Ibrance (Palbociclib)
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Amarantha, I decided the Ibrance would work from that very first capsule. I was scanned at 3 months and had a remarkable response. You don't have to wait for a scan....believe your eyes, my friend!! We're so happy for you!
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I agree with Pat, Aramantha! Some have seen remarkably quick improvement! I had some rib pain which appeared to diminish/disappear after the first cycle, too. Believe!
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hi. I will be starting Ibrance tomorrow. Can you take it about 6:30 ,7 pm. I took letrozole for 2 years now it’s not working. I’m off the letrozole. I will also be getting fasoldex shots. Suppose to get my first on one nov 29. I’m scared to take these pills I hate getting side effects, I was okay on the letrozole. I’m already so tired I don’t know how I can get any more tired. Also I take tramadol 50 mg 3 times a day for pain. It does not make you loopy. Thank you. Rhond
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h. I’m glad the Ibrance works for you. I have to star it tomorrow and I’m scared to take it. Can you take it about 6:30 7 pm. Also I’m going to get fasoldex shots. Getting in gym first one on nov 29. Hope I will be okay on these meds. Thanks rhond
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Joyner, that handsome man is my son. His beautiful wife is certainly my daughter. We had the accent thing going on at the wedding. Her family is from Oregon. My family is from the Northeast but my husband's family is from NC. Even though DH has no accent at all, his sister and her daughter (my niece) have very twangy accents. No one cared or mentioned it.
Tychad, I take Ibrance at 6:30 or 7 every night with dinner. It needs to be taken with food. The side effects are nothing like "regular" chemo. I'm down to 75 mg but have no side effects at all. My white blood count is always low but not low enough to interrupt treatment. You'll do fine.
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Tychad, yes, you can take it at 6:30 or 7:00 as long as you take it no longer than 30 minutes after a meal. They also found it works well with a fatty meal. That is when we eat at our house so that is when I take it. The only problem you may find at that time is some people have trouble falling asleep. That is the norm for me so it doesn't change anything.
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Tychad, welcome to our little Ibrance corner of the world! Many of us have fatigue with this drug but it sounds like you already know what that's like. One great thing is that there are different doses. My doctor starts every patient on 100mg which is what I've taken for 14 cycles (started 15 tonight, I think!) Most people here have started on 125mg and others are down to 75mg. 125mg was the amount given on the trials so that's the go-to dose, it seems. Nothing is written in stone and you can insist on changing if your current dose seems too high.
I take them with my main meal at night. I try to drink lots of water throughout the day as I want to protect my kidneys. I also take Turmeric because I had pain in my ligaments when I was on hormone therapy before. So far, I don't have as much discomfort as before so I guess it's working.
The main side effect I had in the early months was sores on my tongue and lips. Since I don't like the taste of the Magic Swish drugs, I ate natural Greek (Stonyfield brand) yogurt and it cleared them up pretty quickly. In the later cycles I've had some nausea which I treat with one-fourth of a Phenergen pill. The nausea is actually the result of phlegm and I feel much better if I let myself just go ahead and throw up. I don't think this is a common side effect. I have nightly indigestion which Tums fix. (They also are the only supplemental calcium I take and my counts stay within normal range. I take XGeva which depletes calcium.)
I saw someone on the Facebook Ibrance page who has been doing the Ibrance Dance since 2013. So grab your partner and spin around - we're all in this for the long haul!!
Have a good week everyone! My prayers for you will be going up shortly.
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Hi all!
It's been awhile since I posted, though of course I read your back-and-forth every day. I've been looking over the abstracts for the San Antonio breast cancer meeting, starting up Dec. 5th. Most abstracts are useless in that they state the topic of investigation, but don't mention the results. A couple of the evening lectures will be live-streamed, and that may be some TV worth watching. Here is one abstract that I found interesting; it cites pre-clinical data that a 3-way treatment combining Ibrance with an mTOR inhibitor drug plus Faslodex/fulvestrant is highly efficient treatment for HR-positive breast cancer, and cites a phase I clinical trial, called PASTOR, that is underway to study this, presumably as a new first or second-line treatment:
Combined inhibition of mTOR and CDK4/6 is required for optimal blockade of E2F function and long term growth inhibition in estrogen receptor positive breast cancer
Oelmann E, Michaloglou C, Crafter C, Siersbaek R, Delpuech O, Curven J, Carnevalli L, Staniszweska A, Polanska U, Cheraghchi-Bashi A, Lawson M, Chernukhin I, McEwen R, Carroll J, Cosulich S AstraZeneca, Cambridge, Cambridgeshire, United Kingdom; CRUK Cambridge Institute, Cambridge, Cambridgeshire, United Kingdom; University of Bradford, Bradford, Cheshire, United Kingdom
The cyclin dependent kinase (CDK) –retinoblastoma (RB) -E2F pathway plays a critical role in the control of cell cycle in estrogen receptor positive (ER+) breast cancer. Small molecule inhibitors of CDK4/6 have shown promise in this tumour type in combination with hormonal therapies, reflecting the particular dependence of this subtype of cancer on cyclin D1 and E2F transcription factors. mTOR inhibitors have also shown potential in clinical trials in this disease setting. Recent data has suggested cooperation between the phosphatidylinositol 3-kinase (PI3K) pathway and CDK4/6 inhibition in preventing early adaptation and eliciting growth arrest, but the mechanisms of the interplay between these pathways have not been fully elucidated. Here we show that profound and durable inhibition of ER+ breast cancer growth is likely to require multiple hits on E2F mediated transcription. We demonstrate that inhibition of mTOR using the mTORC1/2 inhibitor vistusertib at 300nM causes a >50% decrease in cyclin D1 protein levels and RB phosphorylation in three cell lines. At these concentrations, vistusertib treatment also elicits marked effects on E2F mediated transcription, causing changes in the mRNA levels of 28 out of 43 (65%) of a selected set of E2F target genes. Combined inhibition of mTOR, CDK4/6 and ER delivers profound and durable regressions in breast cancer cell lines and xenografts (110.2% tumour growth inhibition at day 48). In vivo data show, that over a period of 58 days, tumours failed to re-grow in the presence of the triplet combination compared to either agent alone, suggesting, that the triplet is necessary to maintain growth inhibition. Furthermore, we show that CDK4/6 inhibitor resistant cell lines re-activate the CDK-RB-E2F pathway, but remain sensitive to mTOR inhibition (EC50 52.7 nM in parental cells vs 39.6-73.3 nM in a number of palbociclib resistant cell populations), suggesting that mTORC1/2 inhibitors may represent an option for patients that have relapsed on CDK4/6 therapy. A Phase I study (PASTOR) combining the dual TOR kinase inhibitor Vistusertib with Palbociclib, and Fulvestrant is underway to explore safety and efficacy of the triplet combination in patients with metastatic breast cancer.
Session: Poster Discussion: Signal Transduction and CDK4/6 Inhibitors (7:00 AM-9:00 AM)
Date/Time: Thursday, December 7, 2017 - 7:00 am
Room: Stars at Night Ballroom 3 & 40 -
Cure-ious- Sounds interesting. How do you live stream it? Wonder why they are not using everlimus in this study-or maybe they are in another study. Is Vistusertib a very different drug? Is it know why some people's cells become resistant to CDK4/6 and would that be able to be discovered before therapy or when the palbo /fulvastrant combo fails you would add the mTOR kinase ?
Have you heard anything about using Abemaciclib vs Palobociclib or when Palbo fails?
Nice to hear from you.
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This is a poster session, so its preliminary data. With mora data the authors may get a paper session next year. Its mostly a study cell lines in the lab but they mention starting a Phase 1 (dose escalation) trial. It will be several years before there is useable data for us. Encouraging but very early results.
Jo
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Tychad, hi there! Please don't be afraid of the side effects of this drug - for me, the anticipation was far worse than anything Ibrance has thrown at me! I start my fifth cycle today (I've been on 100mg from the start), and I've had exactly one canker sore, and fatigue - that was it. And I can honestly say, the fatigue is pretty much gone.
If and when a side effect comes up, there are ways to deal with them - this forum has some amazing women, and whatever it is, someone will have already have had it, and dealt with it!
Wishing you and everyone here an easy, successful time on this drug!!
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Jaycee...I LOVE the photo, the dress is so sweet and simple!
Grannax....I definitely would not be allowing myself to be bullied into an exercise program that's far too much for you. Apart from the travelling, you have more than enough to contend with. Some people just don't get how exhausting all this is and that our bodies are no longer up to it, no matter how much we wish they were.
I've been having a laugh about you girls with your southern accents. It would be interesting if we could all somehow type in our accent, if you can understand that! so that we can hear the different ways we all speak, because my Aussie accent would be so different from all of yours!! Not that mine is a very strong Aussie accent but it wouldn't sound like any of yours!
Thanks everyone for your kindness about my situation. I do feel sad about it. I haven't told my husband that I have any other reason for living away from home than that I like to be independent but in my heart I can't feel the same about him since his latest lie because I've spent forty years being lied to and I've overlooked it but this time it's different. I was going to find out that he lied anyway so I don't know why he tried it on again! It was just one lie too many and if he can continue to be secretive, live a double life and lie to me when I have Stage IV cancer it means I can never trust him again. I tried hard to trust him this time because I thought surely he'll do the right thing. I just don't understand but I'm trying to act the same as I always have to keep everything as smooth as possible for all of us.
Hugs to all of you who are having a tough time and waiting for results and all the usual things we support each other through. I love you girls so much.
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Jaycee...Beautiful photo!! Handsome son and beautiful daughter-in-law!!
Leapfrog...Hang in there! How are you handling Thanksgiving?
Still feeling ok with my Taxol and still rooting for all you who are still on the Ibrance train! Sure wish I were on it with you.
Hope
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hi. Thanks for the advice. I’m scared to take the Ibrance but I’m taking my first pill tonight at 7 pm. I also am on 100 mg. Bring scared is worse than anything. Hope all goes well for us all. If you have any other advice here is my email address. Rjl58@hotmail.com. I would like to talk to someone through email . It’s eaiser for me. Thanks Rhond
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Leapfrog, I wish this could have been different for you but I'm thankful you have options and can live your life independently. I'm glad you have raised such a precious son and that he will be there for you. Someone I love is going through a betrayal and it's hard to watch. I do know that people get stronger at the broken places. Just know that you have supporters out here praying for you.
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Amarantha, trust the results you are seeing - this is great news and worth celebrating!
I had a CT scan with a phone call scheduled Friday to get results. Two months ago I had my first scans after starting I/F, and the results were mixed. No change or reduction in lung, lymph, and bone mets, but inflammation in my ribs and a suspicious 6mm spot appeared on my liver. MO wasn't convinced it was progression and ordered a follow up scan, which was today. I'm actually feeling much better ~ at my scans two months ago I was getting intermittent pains in my sternum and ribs. Now, no pain. MO said the liver spot, if met, would be too small to feel any symptoms, but it would be a game-changer in my treatment. I'd probably follow Hope to the taxol thread. I'm taking a river denial cruise to get me through the holiday.
Giving thanks for all you wise, compassionate women this Thanksgiving. xoxo
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Nonahope...we don't do Thanksgiving in Australia so that's not a problem for me but thanks for thinking of me.
PatgMc....thanks for your thoughts. I feel a lot better today, although I had a sleepless night last night.
I ended up emailing up my husband. We communicate more effectively that way and I did tell him that I need time and space to lick my wounds for a while after this latest betrayal. When I came back to the apartment yesterday after one night at home he kept texting me wanting to arrange to come and eat dinner with me every night and was quite miffed when I said I want to be alone. So that's why I emailed him to get him to understand that he was smothering me. After years of neglect he can't make up for it in one easy step and I need to be alone to meditate and contemplate my new life, which I will enjoy if I can do it on my own terms. I am completely optimistic that my cancer will remain stable but it's asking a lot of my body to absorb all this stress as well as fight the cancer but I'm determined to have as many years as possible to live life the way I want to and not be dominated. He seems to be getting it. He does have insight if I point things out to him.
But this is nothing compared with what a lot of you girls are going through and I send you all lots of love and hugs and happy Thanksgiving wishes. (We don't do Thanksgiving in Australia).
Tychad...there's nothing to be afraid of with Ibrance. Its bark is worse than its bite. In other words, the side effects are exaggerated in almost everything you read about it. I also take Tramadol, 200mgm a day and the Ibrance doesn't make it any worse. In fact, I find that the weeks I'm on Ibrance, my bone mets pain is less than it is during the two week break I have to have from Ibrance. Ibrance seems to enhance the uptake of painkilling drugs so you have that to look forward to! I notice a lot of difference. Also, you do get tired, yes, but you kind of get used to it. It's like when you have a new baby, you just work through it. It does hit me around half way though the last week of the three weeks I take it but it's nowhere near as bad as it's made out to be, I don't think and I've been on it since January this year now. When I was first told I was going on it I was scared too as the oncologist I had then played up the SE so much it sounded terrible. I changed oncologists for other reasons but the one I have now doesn't make a fuss about it. I'm taking it with Letrozole/Femara on a trial in Australia for women who are Stage IV de novo with bone mets who have had no other treatment.
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Tychad, I felt the exact same way as you did just two short months ago.. I'm now on my 2nd cycle and my worst side effect is the low blood count.... I'm remembering something someone said to me here on this thread.. I don't remember who.. but thank you... be grateful for Ibrance.. 2 years ago.. we wouldn't even have had access to it.... you can do this!
Amarantha, I was shocked that my some of my big symptoms had subsided after just 1 cycle of Ibrance... so I also say.. go with it! I had much less coughing and that nagging tickle in my throat has subsided.
Leapfrog... yeah... oh yeah
To all of you here.. you don't know how you've lifted my spirits... to you I am very grateful this Thanksgiving....
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Jaylea...I'm so hoping your scans are good! I was really bummed being taken off the Ibrance, as I was feeling really good -- no pain etc. Of course, my reason for being kicked off was because of the breast cancer cells in the bone marrow -- the Ibrance wasn't working.
Leapfrog...I didn't know that Thanksgiving wasn't celebrated in Australia....I learned something new!! And, I will thank you for that and all your informative posts!
Glad you are staying strong in your current situation.Hope
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Just a quick note to let you all know, my test results came back negative. So for now, all is stable and I am most grateful for that. I will get more info I believe at my MO appointment on Tuesday. I've been off Ibrance and just on letrozole since August 1st, so don't know what he will recommend. Unfortunately, I'm feeling lousy right now, stomach upset since the sigmoidoscopy and very tired from no sleep. It's probably all related to stress. And, my daughter's family is here for the holidays. Pray I get through it
I do want you all to know that not everything on a PET scan is cancer and there's lots of hope out there. Keep believing and just pray for all of us.
Faith
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Faith....Such good news to be thankful for....wishing you a blessed Thanksgiving!
Hope
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faith- super good news. Perhaps a sleeping pill for a few nights and some good sleep will make all the difference.
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Tremendous news, Faith!! And a good reminder, even letrozole alone is a strong drug...
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Faith, the indignity of a Sigmoidoscopy is enough to get a girl down for a while! I pray that you recover soon and I'm thankful for your stable scan. I wonder if your doctor might consider one of the new drugs similar to Ibrance. That's what mine is considering should I have progression after Monday's scan. He spent last week at the big oncology meeting in New York and expected to learn more about those and about using the PARP inhibitor for BRCA1+ people like me. I'm thinking it's pretty great the you have been progression free with only the Femara. About the lack of sleep, do you have any Phenergen (anti-nausea)? I find that just a fourth or half pill gives me very sound sleep so it might work for you too.
Happy Thanksgiving to you Americans and Happy Non-Thanksgiving to everyone else!
Love from your friend, PatG
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Looking for a new supplement? this story came out today:
Cancer researchers seeking non-toxic alternatives to harmful chemotherapy are reporting a highly significant result for a humble cold remedy.
N-Acetyl cysteine -- or NAC -- is routinely used as a dietary supplement and as a decongestant given to children to ward off a cold.
Now, clinical trials in the US indicate the cheap, over-the-counter drug, is a first rate inhibitor of the tumour stroma, a cell compartment which is fundamental to the spread of cancer.
The results, published in Seminars in Oncology, confirm a long-held theory that cancer cells are being sustained and strengthened by the presence of MCT4, a protein which 'brings them' energy, in the form of lactate, from neighbouring cells.
Patients taking high dosages of NAC saw their levels of the 'transporter' protein fall by more than 80%, drastically reducing the ability of the cancer cells to feed off neighbouring cells.
Professor Federica Sotgia, of the Biomedical Research Centre at the University of Salford, UK, explained: "In cell cultures in the laboratory, we had seen a near complete reduction in MCT4, but to achieve such a substantial result in breast cancer patients is extremely exciting indeed."
The team, which includes Professor Michael Lisanti, of the University of Salford and US-based Ubaldo Martinez-Outschoorn, MD, conducted a 'window trial' on 12 patients awaiting surgery for breast cancer at The Sidney Kimmel Cancer Center (Thomas Jefferson University), in Philadelphia.
Patients were given maximum daily dosages of the over-the-counter drug for three weeks between diagnosis and surgery. Tumour tissue biopsies were then taken before and during surgery and key biomarkers, including MCT4 and K167, were measured post-surgery.
K167 levels fell by 25% and MCT4 levels were reduced by approximately 80%.
"High levels of stromal MCT4 are extremely worrying, as they are linked to aggressive cancer behaviour and poor overall survival, so this is very encouraging result," explained Professor Lisanti.
"Our idea was to repurpose an inexpensive FDA-approved drug, to examine if its antioxidant properties could target the feeding behaviour of cancer cells. To be able to inhibit MCT4 protein expression, in a non-toxic way, is huge step forward."
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Faith I'm so pleased about your results but sorry you're feeling so awful. Just take it easy over your holiday season (which we don't have in Australia, as I've been informing everyone!!) . You're in my prayers that you'll soon feel better and get through the festivities.
To catch you all up on my ongoing story. It's my birthday today. I haven't got any older, by the way. I've decided to stay 67 for the foreseeable future until such time as I think I might take it up another year. I did this when 50 was looming. I stayed 47 for five years haha. Got away with it, too! My husband is being really good about our new situation and he and my son came to the apartment to spend the day with me and to rearrange all the furniture to make the space more workable as it's a tiny little place. I'm happy to report that my husband has redeemed himself by accepting that I'm happier like this and that's what he wants for me. It's such a relief to me that we can be friends. Thanks all of you for giving me support when you're all dealing with serious situations of your own.
Cure-ious..that's a good point you made about Letrozole!
I've been thinking about why we're all so scared when we're first told we need to take Ibrance. It seems that the SE must have been exaggerated somewhere along the line. For me, it was the first oncologist I went to when I was a novice cancer patient who scared the life out of me about it but I discovered later, as I began to learn more for myself that she, herself, either didn't understand it or was trying to put me off it. She has studies of her own that she does and doesn't like to recommend "her" patients onto a trial somewhere else, possibly because there's something about their particular case that suits her agenda. I'm sure that was the case with me. This is so unethical! I'm not saying this would be a common situation; I'm sure it's rare but when I looked at the Ibrance site there was quite a lot about male pattern baldness, chemo-like nausea, fatigue and lowered immune status. When I went to see the trial consultant he assured me that male pattern baldness is so rare as to be hardly known, nausea is nowhere near as bad as with chemo, there is fatigue and there is a lowered immune status but he told me that, even with Grade 4 neutropenia, which I have, for some reason they don't see the same incidence of serious infections as they do with chemo. My hair has thinned out a lot but he told me that's more due to Letrozole than to Ibrance and it's not male pattern baldness, it's just unhealthy, fluffy , dry hair. At least I have hair, I tell myself a hundred times a day and thank God for that but if I do need chemo one day my life will be far moe important than my hair.
I just thought I'd share those thoughts because we see so many newbies to this thread who are scared stiff of going on Ibrance and I feel for them because there's no need for such fear. Where is it coming from? Does anyone else have thoughts on this?
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Faith, great news!! Good luck tomorrow, Jaylea, and on Monday, PatMc!
Cure-ious, I just went online looking for the N-Acetyl cysteine, and the prices for the supplement vary radically. Do you have any reason to know whether one brand is better than another? I thought I would order some through Amazon Prime and get going on this. I can't find anything online which indicates that I should not take this. The article you quoted notes taking "maximum daily dosages of the over-the-counter drug". I wonder if this is the maximum dose as suggested on the bottle or some very elevated dosage overseen by the trial doctors? Thanks for whatever additional input you may be able to provide and for all of the wonderful guidance you have provided to us all.
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Cure-ious...That sounds very promising! So, what would the brand name of these products be?
Leapfrog...It sounds like you, your husband and son are in a good place right now.
I wasn't so much afraid to take the Ibrance/Letrozole, just worried about what side effects I might have. Except for the first month, I was pleasantly surprised with practically no side effects.Wishing all who celebrate, a very HAPPY THANKSGIVING...and HUGS to those who don't!
Hope
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Wishing everyone a Happy Thanksgiving! This year, and every day forward, I am simply thankful for this day and all it brings.
I had my bloodwork done yesterday, and passed enough to start my second cycle of Ibrance. Back to the fatigue, but I'll take it -- I had pain relief while on it, and I can only believe that is because the tumor in my liver is shrinking away from the rib cage.
Tychad, I felt like you just last month. And, the only SE I had was the fatigue and some indigestion after dinner, which Tums fixed. I was disappointed when my counts went low and had to wait a week to start the next cycle (yesterday), but everyone here is so supportive, it doesn't seem like a big deal. I'm on the 125mg dose, there is plenty of room for adjustment.
All the best for all of you!
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Thanks for posting that about NAC Curious. I've been reading everything I can on the subject. About the only contraindication is a theoretical interference with any type of therapy, such as radiation or chemo, that relies on the creation of free radicals, as NAC is a strong antioxidant, and may reduce the oxidative stress that is meant to kill the cancer cells.
They used 600mg/ 2x daily plus, and I recall weekly IV infusions of NAC. The 600mg 2x daily was on days the patient didn't receive the infusions. I believe it was done for 2 weeks, then they rebiopsied the tissue and examined the activity of MCT4. It's hard to say which part of the treatment, oral or IV is the most effective or necessary. That's another subject, oral availability of NAC to research.
Personally, I think I would use the cheapest, reliable brand name of NAC I could find. It's not an overly complex substance, its made from a modification of an amino acid. Probably vitacost brand would be the cheapest and trustworthy.
As for safe dosages, NAC has been studied for months of continuous treatment with much higher levels than 600mg 2x daily, so that dosage shouldn't be a concern.
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