Ibrance (Palbociclib)
Comments
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Shetland, I have a notion to go all crunchy old mama on you and teach you something cosmic that I have learned about decision making. Can you leave the land of research abstracts and lab coats long enough to impersonate an enlightened hippie for just few minutes? (You know you want to.)
So it goes like this...
A couple of years ago, I heard a life coach teach an incredible bit on learning to tap into your body's storehouse of self-wisdom. The seminal idea here is that we now know that many parts of the body other than the brain are loaded with neuronal (knowing) cells. (So the poets were right, once again.) It is possible to learn to listen to your body's way of answering questions, which is really good to know at times when your brain is too overloaded to send you a clear signal.
The best way I know to demonstrate this is to go to a quiet room, get as comfortable as you can in a sitting position, close your eyes, just breathe for a few minutes and settle yourself. Now ask yourself two kinds of questions, one of which has a blatantly obvious (even repellant) NO for an answer, and the other of which has a resounding YES for an answer. You want to ask questions that *for you* are extremely NO and extremely YES.
For NO, I might ask myself something like, "Would I like for my car to be stolen from the grocery store parking lot?" or "Should I go cut down that majestic old oak tree at the park?" or "Would I enjoy being super angry with my children all day and have them all in tears by suppertime?" Then notice where in your body you feel that deep NO coming from. Most likely, it will be a consistent, specific location. Get familiar with what sensation signal your body sends to you when it needs to say NO NO NO.
Now craft a couple of questions to which the answer is a resounding YES. "Would I like to take a trip to (paradise of your choice) this spring?" or "Do I want to win the world's most comfortable tub that keeps the water at just the right temperature for hours and soak in it every night?" or "Do I want all the people I love to wake up today feeling contented and kind and joyful?" Notice where your body releases the YES to you.
Once you know this useful bit of deep body wisdom about yourself, you can pose all kinds of pesky, lingering questions to your body and just notice where you feel a response. "Do I want to go for the clinical trial?" and then "Do I want to try Afinitor + Fas for now?"
I'm just really curious what will happen if you try this.
(Who else is suddenly craving a bowl of granola right now? LOL)
But seriously. It's kind of amazing how well this works.
SPOILERS:
Best not to read this next bit till after you've tried it, because I'm going to tell you what happens when I do this myself, and it might influence your own authentic response if you read it before you try it.
la la la
fa la la
tra la la....
Okay,
all clear?
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For me, NO comes from the center of my lower gut. It is a fleeting clenched feeling, a faint tightening, a quick wave of ill-at-ease deep in my large intestines... or maybe like a quick shutting tight of the love-giving, life-giving center of the body. YES takes wing, lifting up and outward from my chest, around the breast bone, and it feels like it lightens my chest and my forehead ever-so-subtly, for just a moment. Sometimes I feel like my lungs take in a little expanse of happy air with it, whereas with NO I sometimes feel like I momentarily clamp down my breath center.
So... how about you?
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lulubee, I like your exercise. I think I do that sometimes without realizing it. Shetland, hope this helps you make an easier informed decision and I hope you will stick around on the Ibrance thread to let us know how you are doing and what decisions you have made. This is a great group and we all care for each other. I pray once you've decided you will feel much relief and at peace.
Hugs, Faith (in the future
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So saving A/A for later weighed against two important ifs -- IF the new drug is as or more effective, and IF I get put on it from the start. Maybe those ifs pose too high a risk for me. If I did not have access to any kind of mTOR inhibitor other than in a trial that would be one thing, but I do have afinitor available. Cure-ious gives me more credit than I deserve; I had not seen that study. It really served to remind me that with trials of new drugs, often the hoped-for or expected results are not seen. Maybe I do not need to do a Phase 2 trial at this point in my career. Also, it's not like they are testing this new drug against everolimus (Afinitor) because they think it might be better. The are testing to see if it improves the PFS time if given in addition to fulvestrant. And my Fas + Af option is similar to that without the rigamarole of a trial for me. Z kind of sums it up: "The trial has the potential to be a better drug with fewer side effects but it may not be. And you may not get it. And the stress involved in participating in the trial..." Another thought is that if I go with Fas + Af and I can't handle Fas, I can easily switch to Aromasin; and if I can't handle Afinitor, I can easily stay with just Faslodex.
Lulubee, I love your post. Of course I want to impersonate an enlightened hippie. I feel "No" in my stomach, like a falling sensation and an ominous stirring or vibration. And my hands tingle as if they are light-headed. I feel "Yes" in my chest, like a glow or a lightness with a little leap, and also a general calming in my whole body as if it is lowering slightly to a centered, connected-to-the-earth place. Crunchy enough for ya? The poets are always right.
I think that as my mind was working so hard on decision-making, my gut took it all into account and made the decision. No doubt they have been communicating. Even as I sent my doctor my final list of questions, I think I could feel that the decision had been made for me by some other part of me. At least I will live with this idea for a few days, and as long as nothing unexpected comes up to change it, I will proceed with Fas + Af next week at my current cancer center.
Faith, thank you for your kind words. I will definitely hang around. Just because I'm leaving Ibrance, I'm not leaving my friends here. Huge hugs to everyone and thanks for sticking with me and being part of the process. I don't think I would feel anywhere near as settled as I do had it not been for you guys.
P.S. Sorry, Z, the trial is "MLN0128 in Combination With Fulvestrant in Women With Advanced or Metastatic Breast Cancer After Aromatase Inhibitor Therapy" NCT 02756364 There are many trial locations across the USA.
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Lulubee - So glad you are moving forward. Glad to hear your update, and thanks for helping us all laugh!
Cure-ious - Such a great point about trials maybe being better, but not always than current standard of treatment.
Shetland - Glad to hear you are settling in on decision. It sounds like a good one. When my mets became active again, I was looking at possible trials.When I actually read the protocol for the trial I was considering, I realized how much anxiety I would be adding to my treatment. First was long distance travel, which was unrealistic. Second was many additional blood tests and I'm a hopelessly difficult stick. ( I actually was very kindly dropped mid-way through a clinical trial I once participated in studying stress hormone levels and bc because the trial team was unable to draw sufficient blood). Seriously! Talk about adding stress!
As I considered the new trial, it dawned on me that at least for this moment in time, normal standard of care was fine.
I'm so grateful that trials are available when they make sense for us to try. I'm grateful for the people who participate to test new treatments. And happy they either have decent veins or ports! At certain times, trials may be the best choice for any of us.
But
, whether it's Lulubee's crunchy decision-making model or something else, in the end once you've done all the research (which you clearly have and graciously shared with the rest of us)...after that, maybe it's kind of like Dorothy in "The Wizard of Oz" ...the answer was already there all the time. Well, maybe not, but it's one of my favorite movies and I thought this was getting a little philosophical!0 -
Saw my new oncologist this week and was nervous about having to get someone new. I actually like her better. Anyway, when I saw her this week my husband asked her to give me an x-Ray. Before Christmas, I had a bad bronchial infection and still have sniffles and a little congestion. But the Onc called me to let me know that the radiologist saw some shadow on my lung. I had my last Pet scan 3 months ago and am scheduled for one on the 28th. I am a wreck. The has bone mets but that is all so far and my tumor counts have been going down. My immune count was not good this week and so the Onc took me off Ibrance for another week. I am nervous. This is a roller coastal ride. Thanks for listening and sorry I don't know the shortcut terms.0
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Airlinegal -Glad you like your new onc. Scanxiety is the pits!. It's hard to push the question marks out of our heads sometimes, but the fact your markers are dropping is great, of course. With this questionable "thing," any chance they would move your scan up a little sooner so you don't have to wait until end of the month? I'm guessing that your onc must not be majorly concerned or would have pushed for an earlier scan herself. Many of us do have weird things that show up and disappear at various times on scans and x-rays. Could what they saw be related to your bronchitis? Hope you get a quick answer and find Ibrance is doing its job! Hope you are feeling better soon!
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Well, I was feeling so settled with my decision and sure that both drugs are the right ones to use, and now I have found out that we do not actually have the prior authorization yet. I had asked for things to be set in motion earlier this week, but all that happened was it was sent to the pharmacy. I thought that meant it was authorized, but no, I called the pharmacy and learned they are waiting for the doc to get the prior authorization. So today the nurse started that process after I contacted her. She says let's see what happens, we can always appeal. My onc seemed confident but I am worried because the second opinion onc thought Afinitor would not be approved with Faslodex. There goes my peace for the weekend. I really wanted to start this combo next week. It will probably be days for the first request, then more days for the appeal. And will I even get it?
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Sorry Shetland....this back and forth is unnerving. Hope all is resolved soon. Try to enjoy your weekend. Prayers to and for you.0
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Shetland - That Faslodex/Affinitor clinical trial that you referenced earlier makes it pretty much impossible for the drug company to deny your treatment plan. They can't argue that faslodex + affinitor is experimental or unproven. Keep that reference handy in case they "missed" the study.
I believe you are still on letrozol and I do think your cancer is "indolent". No harm if you lose a week or two. You'll just be stronger for the new treatment when it starts. I think this is all good. Please enjoy the weekend, do stuff you enjoy and tune this whole thing out. Your plan will proceed in due time. Now that you know what you are going to do, don't spend another minute thinking about it. Life is short, as they say.
Lulubee - For a given individual and a particular treatment decisions, I would put intuition ahead of statistics any day. I believe we become curious or interested in the treatments that will work for us. I think we feel comfortable or confident with the treatment option that is right for us. Like many on this thread (I believe) I love granola and research papers equally. I think we'll do well for this reason.
Thinking of you. Are you still in the hospital?
Airlinegal - I am sorry you are dealing with this. Hope the xray turns out to be a false alarm ... which it may be. However, make them move the PET scan up if you are concerned. Living in scanxiety until the 28th is unacceptable and if there is something there you need to get on with the business of figuring out what to do.
>Z<
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Z, I came home a week ago, after being in the hospital for five nights, six counting the day in ER. Still snorting oxygen, but at least I'm HOOOOOOME.
You're right on about the balance of brains & gut instinct... we gather all the facts, ruminate, pray, meditate, thinkthinkthink... and only then are we totally ready to ask our bodies for an answer. It takes all of it, these cancer conundrums.
Thanks for thinking of me. Hope everyone has a peaceful, restful, restorative weekend.
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Shetland - If necessary, you could start Faslodex shots first, which would be speedily approved, no doubt, and would get you started on new treatment quickly. And, if necessary, you could enlist help from Novartis for Affinitor. They want their drug out there being prescribed, and I'm sure would do anything possible to facilitate, if there's a question--particularly in light of the trial info.
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Lulubee - relieved to know you are home, snorting oxygen. makes all the difference. i wish you a restful, restorative weekend.
>Z<
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Airlinegal, I'm sorry for this lung worry. TMs going down is a good sign, right? I hope you can get the PET sooner so you don't have to worry for so long. Unless the doctor thinks the recent infection needs longer to clear up before the PET to get an accurate impression. When I had a head cold, the PET showed activity in my sinuses, lymph nodes, etc.
Moissy, that's a good idea to let Novartis help with the appeal if necessary. Zarovka, my onc said what you say, that they have to approve it in light of the recent trial results. I'm sure she will use that info if an appeal is necessary, which I think it will be. Yet it is not standard of care, so that worries me in terms of getting authorization. Actually, I decided to stay off my drugs because I was considering a trial that required a washout period, and I am still off now because I figure it might be good to give my body a break. But if there is going to be much delay, I will probably go back on until I run out of pills. Moissy, I don't think I will start Fas early for two reasons. If I don't get my combo I may reconsider the trial, and my second opinion onc was in favor of starting two therapies together rather than staggering them. I picture it as a surprise invasion on the cancer. We'll see. I'll talk to my onc. There is nothing more I can do over the weekend so I must think about other things if I can.
Lulubee, I figured you were out of the hospital from your posts elsewhere -- glad to have it confirmed. There's no place like home. (Winking in Moissy's direction.)
So you all may be interested to know that off Ibrance and letrozole I still have evening hot flashes and night sweats (my mom flashed for ten-plus years with no drugs), but less pain and stiffness when I first get up from bed or chair. Oh here is another tidbit. The second opinion onc said that this progression looked like the typical way it happens when Ibrance is starting to fail. I think she meant how it came on so slowly.
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can IBRANCE be given in combination with letrozole to someone who has failed letrozole (given letrozole alone )
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many - yes. however, if letrozol failed it may make more sense to combine ibrance with faslodex. it will depend on the details of the specific history which way one would go. faslodex is the second line hormonal after letrozol and it has been shown to work well with ibrance.
>Z<
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many: I'm taking IBrance with Arimidex and getting wonderful results. I have had Femara in the past and my side effects were rough. So far with Arimidex, only the usual fatigue.
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So this week I start a different treatment, after 22 1/2 Ibrance + letrozole cycles. I think that is pretty close to the average time in the trials. Though I complained about fatigue, I know I had it good for those almost two years. Thank you so much, everyone, for helping me through the process of choosing from the options the oncologists gave me, and then waiting for authorization. I am going with Faslodex + Afinitor. I'll work on updating my stats below, so Zarovka won't have to come after me. (With affection, Z.)
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Shetland - I'll always be after you for something, if only to keep fighting for the very best care. At this point, however, I am confident that Faslodex and Afinitor is going to be easy and work well for you. Keep us posted. It's a new option as far as standard of care goes and possibly a good next step for many of us.
>Z<
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Shetland, just wishing you good luck and a very long run on your new treatment. It must be a relief to have made a decision, gotten the approval and get on with treatment. I will pray that it works well and is also easy on you. Keep us posted.
Faith (in the future)
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Good luck, and keep us posted hereon the Ibrance thread.
Stefanie
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Shetland - I am rooting for you to respond to your new protocol! Congrats on the approval process, that is sometimes an uphill battle. Please check in with us and keep us posted. We care very much about you and want to know how this works out. Keep dancing!
Faith and Z - the rads seem to have killed the jaw met, so I start round #15 on Friday. Planning for a France cruise on the Seine in July. Weeeee~
(()) Claire
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Hi Claire - so glad the radiation worked but not surprised. Nice to have your jaw back in action for sure. Is it 100% fine already?
>Z<
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Hello all - I thought I'd share that I am no longer on the Gedatolisib trial. I had two Grade 3 reactions (after treatment 1 and 3) resulting in a terrible rash all over my body. I'll meet with my MO on Monday but I imagine she'll keep me on the ibrance + faslodex combo. Although, my neutrophils were .7 and my potassium continues to be low (ibrance dosage week 1 was 125 mg, off on week 2, week 3 was 100 mg, week 4 was off week). Any advice on how to prevent this? My bloodwork was always good. Also, does anyone have experience going back to a hormone therapy that they were already on? I so want to go back to anastrozole.
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Tears of gratitude for your friendship, Z, Faith, Stefanie, and Claire.
Claire, very good to hear the radiation killed the jaw met, and glad you have a trip to look forward to! Mostcapable, would you elaborate on why you want to go back to anastrozole?
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maybe I'm reeling from all the side effects that I am experiencing and remembering the ease of anaztrozole. I had 1.5 years on anastrozole. In May of 2016 I had the best scan I've ever had - everything had shrunk considerably. In August of 2016, my liver met grew ever so slightly, in October, another spot, showed up a bit more. We talked about changing then, I came off anastrozole for two weeks. My MO listened to my thoughts and agreed to let me stay on anastrozole. In December, my next scan showed the larger spot (confirmed cancer through biopsy previously done in 2014) shrunk and the other spot was slightly bigger. I was well within the RECIST criteria for staying on the current therapy. So, then the trial opens up and I have the PI3KCA mutation. So, because there wasn't a spot for me and then there was - plus, my MOs opinion that therapy was failing, I went for the trial. Scans to determine eligibility for trial showed stable disease after being off therapy for another two weeks. Now, I'm here and the trial has failed because I must be allergic to the Gedatolisib. I'm trying to determine where to go from here and kind of want to push the anastrozole as far as I can. Maybe that's silly.0
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Shetland,
So glad you have a treatment plan in place and it sounds like one that has been successful for others! I'm sure it feels good to have thing settled. We are here for you!!
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Mostcapable, I can understand the stress and questioning. It is so hard when so much is a judgement call. What about staying with Faslodex only right now? It still constitutes a change in treatment to satisfy your onc, and it has the fewest side effects (per my onc) to satisfy you.
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Thank you, Iwrite!
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Claire, that's wonderful news on the jaw met. Great way to celebrate with a cruise on the Seine in France. Praying that the Ibrance keeps all of us stable for a long time.
Hugs, Faith (in the future)
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Shetland, Good choice, its what I would have done as well- at least we know that Afinitor works, what the SEs are, and that there are now some work-arounds. But let us know how it goes! I asked my MO why not just add Faslodex to the Ibrance/Femara when I progress, since they are all FDA- approved, and she said because no insurance will pay for it (no trial has been done to see if that is effective)..
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