Ibrance (Palbociclib)
Comments
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Cure-ious,
I'm curious about your last comment -- MBC has many treatments, but some of these we really don't want to pass by. Are you referring to piqray with that comment -- I mean, is that one that you wouldn't pass by? Don't know if you read my saga earlier to which Pat just directed her last comment. I do have the mutation making me eligible for Piqray. But the other thing they are talking about is a tecentriq (immunotherapy) clinical trial. Right now I'm sticking with Ibrance until I've sorted this all out.
Thanks for any opinion you might have on any of this.
Bev
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BevJen- Ooh, options!! What is the immunotherapy trial you are considering- and is it because you positive PD1 expression? How do they rate that (high, low?) For that matter, how do they determine how pervasive the PI3K cells are in the cancer (meaning, do most of the cancer cells express active PI3K, or there are some detectable ones around who might be trying to grow up to become the majority of cells?)
I definitely don't want to bypass Piqray if I have PI3K active cancer, and I would add in Celebrex because those cells depend on COX-2. Anything to stay away from chemo, its less clear about AA except for those with FGFR amplification do get a really good response. I see there are some trials where they are combining stuff with Halaven, which seems a good idea- Xeloda too- since those drugs works well, why aren't they adding stuff to make it a lot stronger and last longer?
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Cure-ious, I asked for and got the PD 1 test last year. I was told I was negative but then word came out that the test had been improved and was now more sensitive so I'd need to be retested in the future.
I also requested Foundation One testing from my onc via email this week. My confidence in Lynparza remains high but I like having alternatives popping out of my pockets, as does my onc.
My doctor likes Halaven....don't know what he would combine it with.
He has me staying on Arimidex with Lynparza unless he changes his mind.
One of the women in our support group had crumbling vertebrae and is slamming those mets with Xeloda. She's so much improved. I've seen so many women do well on it since it came out forever ago, especially since they stopped giving such high doses.
My best to you as you decide what to do. Just pray and jump in! I think we're going to see many quick changes in the next couple of years.
Love from PatGMc
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Hi everyone,
I just wanted to pop in and tell you that I am still alive and kicking ... meaning that I am still in remission wrt my primary tumour and the nodal mets. My spine mets are stable and to some degree sclerotic.
My oncs are completely amazed that my primary tumour completely disappeared merely on I/L (plus Zometa and Leuprorelin), I am the only one at my hospital with such a great response. They even offered my to go to bi-yearly staging instead of quarterly, which I refused as I have not reached the median for bone-only mbc and do not want to miss the correct point as to when I need to switch treatment (which I hope will not come too soon).
I am currently about to start cycle 28 (at 125 mg for the whole time), I am just waiting to recover from another viral infection. I tend to get these when I overdo (which is likely to happen with my nerve-wracking part-time job, 2 kids at 7 and almost 9, and everything else to take care of), and they will last much longer than before dx.
Sorry for not being able to keep up with the Ibrance thread ... and hi to everyone new (although I wish you would not need to be here). And as always: please foregive my poor English ... I promise my German is better ;-) .
Best regards, NettaGER
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NettaGer, your English is great and your story is even better! Thanks for checking in and congratulations on your successful Ibrance Dance! Keep on keeping on!
Love from PatGMc
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Cure-ious,
Thanks for your response to my request for an opinion between Piqray and a trial, my current options. I will be meeting with my oncologist next Tuesday to discuss in more detail.
These options were provided to me on the basis of my F1 results from this past May/June.
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Cure-ious,
I had a similar conversation with my cancer team last week. I had my 3 month check-up, still stable but they said they were going to send a biopsy of spinal mets taken two years ago to be tested for the PK-13 mutation in case I have progression on Ibrance. I asked if it wouldn't make more sense to do the biopsy after I have progression-they said no. I'm wondering if the drug company for Piqray is doing some sort of push for oncologists on this issue. My spinal biopsy sample was so small (it was to verify that my spinal mets were breast cancer), I don't think they are going to get much out of it. They said if the sample wasn't usable they would then do a Guardian 1 blood test. But then added if I am stable there might not be cancer cells floating around in my blood. Who knows?
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Oh, wow -- that is REALLY interesting. What I didn't describe on this thread was the manner in which Piqray was pushed upon me. First, the pharmacist, prior to my meeting the other day, had actually called my prescription drug plan to get approval for the Piqray without even checking with me first. I mean, she even had the copay that I'd have to pay each month on my Medicare Part D program. Then, they had printed out the Piqray info for me and handed it to me. When I asked if that was the "diarrhea" drug, both the pharmacist and the NP said -- well, maybe, but we haven't had too much trouble with that with patients. The other thing they had offered to me was this tecentriq trial that's taking place at the same institution. Oddly, they had not printed out ANYTHING for me about the trial until I said -- I want to see that.
Also the whole meeting was bizarre. It was as if they were waiting for me to say yes to Piqray -- I mean they kept looking at me for an instant answer -- so I failed that test.
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Bev, I just did a search on "do doctors make a profit from chemo drugs." Eye-opening. Oncology practices buy chemo drugs wholesale and mark up as needed (to maximize profit). The rules have changed over the years but it still works like this. And don't get crazy over it. This has to be the best way for us because you really don't want to pay for in office chemo out of your drug insurance. Oncologists have to make money somehow, right? They don't do "procedures" much which is where other doctors make the most money. Maybe Piqray is a better money-maker, certainly better than a clinical trial. I would ask MO, "what's your profit margin on Piqray?" That ought to make you her favorite patient.
Aren't you glad I dropped in? Obviously, all my efforts at attitude adjustment have failed.
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hi all!
Just reporting back from post-dental appointment that everything looks fine. I think a piece of food was stuck inbetween my molars and that’s what caused the pressure and bleeding. Whew!
The dentist wasn’t holding back though and let me know I have 70 year teeth (in the body of a 42 yr old) 😭!!!
My friend is the hygienist and she said he was exaggerating quite a bit. But they think I need a night guard. Which I can understand. I’ve definitely cracked a molar before and then needed a very expensive crown!
nettager - your English is perfect!! And your story is wonderful! Thank you for sharing the great news! I think I’m in the same boat as you with regards to response to treatments. My primary tumor, which was huge!, is gone!!! Incredible!!Here’s to all our treatments working, continuing to work, or finding the right treatments that work best for our bodies
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Jaycee,
Thanks for popping in! Good to hear from you!
Piqray is not a chemo drug, though, and so it will be charged against my prescription drug Part D -- and guess what? You will recall my comments several months ago about how much Ibrance cost me -- Piqray would cost me more.
With respect to the faslodex shots, though, that is charged against Medicare Part B (thankfully) because it's an injection and administered in the hospital. So that's good. If I were to go on piqray, I'd still be on faslodex as the anti-estrogen.But they are recommending that I purchase the drug from the Hopkins pharmacy. So maybe there's something to that mark up question.
Bev
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Hi all !
Hi NettaGer ! I am busy too and don’t post very often, but I read more often. So happy for you, doing great on Ibrance!
I like to wish everyone here a long time on Ibrance and outstanding results!0 -
Hi all.
Question for you all about the mutation testing---- Will insurance pay for PI3K testing more than once????? I mean if they test now, before progression, and then when progression occurs, will insurance say you had the test once and will only pay for 1 test. I mean, I was denied a PET 1 year after the initial one and told only do when progression. They did agree to a PET now, after slight progression of liver met on CT. By the way, having that PET scan this Saturday.
I did ask my MO about Piqray IF this slight progression is really progression, and she said she wants to try a PARP first since my F1 studies done 2017 shows PARP's may work for me. She did not say anything about testing for PI3K. Or repeating the F1 studies. So she was definitely not pushing Piqray on me.
Just wondering if insurance would cover all these tests and doing them more than once. I am sure they are not cheap. So maybe wait until a treatment change is needed.
Nettager- Good to hear from you !!!!
Philly- Glad the tooth issue was easy to fix.
Edited to say---- Jaycee-- Good to hear from you too.
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Philly - Im a night clencher and want to get a guard in the next few months so that I don't risk cracking something. I guess my days of high popcorn consumption are about to come to an end too
Glad everything was A-OK!0 -
Philly,
I have broken two teeth now with mouth clenching. My dentist doesn't believe me when I tell him that I do that, and that sometimes I wake up in the morning with a sore jaw. Not sure why he doesn't believe me -- I've had two dental implants done because of the broken teeth.
Anyway, not sure if you know this -- but I have seem mouth guards in various drugstores/stores (and probably online). They work better if they are fitted, but some of the ones I've seen you can actually boil them and then when they cool a bit you can put them in your mouth so that they fit and adjust to your bite. You might want to try that first because it will be cheaper than a dentist-constructed guard.
Good luck!
Bev
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Bev...I wouldn't even want a PET for the bones..personally I would want a MRI...the CT Bone scan with and without contrast NEVER saw my hip met...and neither did the PET but the MRI...it did every time.
Cure-ious...I was talking to someone yesterday that was saying Piqray is brutal....have you read up on it? I know my doc is gonna also see if F1 will re-test my new tumor and she is checking specifically for P13K and ESR1
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FWIW for those considering a mouthguard -- I bought one at the drug store. I boiled it and fitted it to my mouth. I then had my dentist review my work. She was shocked at what a good fit it was. I bought a Dentek Professional-Fit Maximum Protection Dental Guard | Night Guard for Teeth Grinding. It was about $15 to $18. (I have no affiliation with Dentek). Good luck.
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It turns out I do not have the P13K mutation. I asked about whether testing a two year old biopsy would be relevant if I have progression in the future. Here is the response I received:
"We have been testing tissue from metastatic tumors, not the initial breast tumor. From what we have seen, the PIK3CA mutation does not change over time. That being said, there is a test called Guardant that looks at the blood. If there is circulating tumor DNA in the blood it can be tested for a PIK3CA mutation. We can order that lab to drawn when you come in for your next appointment if you are interested. That would provide current tumor DNA information if it is present in the blood."
Nicole-glad to see you have a new treatment plan in place. Hope that Xeloda is very effective for you.
Philly-Glad to see your dental issue was not as awful as it could have been.
Pat McG-Maybe you can start a Lynparza thread when you have time-I think a lot of us would like to know more about this treatment and your experience with it, since we may join you on that at some point.
Best wishes to everyone as we puzzle through all these possibilities.
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Hi All,
It's been awhile since I've posted. I love reading that people are doing well. I'm on Ibrance with Exemestane. All was going well until my TMs went from normal range to 50. Scans showed bone met progression in several locations but nothing in my lung, liver or brain. My MO suggested radiation for the bones (causing me discomfort) and a different AI. Separately, my biopsy from my spine is being sent out for testing. As I recall her saying it was to see if there was a better drug for bone mets with Ibrance. Is anyone familiar with this scenario?
Wishing all of you well.
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Hi NettaGER, So great to hear from you, and that you are doing so well!!!
Chicago- That is exactly what it felt like, the doc comes in with two people in tow, who she only introduces as being part of the Piqray group and that they will be testing my blood. She said the bone biopsy would be unlikely to be useful, and they would be trying the blood test. I figured it was a push by Piqray to drum up some more clients...
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Hi All, been away for a while ( Madeira in the sunshine). This is such a busy thread!
Bev, good for you in questioning and also that you have the energy to be angry about the ‘attitude’. You won’t be bullied!
PatMcg delighted you’re popping in and new treatment doable for you.
For the newbies, you’ll note there are common themes and a skim through the thread will help you as they have me, especially in dealing with side effects. Just that ‘it’s not just me’ is a big help
Re sleep... I’ve taught myself to relax, meditate and be mindful. I’ll use the Calm App or talk radio if it is soporific, calm voices ( we have a station called radio 4 in the UK....sends me to sleep in no time!)
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3 days until I get my week off Ibrance. I finally have some symptoms to report! First one, GAS, I'm talking firework extravaganza finale on the 4th of July type sounds coming from my body. Almost feel like I need to strap on one of those giant gator swamplands navigating fans to my back to keep air circulating around me so i don't cause someone to pass out or something, definitely not Chanel #5 coming from my behind I'll tell you that much. I feel the cheeks on my face balloon up everytime a blast hits me- I'm making myself gag. My poor husband, my poor cats, I swear I scared one of my cats the other day. "What the heck is that noise Mother?!" Second one is teeny little sores on the tip of my tongue. Not bad, but there and alittle sore and annoying, I'm trying the yogurt trick to see if that helps, I take my Ibrance and Aromasin with lunch and am chasing it down with some yogurt, see if that helps with the sores and of course I'm trying to keep my mouth clean like I did with AC chemo.
Curious to see what the week off is like, think it will give me a clearer picture of what a cycle is like
Take care ladies! 0 -
Radagast,
I, too, suffer from those teeny sores on my tongue. They are not mouth sores as some have described but they are pretty painful, especially depending upon what you are trying to eat. For me, they tend to develop at the end of my second week and then run into my third and even into my week off. Then they go away.
I've been swishing with various things I've found at the pharmacy, and it seems to help a bit. Also, I do the yogurt thing as well.
Good luck!
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Bev, right, its not like others have described with the mouth sores, its different so i wondered about it, and YES to how they feel being related to what I'm eating, so definitely will have to keep that in mind on days when I feel them. Cycling on!
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thanks BLMike for the night guard recommendation!
My dad was a dentist so I spoke with him about it. He’s not as excited about the mouth guard for me. I trust his opinion ❤️ going to hold off for now...
Happy Friday everyone! I’m slowly getting out of bed on a chilly morning here
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Hi all,
For those of you who are on an altered ibrance schedule - either a reduced dose or different timing (e.g., 2 weeks off instead of one) - how many cycles of the standard regimen did you go through before deciding to reduce/alter? I'm on my 5th or 6th cycle and have had very low counts every time. Because of other concerns, I've had a zarxio shot with every cycle to boost my neutrophils. Those are finally resolved so this cycle we're just going to wait and see what my body does without help, but my oncologist is already talking about reducing. I know that many people are successful on something less than the max recommendation, but I'll admit it still makes me nervous. When something seems to be working, it's really hard to consider changing!
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mshar..I reduced from 125mg to 100mg at cycle 4 due to low ANC and platelets
I am starting cycle 38 now.
I was dx with liver mets and was on AC for 3 months then switched to Letrozole-Ibrance.
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mshar, My oncologist and I decided after the first month to drop the dosage from 125 to 100, after a 2 weeks break, due to low ANC and platelets and poor quality of life due to side effects. Second month dropped from 100 to 75 for the same reasons. 18 months later the side effects are liveable and predictable [if not consistent] and my latest scan showed no progression.
I wonder if there is progression in the future I could up the dose ???
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BevJen-
I am in intermittent contact with a well-respected European ILC researcher that has a small, unpublished pre-clinical study of ILC cell lines (admittedly, far removed from humans) that found PDL-1 positive (1% or >) ILC mice (n=5) had a very good response from Atezo (100% had tumor regression or disappearance) at the 6 month mark. Only one of the non-PDL-1 positive mice (n=6) had any durable response.
There are many reports in human results (in mostly other cancer types, notably melanoma and lung) that correlate better response from IO in earlier lines of treatment. Personally, I would lean towards the immunotherapy trial and keep Piqray in reserve for later.
It's unsettling to have to make new treatment decisions, but it seems that you have 2 good options. Keep us updated.
Elizabeth
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Elizabeth,
Thanks for this information. I've spoken to the research coordinator and at this point, I am definitely leaning towards the atezo trial. The benefit for me is that it's still at Hopkins, so I know some of the players. I will meet with my oncologist on Tuesday to talk about exactly what she thinks of any progression, and how to move forward. There's a 30 washout period and I just had a faslodex shot, but I am on my off week for Ibrance, so depending upon how quickly this moves, I may do one more month of Ibrance and then start the washout with hopefully a start with immunotherapy after the first of the year. We shall see.
Bev
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