Ibrance (Palbociclib)
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fight4two, I was taking letrozole alone, when that failed I went onto faslodex. Then faslodex with ibrance from march 2018 and hope to continue on it for a lot longer. Don't panic it took 6 months before my scans showed any change for the better.
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cross posting.
I didnt tell you all but had a feeling my treatment stopped working due to my itching skin condition coming back and pain on my liver. My MO ordered a MRI I went today.
Ibrance has failed me. All my 3 tunors have grown and there is a new lesion. I have to now get a PET and see what treatment.
My husband and I are devestated and I am not gonna lie I am thinking I wont even make it 2 years. I'm gonna go bc I am sobbing.
Thanks for listening.
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I am so sorry to read that Nicole. There are many options after Ibrance. Don't lose hope. You are in my prayers.
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Oh dear Nichole, I am so sorry. I know it's hard but try to stay positive. As husband has said there are many treatment option for you. Now you get that two years thoughts right out of your mind. There's no way you can know that. I hope your Pet scan will give you answers for your next treatment. Think positive. A great big warm hug.
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oh Nicole, I am so sorry to hear your bad news. There are many different treatment options and maybe one of those will kick butt. Look at Goldie, she has been on madam x for a long time, I think over 4 years. Don't lose hope. Big HUGS
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Nicole - I will hope that the next round of meds is going to be the one that puts you into a more 'stable' position. I would be sobbing too, each setback hurts all of us. Know that we are here and sending all our best positives to you and your family too, as I am sure they feel 'setback' as well...janice
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Nicole - I am so sorry to hear this news. I will be sending all of my positive energy your way. There are many options after I/L and I hope that you find the right one quickly to put your mind ease. Keep putting one foot in front of the other - we are all right behind you.
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Nicole I know how frightened you were that this might happen. We just talked about it last week. I'm so sad for you but only because I know how upset you must be. You have treatment options. Ibrance isn't the only fish in the sea and your doctor will help you find a treatment that will work for you. Just don't even think about giving yourself a time frame - you have no idea about that and you have so many options left! I know it's just hard becuase it'd be so much easier if Ibrance would just be the one that works long term. Big hug.
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To all...THANK YOU..Thank you so much. I am little calmer now. I wanted to share with you that just this week I had met someone on FB that told me that Ibrance failed her at 7 months and that her MO said it made her cancer grow more!!! She went to just Letrozole then....and was better. I was shocked...I was thinking ..NOO that can't be right..but then another person chimed in and said her doctor wont even prescribe Ibrance because that happened to a couple of his patients...I was still like no way. I am thinking now that I am like them and that must be how my body responded but here is the weird thing...I had Foundation One done in April...and it said my tumor would respond well to Ibrance. So now I am wondering if the Ibrance failed...or the Letrozole,...or the Faslodex... I mean how do they know which is the one that failed? Either way...for me and my husband the scariest thing of all right now and what is making me cry and be so scared is that since my PET in August another tumor has grown...that is only just over 1 month...that is bad.
Whats next do I ask for another biopsy and Foundation 1 ?? DO I ask for them to check the HER2 status?? I just don't know.
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Nicole, I am so sorry to be reading this. My heart goes out to you.((HUGS)) I know how you are feeling completely. Remember, I, too, failed on I/F at only three months on the treatment. In fact, I think it stopped working for me one month into the treatment. But while you may fall into a hole of despair, may it only be for a few moments. There are other treatments out there that may be better for you. I am NED on a different treatment. Woo hoo! And like you said, maybe it was Ibrance causing the issues. I would definitely get a biopsy on the new tumor and find out if it has the same characteristics as the initial diagnosis. That's how I found my tumor became triple negative. (I'll have to remember avastin, Pat). Again, hugs to you and your family. We are here for you.
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Holli thank you. I am writing this stuff down..to ask for a new biopsy on the tumor to find out if it has the same characteristics. Do they not normally suggest that?
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I'm so sorry Nicole, but I am just going to reiterate what everyone else said. There are so many meds out there now, so don't lose hope. Easier said than done, I know. But hang in there. (((hugs)))
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Nicole I’d be crying too. Maybe even kick a hole in the wall and then get up and fight. Gentle hugs dear. Praying for you.
All good advice.
Tanya
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Nicole, I'm so sorry about your bad news. Praying for you!!
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Nicole, I send my support and prayers with the others. Sorry to hear this news and I am crying with you. But also glad there are other treatments waiting for us when we need it. You are special to us and we are here to support when needed
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Nicole, I want you to put your arm through mine and let's start on the next leg of this adventure together!
I got my PET/CT results and I have progression with a new suspicious place in the soft tissue next to my sacrum. I'll have an MRI to try and figure that out next week. I have increased uptake on a few vertebrae as well. I'm not looking at this as a failure but a nudge that it's time to change, realizing that Ibrance and I might dance again someday (according to my doctor!) We've had 3 years almost to the day!
I've long thought a PARP Inhibitor was in the cards for me so my oncologist and I are seriously considering Lynparza. (Another option to him because of several recent patients' success is Halaven.) So, Holly, I may be grabbing you by the other arm next month!
Nicole, in the meantime, I'm taking a long-needed break from treatment and plan to spend lots of that time in prayer for you and others who have not failed anything at all, but are moving on to treatment better suited to you. The options are many and more are coming!
The God who made us knows the plans He has for us. Let's just breathe and get ready for what's next. Cry when you need to but maybe set your timer so you know when you're done!
Much love from PatGMc who has no intention of moving to any other thread. You and me, baby, we're stuck like glue!
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Pat, Nicole and Holly, I’m sending lots of love and calm breaths as you wade in the uncertain place. The great news is you’re still early in on this with lots of treatment options. Once you have a plan, I know it will feel less uncomfortable. We’re hanging with yiu
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Oye, three progressions just tonight!!! I think the 'guidance' we are getting from the MBC field (in general; specific oncologist can be very good) on what to do upon progression is stunningly limited. Yes, there are many treatments floating around, but very little information on how to choose one, other than just try it cold-turkey and see if it does anything. Most everything has a PFS of 7-8 months, at most, and many have not been tested in patients previously treated by I-F. At least its super-helpful to have this board, where we can hear various recommendations and learn about testing.
Nicole, your testing indicated that the cancer should respond to CDK4,6 inhibitors, so that must have meant you have high levels of Cyclin D1 or CDK4,6- therefore, unless or until you get new testing showing that the cancer acquired new mutations that would make it resistant to a CDK4,6 inhibitor (like Rb mutation or high levels of CDK2), you can assume that it is still sensitive, and that what failed was the cancer has become endocrine-resistant, and the most common way that happens is by ESR1 mutation.
If that were the case, then Abemaciclib (which can work alone and not depend on estrongen inhibitor) in combination with a SERD might be a great option; the SERDs are showing good activity against ESR1 in clinical trials.
Just the stress of all of this is horrible, the stress of choosing, the stress of waiting to see if its working, etc
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Nicole- I am so sorry about your progression- it is a gut punch that is scary until the next plan is settled. Even with lots of information it is hard to know which medications will work- but, many will. I went through it about 9 months ago and so far am doing well on AA with fewer side effects than Ibrance.
I still feel like right around the corner is the triplet that will make MBC a chronic manageable disease. In the meantime I do like cure-ious’s idea of the Abemaciclib and faslodex! Whatever you end up on- someone on these boards has been there and can help
Wishing you serenity
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Pat, sorry to hear about your progression. I hope next line of treatment will work well for you!!
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Thank you Pat, NKB 42young and Jen.
Cure-ious I am not sure what SERD's are but is that Faslodex? If so you know I was one that right? I don't know if they plan on stopping that too or what?
I did get a brief email from my MO at Columbia...here is what it said....
Hi. Im sorry.
I think it is unlikely that there has been a change - it is very unlikely to go from her-2 negative to positive.
It is hard to compare MRI to PET - the MRI always sees more.
There was nothing obvious on the foundation testing that would clarify a targeted therapy - usually if there is a worsening in the liver we would give chemotherapy.So I am thinking that she will be suggesting chemo to the MO here.
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On the statin issue - my MD lowered my Lipitor when I started the Ibrance, because the Ibrance increases the effect of the statin. In the past few months, I've had increasing muscle pain and am now walking with a cane to maintain my balance while I try to favor the side with the most pain... After reading that article, and doing some research on my own, I've decided to only take my statin every other day. It has a long half-life, so my husband (a former pharmacist) thinks it will still be just as effective without further reducing the dose. I have my bi-annual bloodwork to check cholesterol levels in December, and will know then if my little experiment worked...
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WOW! Pat and Nicole - I'm so sorry to see these progressions. Although I'm sure we all recognize that hormone treatment doesn't work forever for Stage IV, it's awfully sobering to see it stop working for specific individuals. This certainly personalizes the data we've shared about time in months that patients are progression-free on Ibrance/Letrozole. I wish you luck on whatever your next treatment alternatives are.
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Nichole
When I was on I/F it worked for two months and then stopped. My ONC did order another biopsy to see if anything had changed. In my case, nothing had changed. I asked my ONC why did it stop working. She shrugged her shoulders and said" that's the nature of the beast".
Remember, chemo doesn't always mean IVchemo. There are other options. I'm praying for you dear.
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Well shit. Nicole AND Pat AND Holli. BLMike said it--sobering to see progression in specific individuals even though we know it is coming at some point. Cure-ious- I agree it is frustrating to say the least that plans after progression are not clearly defined. And 7-8 months PFS is scary to say the least.
I have my scans coming due in a couple of weeks. And my TM's have slowly, steadily risen for the past 4 months. Getting kind of creeped out.
Nicole, Pat, and Holli--Keep us updated and stay posting here, or I will find you wherever you go.
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PAT sorry to hear of your progression. Love your attitude. Thank you.
I have to add I am blown away by all the support on various threads when someone progresses. I will carry that with me for when its my turn. Very powerful.
Gail Mary
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Nicole, listent to Shetland, she's got the perspective from experience- she even calmed me down just reading it! SERDs are the newer faslodex-like drugs, but are supposedly stronger (and pills, rather than shots) I forgot you were already taking faslodex with the letrozole- which is unusual and maybe suggests that your doctor suspected that the cancer could already be resistant to anti-estrogen therapy ( maybe based on whether the recurrence happened when you were already taking an AI?).
How does the cancer get resistance? One way is it acquired a mutation in the estrogen receptor (ESR1) that allows it to be active and turn on genes even if no estrogen is around (called a "constitutively-active" mutation). Alternately, it may have turned on a different pathway (PI3K, FGFR1, HER2, etc) for growth. In those cases where the pathway is known, they add another drug (like Piqray to inhibit PI3K) to inhibit the pathway and force the the cancer to go back to using estrogen, and then mix it in with I-F to block the estrogen pathway again. For ESR1 mutations a CDK7 inhibitor and some of the new SERDs are very effective, but these are still in clinical trials).
If they suspect endocrine-resistant they usually use Xeloda to make sure they control the situation before trying other things.
If they do that, maybe ask if you they can add Ibrance (or Abemaciclib, which is stronger) to continue hitting the CDK4,6 pathway? Because if the Foundation One report indicated it should work, its likely to remain true- you weren't on Ibrance long enough for resistance to develop!
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Ciaci, I have been debating doing exactly that, alternating the statin to every other day, follow my monthly bloodwork to see if it even affects cholesterol levels..
PS- I've had four PT sessions thus far and the response is miraculous!! They do massage and manipulations, which showed the pain/damage is so much more extensive than I had realized .
In many states now, depending on insurance, you can get up to 12 physical therapy sessions even without doctors orders. They say mine is not traditional frozen shoulder, and should resolve more quickly than those cases do, could be statin or hormone imbalance, but could also be lack of activity and getting older...
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Pat - so sorry about your progression. I was wondering about you, as you have been quieter than usual. I was stalking you some. Sending you good MRI vibes. I know you will get a great a great treatment plan. Yes, PLEASE, stick to this thread. You, too, Nicole
Thanks for all the well wishes - but I progressed 4 months ago after being on I/Faslodex for 3 months. I have been on lynparza for 4 months now and it seems to be doing the trick, until my mind starts playing tricks on me and I become a hypochondriac. Stupid cancer.
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Holly, is there a PARP inhibitor thread? They are finding these drugs are helping even those without BRCA mutations (and are making progress on identifying markers that predict a response to PARPi); they are potent drugs that hopefully many of us might respond to!!
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