Ibrance (Palbociclib)
Comments
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Simone- Add a woohoo from me for your NEAD status !!!!! Thank the Lord. Good thinking about any new meds, but NOPE no new meds for me. I have been on Ibrance for going on 3 years (this fall), so maybe that is it. I don't feel any different this month, but my numbers are just not bouncing back. I never bounce back too much-- 900-1000 after 1 week off-- but this month cannot get over 800. Waiting on MO call on what to do now.
Penny- In your pocket for your MO appt.
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Simone, that is great news. Very happy for you.
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Call from MO office--- going in for shot today and tomorrow. Zarxio-- biosimilar drug to Neupogen that my insurance approved. Maybe I just need a boost.
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Candy I pray it works well for you. In your pocket. It has side effects but worked for me in one shot.
Great news Simone
Tanya
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Simone, fantastic news!
Penny, keep us posted on your MO appt.
Candy, best to you with the boost!
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I just returned from the MO office and I will be leaving Ibrance/Femara for Xeloda. She is allowing me to take a couple weeks off all meds so my body can "rest" and I can enjoy the visit from my grandkids. This is ok as my cancer is a slow grower. It was great to spend 25 minutes with her and have lots of attention from an almost empty office. They are encouraging video appts and spacing our f2f appts more. I already have the news meds and my co-pay is only $10 so I am good to go. She tells me people love or hate the new meds so we shall see how I react. I will miss you all. I am taking a break from not only meds but this site once family arrives, although I will remember you in my daily prayers as always. A break is probably a good thing as my stress and blood pressure are elevated with everything that is happening right now. God bless you all! Chris
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IntoLight,
Glad that you got in to see your MO, and that you have a plan moving forward. Make sure you get the tips for Xeloda -- I think they've compiled some for that med, too, which could be helpful to you.
And enjoy your medication break! Also enjoy your family!
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IntoLight- Good luck with Xeloda. I understand the med break, and the break from here to concentrate on family. But come visit us again. Don't leave us forever. Hugs.
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Hey, my friends
Don't despair
I may be nuts
But you know I care
I had a Pet scan
On the twentieth of May
I didn't mention it
Because that's not my way
My one lung nodule
Continues to grow
But it's not a problem
The growth is slow
So time to announce
Something really nifty
I'm about to start
Cycle fifty
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Jaycee, thanks for the update. So happy you are on cycle 50--wahoo!
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Jaycee,
Your little poem brought a smile. Congrats on your 50th cycle! Wow!
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Is anyone doing Letrozole and Faslodex (fulvestrant)? Faslodex has been combined with arimdex and shown to improve time to progression. I wonder if both could be used along with Ibrance?
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IntoLight- Why Xeloda? Wouldn't the normal next step be Faslodex, with Ibrance or Versenio? Is Piqray an option? or a trial with PARP inhibitor & immunotherapy? can the cancer be analyzed by next-gen sequencing? I am respectful of all MOs, they have a tough job, but for the most part they are just following the standard AMA cookbook, and we all know where that leads. It seems also that they follow Xeloda with a steady steam of increasingly crappy chemo dragged off the shelf, so when do you get other targeted drugs and immunotherapy? Progression after chemo can be harder to fight, have you considered a second opinion about all this?
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Intolight good luck with the new treatment and enjoy the time with your grandchildren.
Jaycee congrats on reaching cycle 50. I am a couple of cycles behind you but have a scan at the end of June 🤞
Candy I hope that the shot gives you the boost that you need.
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Jaycee-Congrats!!!!!
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Jaycee, love the poem and the fact that you're starting cycle 50!
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husband,that is the combo I would prefer, just add-in Faslodex to IF on progression,
not only to deal with the endocrine resistance, but also Faslodex does not work instantly, it takes time to degrade ER, and the femara is still working on most mets
of course my onc said no, its not in the AMA playlist that she follows
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IntoLight, Hoping you feel ok (or good) on the Xeloda and it does it’s job for you. Please stop back and let us know how you’re doing some time. 🌻
Jaycee, Congrats on cycle 50!! I think we all wanna be like you. And great announcement mode too! 😊
Simone and Husband, Great news on the scans 🌻
Candy, I hope the shots are ok. 🌻
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Congrat Jaycee-Love your poem!
Curious-I appreciate your insight as to what might be a good alternative after Ibrance/Letrozole.
IntoLight-Best wishes for a good run on Xeloda and fun with your family. I hear you about the stress-feeling it myself.
Candy-Hope that the boost works well for you. How was your haircut? My eye doctor canceled because he got hurt in the protests.
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Cure-ious and Penny, thanks for the warm hellos, I never really left my friends. I keep check on all of you as I might one day be joining you again. I am doing well so far but as you all know so well, waiting for the other shoe to drop, the anxiety never goes away but it is less right now. My MO says when or if there's progression, I would probably use Faslodex and also Ibrance if needed. It's good to still have that option. I think it's possible to use Ibrance for awhile to put the cancer to sleep and then continue with the Letrozole if your cancer is slow growing like mine. That's what my MO agreed to try with me. He says he tells some of his patients about me to give them hope
Regarding turmeric, I'm still torn. Do any of you remember a discussion from several years ago in the beginning of this Ibrance thread about resensitizing the estrogen so Letrozole keeps working again? I wonder if turmeric would do that. I believe that there was talk of actually using a hormone to do that. That's seems scary to me.
Sending love and prayers to all of you,
Faith (in the future).
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Cure-ious, I hope you don't mind another question. Several months ago, did you post about the benefits of Celebrex to stave off progression? Am I remembering that right? If so, please do tell!
Jaycee, love the poem! And, better yet, the nifty fifty! Awesome!
Jack5ie, thanks for the info on tumeric. I'm more confused than ever but I know more too. :-)
IntoLight, I count on your coming to visit us here -- frequently!
Hugs to all, Penny
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Jaycee, congrats on cycle 50! That’s great! Just realized I would be on cycle 53 if I had continued on Ibrance as I started it in January 2016. Hard to believe it was so long ago.
Intolight, wishing you all the best on Xeloda. Not to muddy the waters or make you anxious but maybe you should consider a second opinion as Cure-ious suggests. I think you can start Xeloda and then possibly change treatments if that’s the opinion of another MO. This might be a good time to explore that possibility while you are taking a break and enjoying your visiting family. You are in my prayers.
Love,
Faith
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Jaycee- Love the poem and love that you are on cycle 50 !!!!!!!!!!!! You are an inspiration.
Chicagoan- Wow your doctor got hurt in the protests!!!! My haircut is great!!!!! Much shorter and feels wonderful. You know, that fresh haircut feel.
Ok, so this Zarxio is tough shit. I feel like I have been hit by a truck. Headache and body aches. Started 3 hours after the shot and not let up. I did not get Claritin. Should have. Going to do Tylenol and go to bed early. Another shot in the morning---oh my gosh. If my levels are crappy in the future, I want to hold Ibrance. I don't want this again.
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BevJen- Did I miss your post about how your doc appt went -- yesterday?
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Jaycee49–. Congrats on Cycle 50!!! Gives us all hope.
May you get another 50 cycles and 50 more, etc.
woot woot 🎉🎉🎉👏👏
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Chicagoan- Most people move from Ibrance-femara to some kind of Faslodex combination, often with Ibrance or Verzenio This is is why I am squawking about IntoLight, especially since she has responded so well to I/F, more than four years now, so why skip the Faslodex and jump to chemo?! Sure, Xeloda is a great drug & people can be on it for years, but what's the rush? We never know how any treatment will work, but she was responding well, and if you move to chemo the cancer may become more aggressive and not respond as well to cdk4,6 inhibition at a later stage.Maybe there is a good reason for xeloda now, but I would want to check on that, a faslodex combo would be easy to get and studies have shown that cdk4,6 inhibitors with faslodex are just as strong and work just as fast as chemo
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Candy,
Thanks for thinking of me when you are feeling so poorly.
I was supposed to have a video visit with my oncologist yesterday. For a variety of reasons (including incorrect scheduling on my next monthly visit by the cancer center) that video visit has been pushed to June 16th, at which time we'll talk about the three scans and whether or not to switch treatments (which is now becoming our monthly discussion). I have a telephone visit with my interventional radiologist on Friday to review only the MRI of my abdomen and my liver, but that will be a non-event. First, it's only a 15 minute appointment. Second, the liver MRI showed all liver mets stable -- no change from 3 months ago. So that's my only medical appointment between now and June 16, thankfully. As I keep saying to my MO, I fear the liver mets MUCH more than the bone mets or anything else, and those are stable for now -- next MRI for the IR will be in 3 months, I'm sure -- that's his modus operandus.
Candy, I hope you are feeling better soon. Sleep well.
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Hey everyone. I just read through the posts that I missed and there seems to be quite a few. So I just want you all to know that you are all always in my thoughts and prayers.
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Cure-ious, don't know the answer to your question but I will need to find a way to ask. Wish I had you with me when we met today... I know I don't have the "usual" mutations from my first biopsy, but we were trying to get a liver biopsy for further genomic testing but the radiologist said they were not in good spots in my liver, and my new bone mets are in bad places too. My oncologist does listen to me so perhaps I can just ask the question and see if she will answer me via email. At least it will get the ball rolling...
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Penny, I temporarily have dropped the Celebrex and waiting on more data before starting it again. One of several reasons I really like it is that it inhibits signaling through the PI3K pathway, and so I was using it to try to prevent any endocrine-resistant PI3K mutant cells from growing up and taking over. However, a paper came out reporting a paradoxical finding in breast cancer where taking Celebrex (or other NSAIDs) can make PI3K mutant cells change and become more aggressive.
I was discussing this with Luce, and she mentioned that she takes the i3C supplement to suppress PI3K cancers. i3C was shown last year in Science to be a very effective inhibitor of the tumor suppressor PTEN, which is very often down-regulated or relatively inactive in MBC. Taking i3C (which is a concentrated extract of broccoli and other cruciforms) strongly stimulates PTEN to inhibit PI3K. So for the moment I am taking i3C instead of Celebrex, but I am keeping a close eye on the literature for more information, because Celebrex is also a strong stimulator of the immune system, and is closely reated to the EP4 compound that KattySmith took in her trial, where she responded well to immunotherapy (And to date is the only person I am familiar with who did well with I-O as an ER-positive Her2-negative cancer) So I would for sure take it if I had immunotherapy. For the moment, I've got a stash on the shelf for later use.
Here is a link about i3C working to activate the PTEN tumor suppressor:
https://www.sciencedaily.com/releases/2019/05/1905...
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