Ibrance (Palbociclib)
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Sonya, I just want to help you feel better about the possibility of taxol. In my case, I had manageable side effects, and did not feel that I was suffering. I rested more, but prioritized and kept up with the things that were most important to me. It was not a horrible experience.
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Shetlandpony Thank you for the encouragement. I wonder of Abraxane is better tolerated? Did you lose your hair?
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Sonya Dani was on Abraxane, yep she lost her hair. But the SE were not too bad.Doable.
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Yes, I did lose my hair.
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Just wanted to share a very encouraging quote I read this a.m. It was reportedly said by an UNC oncologist at the recent MBC conference in Philadelphia...
She spoke of the PALOMA 1 trial, sponsored by Pfizer, in which patients take a hormonal blocker with or without the CDK inhibitor (palbociclib, Ibrance). The survival data have not yet matured, she stated. "Part of this is because the patients are doing so well."
I don't know about you, but I think this extremely positive news!!!
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Deanna,
Can't thank you enough for posting info about this quote. My interest was so piqued that I started looking around online to see what I could find. Here's an article about the conference and link to the actual presentation by Dr. Anders. Her presentation is the third video down on the Living Beyond Breast Cancer site. It covers most types of bc, is quite interesting and definitely worth a watch. (It's about an hour and 15 minutes long.)
She even mentioned that she has seen a significant amount of hair thinning on Ibrance in their clinic -- more so than the trials alluded to -- something that we have been discussing here.
MomATT - There is also some discussion in her presentation about how there seem to be different subtypes of HER2+ cancer--which respond differently to drugs. I think you'd find this worth watching especially the mentions about various clinical trials.
Again, thanks, Deanna, for sharing this info with us. Dr. Anders described herself as a glass half-full type of person, and I was very encouraged by her. Couldn't have come at a better time for me. Thank you!
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Moissy yes, I clicked on the links and will be going to it. Thanks so much for thinking of us.
Deanna love the expression: didn't mature yet. That is fantastic news! Thx for the heads up about the article.
It happens to be, that someone did mention in another thread the fact that the cell could have different lines, and we did mention this to doc today, and he said he was just gonna mention this, that's why he is actually gonna be adding the Herc/Perj. But wait, we are still on for a tel. conference in the AM, once more, he wants to think if that is the mix he wants or Something else w Perjeta.
Then I happen to be doing more reading, and I found an article that says the same thing, they are finding that giving Herc/Perj or TDM1/Perj with Ibrance etc... could make a difference. And now from that article it's saying how there is different subtypes...Oh my, I am so tired, but I wanna be prepared for the call, maybe I will just wake up early and then watch it.
Hugs and have a great nt.
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Darn it! Well I do have a nice wig, but I gave all of my scarves away. I am not even going there right now. Ibrance/faslodex is going to work....it just has to! I am not giving up hope yet!
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Hello. I've been lurking on this board for a few months and now I need your guidance.
My mother was initially diagnosed with breast cancer in September 2011 after a routine mammogram and biopsy. She was diagnosed Stage IV three years after that. She finished Xeloda in October 2015 and was given Ibrance + faslodex in January. She started with 125 mg and took 3 before her platelet count went too low and stopped taking them. She took a few weeks off and then took 19 (of 21) 100 mg in March before they stopped her again.
Her recent MRIs confirm what they suspected back in January, but couldn't confirm at the time: leptomeningeal carcinomatosis (brain/spine). She is doing palliative radiation, but her oncologist isn't recommending further chemo.
That was my intro, and now is my question.
I have a full package (21) of 100mg Ibrance that is still in the sealed FedEx bag from Mayo. I don't want to break any laws, but it breaks my heart to throw this away when I assume it could help someone else. What are my options? I am happy to donate the medication. I also have the 18 125 mg, but I assume this is a little more murky in terms of being able to give/donate etc.
I appreciate any advice you have.
Thanks!
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My hair thinned-I think during months/cycles 3-6. But I've stopped losing hair (coming up on one year on June 1). It only thinned on top and MAY be thickening back a tiny bit. I wear ball caps and got a wig for dress up. It's not at all like taxol. But, I will say,it grows VERY slowly. My nails are fine. I do take biotin
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My hair has thinned by about 1/3, and my eyebrows are mostly gone. Mind you, I've never had lush hair or eyebrows, so it is very noticeable on me. I think that a lady with a lush head of hair and full eyebrows might not even notice.
I've been on Ibrance 125 mg/Femara since October, and my TMs have stabilized at about 100 ish, from 400ish as I was leaving Xeloda. The most persistent side effect for me has been fatigue in week three, joint pain from the Femara, and easily irritated mucosal tissue (dry eyes, rabbit nose, and delicate lady parts). I've never had to take a break because of low counts, even on 125mg of Ibrance, but that could be because I am a size 20 woman - more body mass diffusing the dose.
I really want this stuff to keep working a long time as it is very easy. Taking pills is loads funner than IV chemo, though I've done chemo and it isn't as scary as some make it out to be. In fact, I honestly believe that my doctor's choice to put me on weekly Taxol when I was first diagnosed is the reason I'm still alive. My stupid cancer cells were storming the joint, and Taxol put a stop to that.
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Deanna- The article was so encouraging! Thank you...41 months would be a gift.
DaughterJules- When I changed dosage I had the same question. I took it back to my onc during the next appt since he can dispense samples. So sorry about your Mom's condition. Sending hugs to you and your Mom.
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Hope this board has been quiet because we are out living life! Going on a weekend getaway here. Car travel is my hardest thing, but DH is great about frequent stops. Hope everyone gets some joy and relaxation this weekend.
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Kap, I hope we are all in this thread for many years and all we do is post to let everyone know that 48- turns to 96 and 96 turns to deceased due to natural causes of old age-
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Hi all,
I'm joining everyone here as I was switched from Faslodex/Ibrance to Letrozole/Ibrance yesterday after slight progression on recent cat scans. My oncol. and myself want to give Ibrance a fair shake as my oncol. said it was a toss up with Faslodex/Ibrance or Letrozole/Ibrance combo in January 2016.. Soooo, here I am. I'm hoping this will do the trick for me. I was on 125 mg. of Ibrance but that has been reduced to 75 mg. Soo, can anyone tell me what side effects they noticed, if any, when initially starting Letrozole/Ibrance combo?
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Deanna, Moissy I can't thank you enough for the quote and your curiosity. You guys gave me so much. This was really a spectacular presentation. She speaks so easy and to the point. I quoted her when speaking to Onco, he said like yeah... Anyway there is much more, but I really can't now. There is a lot going on. I just really wanted you guys to know. Beyond!!
Is it ok that I post the link in other threads that I am involved with that intertwine with this, I KNOW it could help so many?? I just didn't want to just take it.
We'll talk.
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DaughterJules, I asked my specialty pharmacist if Ibrance could be returned. She said it could if it was still in the original unopened shipping envelope. I would suggest calling Mayo's specialty pharmacy and see if they can take it back.
Best wishes to you and your mom.
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MomATT, I have no problem with you sharing those links, and I can't imagine Moissy would either. The more patients are informed, the more empowered we are. Sadly, not all oncs are as up on leading edge mbc research and tx, and that can sometimes make a big difference in outcomes. Share away! I've already shared it several places.
naturegirl, I hope the switch will give you great results!
DaughterJules, I'm so sorry about your Mother's situation. I know you came to this thread with a specific question about disposing of an unneeded RX for Ibrance, but I just wanted to say, I hope your Mother has had an opinion at an NCI-designated cancer center. I don't know if they can offer her anything other places may not have, but I am a firm believer in checking in with the best of the best in situations like this, which means MDAnderson, Dana Farber, ULCA, etc., depending on where she's located. Let me know if you need the full list. (((Hugs))) Deanna
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Mom - Of course, post the links. It gave me a real boost this week, and I hope it does the same for others!
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Hi
I need help I'm about to take this freaking Ibrance. I have a ton of questions are rushing thru my head.
I asked my onc's these questions already and the answer is a weight and see thing. Response.
Like how long do we take this. Is this a take it until you progress sort of thing. Does it escalate the cancer once you stop.
I have 3 nodes left side axilla tiny skin nodule met between my breast area sternum . I may have a small unresolved mass 8mm on the rt side which is superficial. But unable to classify.
I've had rads x 2 to the area no other active ds known.
Wtf. I still think it's regional. They tell me they are not taking surgery totally of the table.
I had a change in HER = her2- to her2 + to her2 - and now Her2 -
They only biopsied only 1 node. Wtf. Are they all that intelligent that they know!!!!!
I was told that I was borderline post menopause.
I wanted ovaries out. And they haven't taken surgery off the table what about infection.
Help talk to me . Please!
Sorry.
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Welcome funthing42. I hope Ibrance works well for you. I can only address a few of your questions. You do stay on Ibrance (I take it with letrozole) until it doesn't benefit you any more.
The main side effects are fatigue because of low blood counts. Yes, surgery would probably need to be planned ahead for when your immune system is at its best.
I was HER2+ (borderline) and took Hercepton & Perjetta; then had another biopsy, tested as HER2- and then started on Ibrance. There is a word for us borderline people, but can't remember it. I did not realize I could move back into + range.
I don't know anything about your other issues. My mets are all in the bones and I'm way past menopause.
This board is very helpful, supportive, and knowledgeable. Great ladies
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Thank you for the response.
I'm extremely new to any node envolvement. Very upset. I'm hitting my milestones to quick.
I think I will feel better . Just to many unanswered questions like tumor markers mine had been In the 17-22. Even thru the skin mets. And when first dx'd. They jumped to 33 4 most after rads. Then the did check them until 6 mos later. I guess they freaking assumed it was from the rads. Who cares ? It's only my life.
Now 66 ?
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I'm to angry. I shouldn't be venting but I'm so disappointed.
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I'm to angry. I shouldn't be venting but I'm so disappointed.
I feel like I have to be a Dr. As well , which is fine. as long as someone let's me know that they planned dropping the ball time after time and not trying other meds until now. Ibrance and faslodex. No tamoxifen. I feel like Im apart of a standardized care nightmare.
And we are being thrown into a shiny new regiment just to see how we pan out.
Cancer is individual not standard. To some extent.
They are just now looking at DNA etc. 2009 ha!
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it is completely normal to be frustrated and this is a good place to vent.
Many of us have had good results on Ibrance. I'm coming up on one year of use June 1st. My last scans were essentially stable. I will say that some people have had TMs beslow to react. Some even go up at first. The ladies on here with more experienced docs have shared that it we shouldn't give up on Ibrance too quickly. My own MO uses TMs + scans + pain to make treatment changes. TMs don't seem to always tell the whole story. And, in my case, it is the trend, not the actual number that matters.
Keep asking those questions.
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Thank you.😊
My mind was running a muck. I really don't want to lose my hair again.
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That link was just so incredible, I did not get to study it yet. And there is so much more. Thank you again.
Dani has had the past few days an earache, she was gonna go to the doc after the weekend, then since yesterday she has tingling in the face, jaw ache, earache, and some numbness on one side of her face like after going to the dentist, we went to PCP and he does not think it's the ear, they are thinking maybe TMJ?? Or to wait like 24-48hrs to see if it passes. Does it make any sense? Onco agrees, he says if it won't go away he would order MRI of the facial nerves, there is such a thing we learned. Could it POSSIBLY be Ibrance?? She is on the 4th round. It's so scary. Ladies, have you heard of such a SE? Latest MRI of the brain and Pet/CT did not show progression, there is ton of stuff unchanged. So it's a little weird that it could be actually something? Docs are perplexed. We are worried. Hope t does not get worse.TIA
Funthing it's very confusing to figure it all out...so sorry
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MomATT, the earache particularly doesn't concern me, but the tingling and numbness do. Yes, Ibrance can cause some unusual symptoms, and some women have attributed a Bells Palsy type of reaction (or muscle weakness on one side of the face) to Ibrance. However, Dani's skull mets might also be the cause -- not that they're worsening necessarily, but just that whatever inflammation is going on with them, including healing, can be affecting facial nerves. I think this is definitely something to report to her onc, especially if it doesn't improve on its own within a day or so.
Unless she's had an on-going hx of TMJ, I wouldn't look to that first.
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I have tender scalp and I don't think there is one time that I have gone to see MO that I don't bring that up. With that being said, I always worry it has something to do with skull mets. MO has assured me that a sign of skull mets is not a tender scalp but numbness in the face, headaches, and double vision. If they are going to do an MRI of her facial nerves, make sure they also include her skull. There is an Ibrance Group on FB where someone just had this numbness in her chin, and MRI confirmed skull mets.
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Hey Deanna hope you could feel my big hug!!! You know I feel like you are the mother hen (in a GOOD way), you know how she goes around protecting her little ones. XOXO
Onco knows about it, and does not know what to make of it at this moment. Sure hope it's a passing spasm?? She called her dentist, he is very good, she was there just a few wks ago, he did "cone mri" bcs she was having pain, and he said she was clear, but he is not in the office today (of course!), he will recheck tomorrow. No hx of TMJ. I know 2 ppl that had(has) Bells Palsy, out of the blue, very scary!! One got much better, one had damage!
It's nerve wrecking,but i guess we will wait till tom afternoon(hope in peace!) and then if it's still there, he will order the MRI of the facial nerves.
For some reason Onco's office is having a hard time in getting their act together to order the Herceptin/Perjeta, they need something called ICD10 and to speak with 3 different Insurance thingys and a medical director to explain WHY it's a good idea it could work on Dani's situation. I sent a kinda hmmm not nasty, but firm letter to all involved in the Onco's office, that it's not acceptable. We would like her to start tx asap. She is back on Ibr/Letr though.
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