BCO! We're glad you've joined us, so that we can support you on this journey. We're thinking of you, best of luck with the Ibrance!
The Mods
0 -
Lynne
I hope you get some good results from the new medicine. I will tuck you into my prayers and hope that you'll find what you need. I have a port, I have to admit at first I hated it , I actually call it my third eye. But I have problems getting drawn blood because my veins are thin and collapse easily, went through terrible pain until they would draw labs from this port every time. It honestly does make it less painful, just use your cream , lidocaine cream to numb the access area prior to being accessed. The surgery was pretty easy and I had no complications or problems. It took some getting used to but now I can sleep without even knowing it is there. I will have had mine for a year in February. I don't think it looks like I will ever be without the port now for the rest of my life. I guess for precaution, and the possible need for more chemo and or treatments. So in ways it has helped me. I will also always need Labs drawn. You will be sore after for a few weeks. Please try to take it easy and be kind to yourself. Please keep us posted on when your surgery is set! Stay strong! We all must together.
0 -
Welcome Pinkpunk. This is not a walk in the park, but it can be one of the easier treatment. And everyone is different. Don't read too much into the statistics or what happens to other people. I am sort of middle of the road in terms of side effects Most of my side effects come from the letrozol. I call it the F@#King letrozol. Hate the stuff. Ibrance itself can be very mild in its side effects. Regular exercise is the best way to reduce side effects.
Goodbye Lynne - I am glad you have your next step lined up. Makes all the difference. I hope the port is a breeze and the chemo knocks your mets to the curb.
>Z<
0 -
Regarding PR-negative and endocrine therapy: Zarovka said, "PR- should indicate that you are more likely to be resistant to hormonals, but obviously that is not the case. I am PR- and stable on hormonals so far, so no hard rules on PR- hormonal resistance, apparently." From what I have read, PR-negative may indicate resistance to tamoxifen, but not necessarily resistance to other hormonal therapies such as the aromatase inhibitors. I have noticed that older research in particular will say "endocrine therapy" without saying what kind, and in some cases I think tamoxifen is meant. Later is was recognized that in some cases a cancer may resist tamoxifen but not letrozole, and so on. Thus, high-risk premenopausal early stage women are given ovarian suppression and letrozole, rather than tamoxifen, based on the SOFT trial. And there are studies of post-menopausal women with ILC that show better results with letrozole than tamoxifen. All this may be tied up with the whole luminal A vs. luminal B thing. Also, as cancer morphs from early stage to metastatic, it changes, and tamoxifen may work better at a later time. So, the topic is complex.
0 -
Lynne: You are going to love that port! I've had mine since 2012 and I've told them they'll have to chase me down to take it from me. The insertion went off without a hitch and the sticks are barely felt. I wish you the best with Doxil. I remember a drug rep showing me a CT scan taken right after a patient received Doxil. It showed that the Doxil lit up right in the metastatic spots. So you just picture that Big D seeking out the spots and taking them out one by one! God bless you.
0 -
pinkpunk: They have to give you a list of every side effect ever reported even if it possibly had nothing to do with the drug. It can scare the wits out of you! I started IBrance (100 mg) in September and my only side effects have been fatigue and some mouth sores for which I ate Stonyfiend Yogurt (almost instant cure!). I can't wait to hear your great results in about 3 months! My best to you.
0 -
Zarovka- I used to run like the wind. 6 miles at least five times a week. The chemo knocked me down and I am battling some neuropathy in my feet. How did you keep moving, when all you want to do is sleep? The fatigue is terrible. I was in the best shape of my life and the day I was diagnosed I ran 5 miles that morning. I just didn't feel sick , other than a pesky on and off painful lump.
I would love nothing more than to get back to the way I used to excersise. I have mets in my pelvic area only, nothing else any where else. The original tumor has been removed. I do take 125 mg of ibrance and hormone blocker anastrazole , another problem I deal with is lymphedema, another side effect from a mastectomy and lymphnodes removed. Chronic thing.
I think it's great that you suggested excersise. I'll see if I can take a few more walks each day and start to work my way back around again! Thanks for the motivation!
God bless!
0
