Ibrance (Palbociclib)
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Hi guys- everything old is new again! there was some discussion of this drug back in January, so I will re-post
The goal here is to inhibit CCR5, a chemokine receptor protein that is expressed on the surface of some immune cells. CCR5 has a close relative called CXCR4. (Both molecules, incidentally, are used as co-receptors with CD4 to allow HIV to get into T cells as the first step of HIV infection... A natural mutant in this gene is prevalent in some northern european communities which are naturally-resistant to HIV infection). Sounds like COVID might have a similar playbook using these proteins
In addition to Leronlimab there is an inhibitor of CXCR4 called Balixafortide that is already in phase 3 trials in combination with Halaven (eribulin), and the press-release below indicates if they get really good results they are eligible to move forward quickly given they already know about side effects etc from the HIV trials Leronlimab as a monoclonal antibody might have even fewer side effects tho
This phase 3 trial is being tested for patients who already had at least one chemo treatment in metastatic setting, and is HER2-neg MBC, so this is a drug that could come quickly...
https://www.biospace.com/article/polyphor-announce...0 -
Cure-ious,
Thanks for that info. I must have missed the earlier conversation. This sounds very promising -- whichever drug come first.
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Cure-ious, thanks for the article on Balixafortide. I wonder if it's at that stage in trials, if someone could apply to use it under compassionate use, or right to try? Is there something called emergency Indication? I hope that the Coronavirus crisis doesn't prevent progress with these drugs.
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Cure-ious, I knew that sounded familiar and we heard it from you first!
All very exciting!
(Maybe one of those nuts will start selling kits to cure cancer like the ones we're hearing about for COVID-19 and we can get one of these drugs!)
Love from PatGMc
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I do wonder that with this flurry of medical research and collaboration around the world that perhaps a really positive 'oopsie!' comes out of it. Maybe they don't cure COVID, but they find new information/data that solves something else. Like cancer. Wouldn't THAT be crazy!? Or they learn more about triggers and management of cytokine storms, making some of those immunotherapy drugs viable.
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Sondra, I believe that is bound to happen! Having the world's attention focused on medical research can only be a good thing, especially when it comes to immunotherapy.
Love from PatGMc
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Thanks Divine and KBL for the links. I will check them out. I am finding webinars are good due to boredom with staying at home and also I am learning too. Not just mindless TV.
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FYI- I contacted my specialty pharmacy to get my 125 ibrance in tablets and was told that they were Already shipped as capsules. In order to get tablets, I will need to contact my MO and have a script sent to them requesting a change to tablets. This might be different for your specialty pharmacy but I guess that is how they are doing it with accredo pharmacy. I thought, I read on the Pfizer website thatthey would be automatically changed?
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Anewbreath, They will be automatically changed to tablets as the capsules are used up; it depends on which type your specialty pharmacy is getting from their distributor. As far as the doctor requesting tablets, for most insurance companies, they will need to demonstrate a medical reason why you need the tablets over the capsules.
Someone in a facebook group I'm in got the tablets this week and posted this pic. Three blister packs showing days of the week come in the box... confusing for anyone taking it in different dosing!
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When Accredo called me last week, I had already received my new order of Ibrance and they were still the capsules. I asked them when I could expect to get the tablets and they told me the same thing that Ciaci posted. I am hoping they hurry up and get the capsules used up so we can get over to the tablets.
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So now it really DOES resemble bc pills huh? Just need that little plastic holder and we'll be all set!
All together now "ooooooooohhhhhh". That is some fancy packaging!
I doubt the NHS is gonna get these this month - they will probably be the final market for all those capsules.
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Cisco- thank you for clarifying that Information! I really just wanted to have the tablets so I don’t have to eat with my morning pills right away....so convenience. I’m wondering how long it will take to get ride of all the capsules???? I think I will email my MO and ask if he can write a script and see what happens😉. Does any know if the tablets are more expensive?
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Afternoon ladies! On Cycle 6 now as we speak, still at 125mg. Thank you for sharing pictures of the new tablets. Everytime I saw my BS I'd see a diagram of breast anatomy on the wall across from me and after seeing the packaging for Ibrance's new tablets.....well...I did a side by side in paint. We take nipple pills that cause ass blasting. Wonderful!
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When my metastatic breast cancer was first diagnosed in Nov. 2019 my oncologist told me that it could now be cured with pills (Ibrance) and gave me a prescription. My insurance didn't cover it and I definitely couldn't afford the $1,700 quoted price so the insurance company started trying to get it comped. One month later my tumor markers had almost tripled so the oncologist started me on chemo Jan. 3, 2020. I'm still having chemo because the tumor markers haven't shown a significant reduction. Meanwhile Pfizer agreed to provide the Ibrance free of charge. The oncologist keeps telling me that when the tumor markers show a significant reduction I can go on Ibrance.
Chemo has all the nasty side effects. My question is... what side effects should I expect when I change to Ibrance. Also, how long can I expect to be on Ibrance?
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I made the mistake of asking my MO how long I’d be on ibrance. He sort of growled at me, you understand you’re stage 4 now!! Oops. Yes. So from what I’ve read here, we can stay on it a long time, as some of the ladies have. Until something changes, and the meds will change then. A pill a day, easy to do. The se’s vary from month to month, mostly not bad
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pennythepest, my oncologist told me I'll be on Ibrance until something better comes along, no way to be more definite than that. I know people who've been on it since the trials, in 2015, I believe, and are still going strong. Side effects - I never had chemo, so can't compare, but for me, the side effects have been easy. I'm 3 months short of three years on this drug, and right now, I have no side effects at all. I was lucky, the worst side effect I had was fatigue, which got pretty bad at times.
My concern is where you wrote: "my oncologist told me that it could now be cured with pills (Ibrance)". I sure hope your oncologist didn't use the word "cured", because MBC can be treated, managed, and/or mitigated, but absolutely not cured.
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Ciaci - Glad you jumped in there with Penny and clarified, as I also picked up on the “cured” comment. I do hope that was maybe a misinterpretation? If not it might be wise to have a word with your team and clarify your diagnosis?
Many of us do well on Ibrance / Letrozole. There are side effects which vary, but are manageable - and I have had chemo, so understand how that goes. The norm is that oncologists won’t give a timescale, because they just don’t know how your body will react. It’s all educated guesswork.
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Cross posting---
Ok, so venting. I had a tele conference visit with MO last month-- phone call as I do not have video set up yet. My MO moved my monthly injections to coincide with this months office visit, making the injections 10 days late. I think I posted on here about the Lupron being 10 days late and did you guys think that was ok. I have appointment for this upcoming Monday for the office visit, injections, Port flush, and monthly labs all at the same time. So today I get a call from the receptionist. We are doing office visit by phone again (I still do not have video capabilities). I said, "how about the injections". So we are doing phone call at 10 am and injections and labs at 1pm (I will go to the office at 1pm). So I am 10 days late on my treatment (Lupron) for no reason--could have went when due. And this month I still don't get to see doc since I do not have video. The receptionist is very friendly so I asked her will this be how we do office visits from now on. She said if the patient is ok with it, probably. If a patient pushes for an in-office visit, she will schedule that. She said the doc is seeing the chemo patients still. And since I am not receiving IV chemo, my visit can be done virtually to keep doc "clean" for the patients she really needs to see. I get that and it makes sense, just frustrating. I would like to SEE my doc every once in a while. I wonder about progression---I think at that time I should have a real office visit. I hope my May scans don't get cancelled. I will ask her on Monday phone call.
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I am so sorry Candy. That is so frustrating. I think as a stage 4 patient that really wants to see her MO that makes you a patient that the MO really needs to see.
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Yesterday I had my regular appointment for faslodex injections. All staff wearing scrubs and using disposable masks, gloves and aprons. They were carrying antiseptic wipes and wiped everything they touched. I felt very protected. I do not see my oncologist monthly, but I was offered a virtual appointment if I felt I needed to consult her.
I collected my Ibrance prescription, it is still in capsule form. I was hoping for tablets ,to be free of the tyranny of taking it with food, maybe next month.
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Has anyone heard from LovefromPhilly? I haven’t seen any posts from her for over 3 weeks and was wondering where she was and how she’s doing in the midst of the pandemic.
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I think Mel or Mara had been in touch with her - she is ok, just a lot of fatigue right now. Ive noticed she logs in once in a while.
Denny - no tablets here either, and I had another letrozole brand change to Accord (from Teva. which had only been for a few weeks from Sun). At my H they are now doing a separate goserelin injection clinic from the usual hassle of having to go up to the chemo floor to get it. SO much easier and faster with a booked slot and no waiting. There was a feedback form as they are considering making this permanent - you bet I filled that out as positive!
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I was kind of concerned about Lauren. She had a wisdom tooth extracted and was due to have more done. Check in time Lauren.
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Took my last capsule in Cycle 2 at lunch and am feeling lower than slug slime. Other factors probably bearing on this include (but are not limited to) recent days of cold, wet, dreary weather, the political scene and cabin fever.
What are your corona virus quarantine regimes? I have not gone out for a month, only to the onc for blood work and a Faslodex injection. I'm eating (too) well and admit to getting next to no exercise. I put on a mask to go for a walk in the neighborhood and poop out after a few blocks.
Must get dressed (at least from the waist up) for a Zoom cocktail party. The mere thought makes me more tired.
Tina
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Aww this is just too hard Tina, Candy et al. Hang in there...I had an unexpected call today from my GP who is lovely. They were just checking in with” shielded “patients. She knows me well enough and was a light touch...i.e. anything you need, just contact us and how are you? I asked her the same question and sensed, stretched and stressed.
Hope Philly can pop in and let us know she is ok?
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Hello.
This is my first post on the site - so far I have had very little communication with other cancer patients - so this is all a little new for me.
I was diagnosed with Stage 0/Grade 3 breast cancer in 2015 at 42 - went through a Mastectomy and onto Tamoxifen and made the assumption that was the end of it for me. Last Oct (at 46) I was diagnosis of Metastatic Breast Cancer with tumors on my liver (rather large at 5 cm). Still feeling pretty good about my long term survival potential (I appear to be cursed with eternal optimism) as there are so many new drugs out there - but not nearly as nonchalant as I was the first time around.
I just finished 6 months of Abraxane with pretty minimal side effects (a bit of neuropathy, annoying leg swelling, hair loss - obviously and occasional tiredness - but I managed to continue working 50-60 hours a week and leading my life more or less like normal). My tumor markers went from 2500 to 80 and they expect it to come down a bit more following my last round of chemo - so getting close to normal levels. End of chemo CT scan yet to come to confirm continued decline in tumor size - but I feel soooo much better than I did last fall when I was diagnosed that I am pretty hopeful (I was incredibly nauseous just prior to diagnosis and managed to drop 15 lbs with no effort at all). For the next stage of my treatment I will be starting Ibrance. I am still not sure of the combo drug I will be on with it (I am pre-menopausal) yet.
I am hoping to hear from some of you as to what you have experience on Ibrance compared to Arbaxane? I am also hoping to have a conversation with my Oncologist about whether a hysterectomy with ovary removal might be a better option than taking added drugs to simulate Menopause and I am curious if anyone out there has done this and what you can tell me about your experience.
Thanks!
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Tina - I felt great at the end of Feb and March cycles but boy howdy I was dragging ass through the last week of the April cycle and my last day (and the first day off) I was walloped with fatigue. At first I thought it was mostly the letrozole brand change mid cycle, but after seeing so many posts about fatigue from ladies on all sorts of different treatments, I wonder how much its driven by the scary news cycle and greater restrictions on everything. Its hard to recharge on good days/slight fatigue days when you cant go out and window shop, meet a friend for a coffee/drink, go do an aerobic activity, to help get you through the bad days. A walk at night to avoid people, while still one of my favorite activities, just doesn't quite cut it like going to the pool and sauna after, or getting a massage.
Karen - Mel has a Philly update on the living room thread.
PNWgirl - you may want to check the liver mets forum as I believe someone over there had a hysterectomy. The zoladex shots are ok (well, the nurse I got this month did a real ham-fisted job of it, but whatever), its just a pain to have to go every month to get them!
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Welcome, PNWGirl, your eternal optimism will serve you well on this journey! We're happy to have you join in our Ibrance Dance where we often find the funny in things that would knock others to their knees. Don't ever stop looking for the funny! It's always close by.
I was first diagnosed with BC at 44 and didn't have lots of confidence I'd live to be old.........but I did! That was 1994 and I've had BC off and on (mostly off) since then. I'm 70 now and had the first metastasis 8 years ago. I have friends who had metastasis two decades+ ago! With Ibrance now and the new exciting drugs on the horizon I expect to see you here when you're 70! I'll be typing slower but I'll still be here too!
I had a hysterectomy after an ovarian scare which turned out to be adhesions from my TRAMflap reconstruction. It was the full-on cut you side to side one which I don't even know that they do any more. Most people I know got the laparoscopic one where you're up and about in no time. I laid around for about a week after mine mostly because I let myself get constipated. I'm a real believer in getting those ovaries out! Then they'll put you on an Aromatase Inhibitor or Faslodex because they're the companion drugs to Ibrance. You can do all of this because you've already made it through the hard part which is that kick-you-in-the-head diagnosis!
I'll be over here rooting for you and praying that you have peace of mind as you gobble those little orange capsules, my friend!
Love from PatGMcOld!
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Welcome PNWgirl....I ‘lurked’ around these threads for about six months before actively participating. Like you I didn’t have, or choose to join a physical support group and I wanted to make sure for the most part that the people here are sensible even though we are all pretty stressed. I can honestly say this is probably my best support mechanism. Folk are informed, realistic and also optimistic, as our dancing friend Pat says, which I find very reassuring. We can also choose to share when things are not so great and someone will always jump in and pick you up I’ve found!
I too was diagnosed primary age 43 in 2007 but the chemo pushed me into chemical menopause and that was that. 5 years on tamoxifen followed. I did ask about hysterectomy after an abnormal smear test, but was told not necessary - still not sure I agree with that. So can’t help you there.
I was re diagnosed in spring 2018 with a tumour on my chest wall next to my mastectomy site and mets cells in the lining of my lung, plus some lymph node involvement. A biopsy showed the same pathology as before. Ibrance ( palbociclib) and Letrozole is my first line which has seen all visible signs of the cancer disappear on scans, so I am NEAD...no evidence of active disease. We have no idea how long that will last, but I’m very grateful to have responded so well, with fairly manageable side effects, which are not cumulative but can vary from cycle to cycle. Also don’t worry if your dosages and timescales need to change. I’m on 75mg Ibrance and have 2 weeks off each cycle as my body just couldn’t cope with the toxicity....and that had no correlation to the way I felt either - feeling good, bloods crap and feeling run down, bloods good...There’s a lot of shrugging from my nurse team
Some of us are in various different threads, some post lots and others just pop in and out occasionally. Whatever is best for you!
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Hi, PNWgirl, sorry you qualify to be here, but so glad you found us! Rest assured that anything you could possibly be feeling - physically or mentally - has been experienced before, and someone here can talk you through it.
It is exactly three years ago today I heard those fateful words: "It's cancer." It would be another six weeks before they decided it was Stage 4, when the tumor on my spine was visible on the took-forever-to-get-insurance-approval-for PET scan. My husband suspected so, way before that, because my first indication that anything was wrong was a dimple noticed during a routine mammogram screening - the tumor had broken out of the duct and attached to the skin (automatically qualifying it for Stage 4 status, but my then-oncologist kept insisting we had to wait for a scan). Doc had already scheduled me for chemo, and had a port inserted - was expecting to start something called the Red Death? - I had bought a pattern for a head scarf, and some fabric... was emotionally prepared (I thought) for chemo and all the horror that would bring. Then the scan showed the tumor, and suddenly the oncologist wanted nothing to do with me; he told me there was nothing that could be done, and that I should just go home and be "comfortable". As we left his office, my husband told me to call my primary doc (who was wonderful) and ask her to recommend somewhere for a second opinion. She sent me to Sloan Kettering, and the rest, as they say, is history.
Had the port removed (I hated it and everything it represented), started on letrozole and Ibrance, and had a followup scan at the six month mark. Was NEAD, and have been ever since. August 1st will be three years on Ibrance/letrozole for me. I have no side effects any more, the only lingering one was fatigue, but I got in the habit of walking a mile or two every day, and that took care of that. I could not have gotten through those early days (years?) without the support of some amazing people here, and I will be forever grateful my oncologist sent me to this site!
I wish you, and everyone here, success and peace. Love you all!
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