Ibrance (Palbociclib)
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Jaycee- I truly love ya. I laughed and laughed at your post about me (miss walk on egg shells). HAHAHAHAHAHAHA. So true. I can talk big on here. But I hate confrontation in person. And I fear upsetting my MO--- she has my life in her hands. And, in my area, I don't have choices to go elsewhere. If I piss off my local MO, I will have to travel 2 hours one way to go to the next MO.
But glad Rabbit did call. Not a good way to find out about progression---if that is the case--- and MO needs to know of her stress. Not wait for July appt.
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Well, I kept looking. Optumrx is insurance and a pharmacy. You get denied by insurance not a pharmacy. But it is still a concern that Rabbit got that letter about progression. Someone needs to explain. And if it is a money issue, someone should have explained first before she got that letter. They don't consider the trauma we go through when these bumps in the road occur.
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My MOs practice has its own pharmacy. I can’t get my ibrance at a “normal “ pharmacy. They apparently handle all paperwork, I have $0.00 copay for ibrance. Letrozole is $3.60.
I also have Humana Advantage plan. Earlier this year, got a letter from Humana said I couldn’t use MO pharmacy any more, must use:, and they sent a list So after I got over the panic, I stopped in one. Nope, can’t get that. Didn’t bother checking the rest of list, called MO.
Get another letter from Humana. Oh so sorry, all a mistake haha, you can continue as you were.
They just didn’t like loosing that little bit of control they had. Nothing was mentioned about progression.
DH is also stage 4, sees another dr in same practice. He’s on expensive meds too, same insurance as me He doesn’t have copays for the expensive med either.
Glad you called MO.
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RRabbit - let us know what your MO has to say - it is infuriating that a pharmacy would have any control over what meds our doctors prescribe!!!!!!
RE Scans: I have had 2 petscans (3.5 months apart). M.O. told me she would do scans quarterly. I have my next scans on June 29th.
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Verzenio announced success today in a trial in the the early stage setting to delay mets; Ibrance failed at the comparable test. Not surprising as V is 14x stronger than Ibrance. The new Pfizer CDK2-4-6 pill is way stronger still at inhibiting each kinase, so hoping that is still progressing thru trials
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Cure-ious thank you as always for keeping us up to date with the latest findings. Do you think that we should all change to V now or wait for progression. For example I have a mri scan next Monday if stable🤞should I start cycle 48 of I/L or request a change however if I have progression☹️is V the best next med? I know these are questions for my Onc but I value your opinion and indeed that of anybody else on this thread.
Bevjen I totally agree with your theory about stress “kicking off" the cancer. I know we all have stresses throughout our lives and I am usually pretty good under pressure. However, both before my BC Dx and then 12 years later my MBC Dx I was under unusual stress. I have a couple of MBC friends who concur with this.
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aprilgirl1, just a clarification - it isn't the pharmacy making the decisions, it's the insurance companies (who may or may not own the pharmacies). The pharmacy is just a supplier.
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Ciaci - yes, I should have clarified insurance companies not pharmacies. However, if a Doctor prescribes a medication, we should not have to worry about an insurance company blocking it which can take precious time and delay in our taking the medication which is really important to keep us alive or minimize progression of disease.
It is really hard not to feel like a "sitting duck" for lack of better words! Vulnerable, and at the "whim" of an unknown person or worse yet, a computer program who is rejecting the Doctor's request. I have not had an issue with my insurance coverage (yet, but I am fairly new to stage IV and ibrance/fulvestrant). My insurance makes me use a specialty pharmacy, Accredo which has been pretty good to work with once it is all set up. I am sure I could run into this same issue if the Doctor's rx didn't match up with the paperwork.
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After a bout of new, severe back pain my original oncologist referred me to a new breast cancer specialist, for a second opinion. I have just returned from a ct scan followed by an MRI at his request. I have developed a strange rash which appeared once before when letrazole stopped working for me and I moved on to faslodex. I have been 'stable' taking Ibrance for 27 months,. It has been 6 years since mets were found but this maybe the time for a change of medications. The 'what if' scanxiety is getting to me already, I will get the results Monday.
Hopefully I will get the treatment I need, as I read the various options on these pages, but I am in the UK and it has to be approved by national institute for health and care excellence. I do try and enjoy living every day, but feel like curling up somewhere quiet at the moment. It is going to be a long weekend.
Thanks to everyone who posts; good or bad news. I have found a great deal of support here.
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Cure-ious I'm in the same boat as our friend BevJen — rising markers and the suggestion that I am approaching the end of my ride on I/L.
I did start taking the I3C last week.
What other “little something" could my MO add (if she were willing) to stave off progression?
Penny
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Aw Denny the waiting is the worst!
Six years tells me you are very responsive to treatment!
That’s a really good place to start from. Where are your mets?
Hugs, Penny
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Hi Penny we have been on Ibrance about the same amount of time and I am also hoping for some what’s next advice. As I posted above I scan on Monday.
Denny good luck with your results. I too am in the UK so will be interested in anything you find out. Most things do seem to be available to us but we need to keep our Oncs on their toes not make sure that they don’t just follow the standardplaylist.
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FYI: My oncologist's clinic is located in the hospital. They have removed the check in desk where they check your temperature, etc. Visitors are now allowed into the hospital but everyone is still required to wear a mask. Here in Montana, we have had very few deaths and/or hospitalizations. Only a million people live in the state so it's pretty easy to stay isolated. That's the good news and the bad news. Nearest neighbor is about 1/4 mile away.
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Hey Penny,
I am taking Celebrex (200 mg) and Luce is taking daily baby aspirin ( both of these are NSAIDs) with the hope that they will help keep the tumor microenvironment in a reduced (non-inflammatory) state, which we think could be helpful for an Ibrance response, based on that paper from Richard Finn at UCLA that said the trials showed that those who respond strongest have low/no PD1 expression and high FGFR2 and/or HER3 expression, all of which Murfy says contributes to a reduced tumor environment. So that is very indirect and mushy, with no data saying is it safe or not to even take aspirin while on Ibrance, let alone possibly helpful, but there we are, no data to go on, all of us just trying to hang in there...
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Chico, Is it already time to scan again?! These three month intervals just whiz by. Good luck on Monday, we will be rooting for you!! Hopefully if you feel well, you ARE well...
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Hi penny, mets. in right lung and 2 lymph nodes on last MRI. I have had a relatively easy time up until now, but as it is for all of us the future is scary. I am not going out much, apart from an occasional walk, as our government advice is to stay home if you are immune suppressed ,so I am struggling to distract myself after 12 weeks, which does not help.
chico, I will give you any information I can glean from this new oncologist. Good luck with your scan on Monday.
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Circling back to the discussion Elenas started, talking about the SFX-01 drug which was tested in the UK and other sites in europe and had success combatting resistance to endocrine therapy. The drug is a stabilized version of sulferaphone, derived from broccoli extracts- apparently the natural compound is quickly metabolized, so it was altered so that it would persist.
First, that trial is now closed. Second, it sounds like the company now intends to try to test it for early stage cancer patients where it could prevent mets from forming. It was not tested with Ibrance, so no idea if they will find that it can add on to the effectiveness of I/F.
So far as I can tell, that leaves us with no trials in this area at the moment. The SFX-01 drug supposedly works by blocking Stat3 signaling in cancer stem cells. Similarly, the broccoli supplement i3C selectively turns on PTEN, which is a tumor suppressor that inhibits the Stat3 pathway. So more drug developers will hopefully move into this space.
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aprilgirl1, sorry, I should have clarified, myself - forgot you were relatively new here, LOL. My husband and I owned a pharmacy for 30 years - my job was to argue with the insurance companies to get prescriptions paid! I can't tell you how many times I had to call an insurance company, then call the doctor to tell him what the insurance company required, call the insurance company back, call the doctor back, etc, etc, etc. But we were famous for getting the authorizations needed! It got to the point that I would fill in all the forms, and just fax them to the doctor for signature - sometimes that took DAYS! So frustrating.
But I agree 100% - insurance companies should NOT be allowed to decide your medications based on their profit margins. Disgusting.
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Rabbit- I hope you are able to get things worked out with MO, pharmacy, and insurance. It seems like it is usually insurance rather than the pharmacy, but it is always frustrating and time consuming - one more thing you just don't need at this time. Very sorry to hear about this. More than once my MO has indicated what she thinks a patient needs is over rules /denied payment by insurance. Usually you post funny fart stories. Speaking of which. Did they get worse with each cycle?. Initially not a problem. Just started cycle 10. I have noticed an increase since maybe cycle 6 or so. Just started Adding kimchi and sourkraut to the diet hoping fermented foods will help the gut. Don't really like either one, but can tolerate a few tablespoons.
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Ciaci - I love my small, community pharmacy and the pharmacist and their employees, I bet you were a fantastic advocate for your customers! I am forced to use Accredo but I do use our local pharmacy and they are so knowledgeable and helpful.
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aprilgirl, I also use Accredo (we sold our store to colleagues, and they're not allowed to get it for me!), and that reminds me that I've wanted to ask, does anyone else have an issue with their specialty pharmacy wanting to refill too soon? I swear, Accredo calls or texts me every three weeks. Then I call back and say, it hasn't been 28 days. They tell me they just go by what's in the computer - 21 caps for a 28-day supply - and it's time to refill. This has happened for the last year or so. At first I would wait and order every four weeks (never had a problem with it arriving on time, because I was already ahead a month by then), but they gave me so much grief, I just order it when they tell me to. So I'm finishing up my cycle on Monday, just ordered the refill, and it'll be here before my next cycle starts. But I have two unopened bottles in my cabinet. My husband tells me to leave one at our shore house "just in case", so I don't have to obsess about bringing the bottle with me all the time, and I'll do that. By the end of the year, I'll probably have another full bottle in excess.
The thing is, when we had the pharmacy, some insurance companies would allow fills early (before the days' supply was 85%), but then settle up at the end of the year. So if Horizon did that, they would cut my supply at 13 cycles a year, thereby only sending it until early October. Which wouldn't be a big deal, since I do take it 21 times in a 28-day cycle, but it freaks me out a little that there are those two or three bottles sitting there - what if there was a fire, or burst pipe, or something? Who's responsible for that $30,000 worth of Ibrance? And then if they suddenly did decide to settle up, I'll need every capsule in those bottles.
I know some people struggle to get their meds on time, and due to a copy issue my first year (they billed the insurance company wrong, and expected me to pay $11,000 out of pocket before they'd send it) I actually got it a day late, but who knew getting it early would be stressful too?
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Shoot, I went to edit and it deleted! My mouse broke and I'm using the trackpad on my laptop, lol - apparently it's more sensitive than my fingers!
aprilgirl, I use Accredo, too - we sold our pharmacy to colleagues, and they're not allowed to get it for me. Have you had an issue with them wanting to refill early? I get calls and texts every 21 days. I stretch it as far as I can (I don't want bottles sitting here, that I would be financially responsible for), but they get annoyed when I don't refill right away. I get phone calls, texts, and emails!
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Ciaci - I’m rather new to Ibrance (only been taking it since March) but so far Accredo has been accommodating to my refill requests. I have yet to get a refill when they thought I was ready for the next cycle. For instance when they called me last Tuesday for a refill, I told them that I would know more after I saw my oncologist on Friday and they said they would call me back Friday afternoon. They never did presumably because by that time, they received a new prescription from my MO. When I dosed down to 100 mg and could not start until I got my pills, they automatically sent it next day without me asking - no shipping upcharge to me. My only complaint with Accredo is that when they get a late Friday prescription, it sits all weekend and isn’t processed until Monday. This happened twice. With the price my insurance pays for these meds, I wouldn’t think twice about delaying my refill. If you get a prickly rep, I’d ignore them and just say to call me back in x days. No explanation needed. One day I will progress and I wouldn’t want to have $30,000 worth of meds go unused.
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RK2020, I see you're in Naples - I'm so jealous!! We have a house in Fort Myers, and came back to NJ two weeks ago. What a difference - everything here is just starting to open up, still have to wear masks everywhere, only eat outside, no hair salons or gyms open yet. I miss Florida!!!!
Luckily, my oncologist writes the script with a year's worth of refills, so I don't have to worry about them getting a script on time. Though maybe that's why they're so eager to fill them, LOL!
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Chico, I had noticed at one point that we are on about he same timeline. It's funny -- I blink and suddently it's been 3 1/2 years. I feel a mushy mix of gratitude for having all this time and overwhelming anxiety to be at this point.
Cure-ious, my DH made a run out last night to the CVS down the Avenue and picked up some baby aspirin. I did a bunch of reading and may start with a double dose of the lower dose. I'm also continuing the I3C. I hope I do get some benefit.
Denny, my 17-year-old daughter decided that we should should bing watch Harry Potter together. She (hopefully) has no idea what an emotional wreck I am right now but boy that's one great distraction. I hope that you can find something to take your mind away a bit.
Hugs, Penny
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Cure-ious this discussion is very interesting and I have so many questions and thoughts running around my tiny mind. Things like if Verzenio is 14 times stronger should we all ditch Ibrance? If Ibrance fails does Verzenio give us enough benefit to take it and should we follow Luce and use it as a mono-therapy? Wish Luce would join in because she is such an inspiration her being so very ill before starting V and then whilst first taking it. Are there any results or even stage whispers about how well Pfizer’s new CDK drug is doing? And then to take NSAIDs or not. To cut out my beloved sugar or not. Gosh I could go on and on but won’t for now however after I get my scan results on Tuesday “I’ll be back” xx
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Chico and Denny - sending you all the best for your upcoming scan and scan results.
Cure-ious and Penny - I will talk to my onc about adding celebrex and 13C. Thanks for the info, I appreciate all I learn on this thread in hopes to keep a progression away.
CIaci and RK2020 - I have had the same experience with Accredro. I start receiving text messages about my order in my 3rd week of my Ibrance cycle. If i don't answer the text for refill, they call and I tell them every time it's too soon, I will call them AFTER my blood test and onc meeting. When my dose was lowered it was on good Friday so they didn't process it until Monday. I had to call a couple of times because they still had the order at 125 but it got resolved and they expedited my rx so I received it within a day or two and could start on time. If the does hasn't changed it works well (with the exception of wanting to fill the next order too soon). I don't want to risk having received it and wasting it or getting charged more for it if my oncologist changes things up.
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Chico, I wouldn't drop Ibrance if its working, but there is quite a range available so that people starting to progress could try upping the strength, before moving to something different
Hope Luce weighs in, she's gotten a good run on Verzenio alone!!
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Chico - hope things go well for you. Ibrance/Arimidex seems to working (now) for me. Not sure if "stronger" drugs are the answer, but maybe a new approach is. Cut back on sugar. I love it too, but I've heard cancer also loves it. Don't substitute with other sweeteners, just cut back. I still consume sugar, but feel better as I've cut back over the years.
This is the 3rd time BC for me. MO thinks each one has been a new cancer, but admits there is no way of knowing since cancer mutates so much. 2009 Left, ER+ , lumpectomy, radiation, tamoxifen 5 years. 52 at first Dx. 2016, Left again which was lumpy/dense, right was normal. Bi-lateral (my choice), TC Chemo 4 rounds, initially anastrozole, then switched to tamoxifen because of joint issues. Joint issues almost immediately. 2019 - tumor in right axilla. Sept 2019 2.5 cm (PET scan), started Ibrance 125 mg and Arimidex. April 2020 CT scan showed tumor had shrunk to 7 mm. I initially saw a surgeon with the 2019 Dx who wanted to wait and see if the Ibrance would shrink the tumor. My MO brought up surgery in June meeting, but as I think about the conversation I had with a surgeon in 2019, the answer was really from a surgeon's viewpoint. But I worry about the nerves, muscles, tendons, lymph glands that are there, that are not in the breast. So I think surgery in the axilla is much more complicated and risky for me than the bi-lateral.
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Here is Tolaney, talking about therapy sequencing- she says at progression she would move patients to Piqray if they have a PI3K mutation but otherwise might try making a single med change, for example from Femara to Faslodex, or from Ibrance to Verzenio.
She also mentions the PACE trial, which has been going on forever and is testing whether immunotherapy boosts the I/F response, but typically gives no hint of what they are seeing- arrgh!!
https://www.onclive.com/view/precision-medicine-ap...
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