Ibrance (Palbociclib)
Comments
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Can proton therapy treated a large number of very small mets to the lungs everywhere? Or is it only for a few larger ones?
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Nicci Agh I feel so sorry you have to go through this changes now. Hope our doc comes up with a great idea. Feel good soon. Dani shall be having scans also, we are waiting for the schedule for this week or next, so it's definitely nerve wrecking if Ibr/Letr has worked at all, it will be the first scan on this mixture.
Babs you are always welcome, we would miss you if you would not bump in. Please do.
Rpoole wow I read your response to the proton therapy, definitely a good thing to know. Thanks.
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That's really amazing rpoole, I can't believe he will treat for free! Thank you! I may be back for questions. Crap, maybe I'll come back to Knox and see your guy! Ha! My mom and I do have to go up this summer and pick up some things she left at a friends house when she moved down here in Aug. Plus, I need to visit my best friend who lives in Andersonville. Seriously though, I really appreciate all the info and I will definitely keep you in mind for questions.
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Momall...most everyone has had great results so no reason Dani should not. Like I said, I really hated to even say anything. I almost didn't, but then I didn't feel right about that either! Fingers crossed and good, positive thoughts!
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Goodbyegirl, they can only ptoton the bigger nodules. There def needs to be a alternative treatment for scattered mets.
Nicci, you can ask me anything at anytime. I would be happy to help. And when you are back in Knoxville, stop by the proton center. Everyone that works there are very welcoming. My drs name there is Dr. Meek!!! He is one of thebig wigs there. He specializes in breast cancer. He has over 30 years as a radiologist. Wonderful amazing man!
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Yes, I should do that! I am writing his name down to keep in my wallet just in case. And you know, maybe that is why my doc didn't mention it to me....my lung and chest nodes are small and scattered. Little bigger now, thanks to Ibrance not working, but not big enough apparently. Still gonna ask of course.
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Niccij the problem is that Dani is Her2+ and it's not specifically recommended for those ppl with this type, but documented for Her2- only so far. So doc is doing a shot in the dark, and trying to adapt it to Dani.
Btw, could I ask everyone, in order to get the Ibrance for the next cycle, you guys have to ask doc to order, or the pharmacy sends it automatically or... Because now we gonna be ordering for the fourth time, but every time I had to call the person in the Onco office that orders the drugs from the pharmacy to place the order. TIA.
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I call Walgreens each month. Before they will send they call you back. Same thing every month.
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Re: ordering of Ibrance:
I use a specialty pharmacy (Accredo) and they call me during week three to schedule the delivery which I make sure to sign for. Wouldn't want that delivery to be lost...
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Mom -Doc did a six-month refill script, and the specialty pharmacy calls me each month to confirm when I want it to be shipped.
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Momall - the Ibrance ordering dependw on your insurance, I have UHC, so their network specialty pharmacy (Optumrx) got a 12 month order from my onc- and refills it every month - they call my home to remind me. Then order is shipped w/o signature required. Sounds like Animalcrackers and I have similar experience. Rpoole - I read your proton story - very moving. My lung/pleura met is a micronodule, but if it gets larger I would consider proton therapy for sure. Did you have lung drains prior to proton therapy? I have to get my left lung drained every 4 weeks or so. Not fun.
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Momatt, it doesn't seem like you should have to remind the onc's office to reorder. Many insurance companies use their own specialty pharmacies for this drug, so I think the majority of us here get it from one of those, with either the pharmacy or us initiating the follow up call/re-order. It sounds like Dani's onc is so hands-on with her care, as well as being quickly ready to make a switch in meds or dose, if needed, that he might be the reason it's not a standing order. Perhaps after her upcoming scans, you can ask him to set it up for automatic reorder for at least the next 3 or 4 mos.
rpoole, thank you for the info' about proton therapy. I'm not a candidate w/diffuse bone mets, but it's good to know about, and I'm so glad to know it worked for you, and happy to hear about them treating you when it wasn't even covered by your insurance! That's quite incredible in this day and age! And you are so right about the need to be our own advocates!
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I also have Acreedo as my specialty pharmacy and they call me to set up shipment. My insurance allows them to ship me 3 months supply at once
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Thanks so much for the input of how to go about it. At least now I know, I get the picture. And yes, Deanna, I will ask tom after the scans, I am sure he will concur.
I have to imbue good vibes now. GN
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Regarding a different hormonal therapy vs. chemotherapy as a next treatment: NicciJ it sounds like in your onc's view the failure of tamoxifen and then letrozole means you should use chemo (xeloda) next. Kaption's onc seems to have a different approach, saying that after arimidex, letrozole, and tamoxifen, the next one for her would be the hormonal therapy faslodex. If what I am feeling is progression then my history will be recurred on tamoxifen (stage 1 to stage iv), NEAD after taxol, then progression after only a year on letrozole + Ibrance. It makes me think my next treatment should be some kind of chemo, but my onc says faslodex. I plan on asking her to say a lot more about what goes into this decision, and convince me that faslodex is the best next one for me. I suppose they consider mets location, speed of progression, tumor biology, quality of life, etc.
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I would kinda think like you on this, Shetland. Not sure what all goes in the decision but my onc's tone was basically like, to me anyway, ok 2 hormonals 2 progressions, no more. His basic concern was we cannot let this progress anymore at all. Maybe faslodex later, but for now we gotta get this under control. That was my overall feeling about it. Which was great with me. I really like him and trust him. Now, your situation could be totally different than mine. Mine has been extremely aggressive from day 1 and that could be why he is hell bent on the chemo right now.
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I want to throw out a new question about a droopy eyelid. This was just this week brought up in the Ibrance FB group, and now, coincidentally, someone posted something about it here on BCO. Rather than repeat the question and my own concerned response, I'll give you a link here. Is anyone else experiencing anything similar? https://community.breastcancer.org/forum/8/topics/...
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Good question, Shetland pony. I'll be interested to hear what you learn and the reasoning. I will also ask for clarification when the time comes to change.
Deanna, I have not experienced that at all. I've had some vision issues we discussed before. But, after allergy season (after our lovely trees stop blooming) I'm going to have an eye check.
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So after a real crazy and anxious day at 11pm last night I got the Pet/Ct report, haven't gotten the MRI of the brain yet.
I had a quick talk at that hour with Onco, and we will continue this morning. So would be great if I could get your input before I speak to him, really appreciate what you think.
First yes, there is stability, but there is progression. The Medical Director the way he wrote the report in my eyes, it looks like I should be on also on whatever he is on. (joke). Well right off the bat, first he writes there is evidence of widespread multifocal mets skeletal disease. Then he writes there is stability… Then… the extent of disease throughout the axial skeleton is without significant change although there is suggestive increased activitiy in the spinous processes in the cervical and thoracic region.Stuff in the skull is "reidentified" (did not give me sizes with I hate) the pelvis are "relatively"stable, and sternum is increased.
I kid you not!What say you???
So sorry for the long story above, BUT really?? Doc told me well…its stable with some progession, can you faint?? In the Impressions: again overall stability, and then.. Multifocal hypermetabolic mets skeletal disease with evidence of progressive changes in the right and left ribs(more than before), and the thoracic and parietal bones..agh
So we started talking about changing something in the combo – Ibr/Letr, he started saying something about Xtandi – did anyone hear about it, it's primarily for prostate cancer mets. He is thinking in doing something with Ibrance...I don't know yet. I would appreciate all and any input.I'll post on the bones met also and see what they say.
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Mom, I've had similar results. (All bone mets here). Some spots showed small reduction, some small progression. Overall SUV-a tiny reduction. So, consideredstable. Those crazy mets don't all act alike. Talk more with the onc today- but, in my experience, it's always mixed results.
As an added "giggle" one report I had used the term "grossly unremarkable." What the heck does that mean??
Best wishes today that you get the reassurance you both seek.
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Kaption thx so much for the quick response, I kinda get it, but I got the MRI of the brain results now, and it's the same amount of lesions like 20 and the range size went up significantly. So certainly not happy about that. And the C2/3/4/ all are noted, and the word large met lesion. Nonono, waiting for Doc still
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MomATT ~ Quickly b'cuz I'm headed out the door to meet w/our CPA... I had similar scan results... overall improvement, especially on bone scan update, but a few worsening areas (even on bone scan) and much concern about a couple of vertebrae. So I don't think that's at all unusual, and my UCLA onc did not change my regimen. Her general comments earlier on mixed results had been, if an area truly worsens while everything else improves, a biopsy might be in order to see what's going on in that troublesome area (such as change in status). But so far in my case, she hasn't recommended that. That is troubling about the brain MRI results, but let's see what Dani's onc has to say about it. My other thought would be to review that fabulous compendium that Bestbird has put together for tx options.
As far as the Xandi, I would seriously get ahold of Hope (Romansma). Check out the thread Androgen Receptor Testing. She was on Xandi for awhile, so can best give you a firsthand report. Others on that thread may have been too. No sure, and sorry don't have time to read it now for you, but here's a link, and I'll see if I can help you more later: https://community.breastcancer.org/forum/8/topics/...
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Shetland and NicciJ, Regarding the next tx after AI failures. Just wanted to add that Faslodex is different from the AI drugs. Instead of reducing/eliminating the hormones themselves, it shuts down the hormone receptors. It has worked great for me after my 1st line AI tx failed.
Kaption, love the "grossly unremarkable" comment. We should start a thread for funny radiologist report language. I sure would like to meet one of these docs, they must be a different breed.
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Mom - Just sent you a private message RE: Xtandi and somrone else who was on it.
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Hello all,
MomATT - thinking of you with all the test results coming back on Dani.
Nicci - hope you can get that 2nd opinion and it helps!
CVS specialty pharmacy calls me to set up delivery each month.
Six months on Ibrance and Femara and scans this week showed no metastatic activity in the bones at this time...just lots of sclerotic lesions which my onc believes is healed mets. So grateful for a few more months with reduced worry. I wish it could work like that for everyone on this board!
I've noticed my vision is getting worse and finally went in to get it checked...30% worse since last September prior to dx. Also found that VSP won't cover a medically induced prescription change outside the regular time frame, so it's out of pocket expense to change lenses. My doctor said others on this protocol have had their vision get worse. I would do a happy dance regarding the scan results, however the aches continue and my counts are so low that I'm waiting an extra week to start Ibrance. Perhaps a nap would be a good way to celebrate.
Hoping for a pain free weekend for the group.
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I write- doing the big happy dance with you!! Then I will lay down and take a nap!! Great wonderful news, congrats!! Did they lower the Ibrance at all? I went to 100 mg after the 5th cycle - I noticed my vision too and go next week as well for new glasses. Today is day 14 on 100mg and fatigue has arrived. No complaints- but I ache too. 63 years old and osteopenia don't help. Hugs Carol0
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Kathryn -Great news on your scans. So happy to hear you had good results!
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Kathryn, Doing a happy dance for you, albeit a bit slow and short! Were the sclerotic/healing mets seen on CT?
I wish this tx could work that well for everyone else too.
Enjoy your naps my friends, one of our little pleasures!
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Yes... just said it elsewhere, but GREAT news on your scans, Kathryn! So happy for you!!!!!!
And ShetlandPony and NicciJ, I echo what jobur just said about Faslodex working quite differently than an A/I. Of course, your onc knows you best, but when Anastrazole failed me miserably, Faslodex was my onc's next choice, specifically because it works by an entirely different mechanism than the A/I's do. But I'm sure how much tumor burden you have, how bad the worst places are, and your overall health need to get figured into your onc's decision about your situation. Just one more reason -- as much as we learn here from each other -- we really need to be able to put our trust in our onc's experience and judgment.
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Wonderful news Kathryn
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