Ibrance (Palbociclib)
Comments
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Candy- There are several major cancer meetings each year, which this tends to be when we hear the latest about promising trials- some of these include Miami Breast Cancer Conference (early March, this was just recently completed); American Association for Cancer Research (AACR, this includes some of the more basic cancer-releated research and just a bit about clinical trials; its at end of March and I put a link below to the online abstracts for this year); American Society for Clinical Oncology (ASCO, which is at end of May, see link below), where all the big clinical trials results come out; European Society for Medical Oncology (ESMO; end of September, very much like ASCO; they have a breast-cancer specific workshop in early May) and San Antonio Breast Cancer Conference (SBCS in early December). There are also workshops that specialize in breast cancer only, but these are the meetings where you can be assured of hearing about any major advances.
AACR2019:https://www.aacr.org/Meetings/Pages/MeetingDetail.aspx?EventItemID=174&DetailItemID=928
scroll down the Subtitled: Embargoed Abstracts and Online abstracts and click on the first link they provide, to the online itinerary planner- there you will find a search-able abstracts and list of all the talks
ASCO2019:https://meetings.asco.org/am/register-submit-abstr...
ESMO2019:https://www.esmo.org/Conferences/ESMO-2019-Congres...
SBCS2019: https://www.sabcs.org/2019-SABCS
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Thank you Cure-ious!!!! Again. This is what I wanted---to be able to research some on my own. Knowledge is Power!!!!!
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Thanks so much, as always, Cure-ious!
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NettaGER, great hearing from you and even greater that you're doing so well. We all need to hear good news stories like yours.
42young, welcome. Sorry to hear about your MO change right out of the gate, but I have faith that you'll love and trust your new provider.
I got in Monday for my esophageal biopsy and early results are malignancy. That's all my MO needed to hear to line me up with treatment. It's an aggressive plan but I've been off treatment for a month and cancer is on the move. She's setting me up with Gemzar and paclitaxel (I think, she was talking fast and I was writing slow) every 3 weeks for 3 or 4 cycles. So now I need to research that treatment plan and line up some headwear. Sounds like an intense regimen, but if it works and knocks everything back I can eventually go back on a hormonal.
Sending love and support to all my Ibrance dancers.
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Thanks everyone again for your words.
Jaylea, sorry about your biopsy result. I hope treatment will begin soon & you will feel better!!
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Cure-ious - thank you for sharing the excellent explanation of the "PACE" trial - and the listings of all the important conferences. My Doctor also has a masters in Epidemiology and does a lot of research, in addition to participating in numerous clinical trials. She was involved with the initial Ibrance trial, and when I joke with her about Pfizer's stock price she covers her ears. Each year she presents at the various national and international conferences. I gather my information by watching her slides or her presentations. Unfortunately I have to keep a list of all of the conference dates, so I know when I can and cannot schedule an appointment, however most of the time I see the nurse practitioner. Fortunately my Doctor is on top of all the latest information and specializes in MBC patients. The San Antonio conference in 2017 was the first time I heard about the "PACE" trial, since then not much has been publicly released. She is currently on a three month research sabbatical, but when she returns I will press her for more details on the trial.
Looking forward to Spring !!
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Nettager, Congratulations! You are pretty close to being able to touch people with a finger and cure them! I'm getting in line!!!
Love from PatGMc
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Jaylea, when you say the early results show malignancy, does that mean there could be some doubt? I'm going to pray for that.
In the meantime, I'll be praying about the Gemzar and paclitaxel. (Is that Taxol or Taxotere?) My first MBC was an inoperable tumor on my chest wall for which I had 6 cycles of Taxol and Carboplatin. The tumor completely disappeared and I thought of myself as cured until the bone mets showed up in the fall of 2016. (I had about 18 months on Femara after the CT but quit that due to side effects.)
I'm expecting magical results for you, my friend, and look forward to your updates here!
Love from PatGMc
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Has anybody had this problem? Usually my specialty pharmacy is good about making sure I get my Ibrance on time. I was supposed to start my 21 days on today and haven't received my Ibrance yet. They kept saying they hadn't got the order from my MO. She assured me she sent it to them Then they said they weren't getting the authorization from my insurance. I called and the authorization was good till July. Then they apologized and said it was a new system they had that entered the authorization wrong and they would ship it overnight for today. Due to bad weather it didn't arrive today and if the weather is bad tomorrow I may miss two days. Has anybody missed two days more than they should? Could it affect progression? I've been on Ibrance Letrozole for almost two years and never missed a dose.
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elenas, don't fret. Almost everyone misses now and then. If you haven't missed in two years you need to buy yourself a present! You're a star!
I was off for 7 weeks last winter (pneumonia and the black plague!) and stayed the same.
Love from PatGMc
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Thank you Pat! Always appreciate your posts.
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Thinking about you Jaylea...
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elenas, I just remembered something that might help you. Once when my Ibrance shipment was delayed I called FedEx and explained that my package was medicine and I needed it right away. It wasn't scheduled for delivery until late in the evening but they sent an employee in a private car to pick it up from the truck and deliver it to me that morning.
Give it a try!
Love.
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PatgMc- That's a good idea. Hopefully I'll get it tomorrow. .
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I wish you lived close to me, elenas, and I'd bring you some. Where are you? Maybe someone on here can bring you a few capsules so you won't be worried.
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It's been a little while since I've checked in on this thread. Like others who pop in periodically, trying best to navigate things while infusing as much joy and pleasure into my days as possible. Plotting trips, renovations, time with loved ones. Getting ready for warmer weather!
Nettager: love your update! Enjoy all you can with your kids.
Jaylea: I'm sorry you're facing this. I haven't read what lead up to this esophageal discovery as I am months behind on posts but really hope that Pat is right that perhaps there is a bit of hope that it is benign. If not, hoping the new treatment plan will knock it back enough to go on hormonal again quickly. How is your pain level? And your voice?Cure-ious: thanks for listing of all of the abstract links! As well as your thorough explanations on why AIs fail etc. What would we do without you!?
I'm on cycle 15 (17 months) and still trucking along 75mg at 3 weeks on 2.5 weeks off due to constantly low ANC usually still 0.6-0.9 by end of week 2 (hence the need for that extra half week off). I have habitually started my treatment late since the get-go. I have asked to do 5 days on and 2 days off but MO said I would be receiving less of the drug that way?? Not sure if that’s accurate?
Latest Scans for me: I switched to Faslodex from Letrozole in November after it was clear Letrozole wasn't really doing much for me anymore. My first scan after a few injections showed mixed results but promising direction of largest nodules shrinking a few mm (2.8cm to 2.6cm). But then by my second scan which was last week it looks like the decrease I had is now back up. So I have four nodules that grew 1-2mm and three that shrunk 2-3mm. I'm trying to look at the good as there were no new lung lesions, but am concerned over a new lymph node behind my heart that is 1.8cm. It was 1.4cm in December but my MO never mentioned it to me. I also learned recently that about 2% of my last biopsy's cells had the ESR1 mutation in them. So likely is why I'm getting these mixed results. Staying the course regardless. MO hopes I can maintain at least six more months this route before trying to get Olaparib.
Having a time on Fulvestrant though. I posted in the Fulvestrant group about this also... but seeing if other Ibrance/Fulvestrant gals here may have experienced this... It seems my sciatic nerve was hit last injection and I now have what feels like neuropathy along my right glute and hip. It is very painful. I have lost feeling in a few inches of my butt (not near the injection site though). I am wondering if it will go away or if once the nerve has been poked it is damaged this way for good. I've tried asking a few nurses and not getting an answer. So maybe someone here has heard of this happening.
Up until this pain in my butt incident Ibrance and whichever hormone blocker I've been on has been very tolerable. Fatigue has plagued me pretty badly more recently but learning that that can happen after a period of extreme busy-ness. Wishing all the newbies all the best and may you all continue to get good reports on these drug combos.
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Jaylea, thinking of you and hoping that this new regimen will knock this out and get you back on your feet and on hormonals again quickly! xoxox
JerseyGirl, you're so fortunate to be in the hands of a cutting edge person, no matter how hard it is to get in front of her. You have access to her research and brain! Wow!
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Good morning all
Jaylea I’ve been following you and want you to know I’m team Jaylea for best results and care.
Elena’s I’m in FL and have extra 125 and 100. West coast.
Once when my shipment was late my Onc gave me ibrance. The pharma companies give them samples
Tanya
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Thanks for the support guys over my Ibrance issue. Everyone is so kind here. It should arrive today. I'm in emergency room with my Dad this morning. Lots of issues, metastatic prostate cancer, recent stroke and something showing up in his colon on a scan this week they need to investigate. He woke up with a fever after a biopsy yesterday. I'm just more concerned about him this morning and my Ibrance should arrive today, if no more weather delays. Just one of those days. Hope no one on here is badly affected by the extreme weather going on around the country
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Morning all.
Team Jaylea. Yeah, that sounds right. We are rooting for ya, lady. Fight that progression and knock it down!!! Praying for you.
Elenas- Praying for you and your dad today. Crazy we have to prod the doc offices and pharmacies for our meds. In Jan I had problems with my Ibrance refill. The pharmacy said it was waiting for prior authorization with the insurance company. The doc office didn't submit the forms due on Dec 18 until after the New Year. We were 4 days late in Jan. Then in Feb when I called to have the med shipped, they told me in holding with insurance company again due to the price went up in the new year and the insurance had to review at the new price. I called the insurance company myself, talked with that specific department, and then called pharmacy back with the number and persons name to talk to at the insurance company. I told pharmacy all they needed to do was call that number and could be approved over the phone right away. Good grief !!! The patient shouldn't have to do all the work, right.
Ashlyn--Good to hear from you. Keep us updated.
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Candy-678 and all: Wow, you had to go through a lot to get your med. I shouldn't complain, mine did come today, so I just missed one dose. Thank you all for the concern. Caring for my Dad helps me not to focus only on my problems. Thats what we do for our loved ones.
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NettaGER.... So nice to hear from you.... glad you are doing well and enjoying your kiddos.
Add me to Team Jaylea! Praying this new combo knocks back this thing straight away so you can get back on hormonals. Keep us posted on how you are doing with this combo... I hope it's easy on you.
Love to all,
Lauren
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I feel really lucky that I have the specialty pharmacy I have! It's Accredo, through Horizon Blue Cross. They call me about two weeks before my refill is due, to ask if I'm on the same dose, if there are any changes in directions, etc. Then they put in the refill request. If there's an issue with co-pays (every January) or authorization (hasn't happened yet, as my oncologist is really on top of that), they have time to deal with it before my next refill is due. It's always shipped overnight, and I get a text telling me when it goes out, so I know when to expect it. I always get it at the beginning of my 7 "off" days, so haven't had to worry about it being here on time...
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Jaylea; My experience with Taxol (aka Paclitaxel) has been very positive. I was in remission for quite a while. Be sure to start laxatives prior to starting it or as you do. I found it very constipating.
NettaGER; So glad all is going well with you. Enjoy!
Thinking of you all and sending prayers.
Cathy
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PatgMc, I need to clarify my malignancy comment. It is cancer, but when I asked MO what kind (i.e. breast vs. esophageal), she said that will take a few more days to know, but 95% certain it's breast. GI that did the biopsy said the same thing - if it was esophageal he'd see it in the tissue itself, rather, it was a separate tumor. Also just clarified that paclitaxel is taxol. I'm comfortable, almost in a don't worry-be happy way, on a low dose fentanyl patch and have liquid morphine just in case there's any breakthrough pain.
Chemokaze, Ashyn, Joyner, Tanya, Candy, Lauren, you guys know we have a mutual admiration society going on, right?
Cathy, thank for the constipation reminder. It's been years since I was on taxol and forgot about that.
Elenas, praying you and your dad are out of ER now and resting comfortably at home.
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Jaylea
I just want to chime in on my experience of taxel. Very positive for me also. Yesterday, was my 4th of 9 treatments. (3on 1 off) Ful/ibrance had started working for me but quickly stopped. My breast tumor started to appear on the skin of my breast and my ONC was very concerned about it ulceraing so I had no choice. I was terrified. The word "chemo" totally messed with my stress. But once I started treatments, nothing to it. What a big baby I am. If you had taxol years ago, I bet you'll be surprised about the changes that have been made. I've had no nausea, no constipation. Just the fatigue. The only hard part, if you want to call it that, is the steroid drain day which for me, is day 2 and 3 and what's so hard about sleeping all day. So, far, without a scan my ONC highly thinks I'm responding. I had 4 spots on my spine which had caused me to use a cane and in pain. That's all gone now. Also there were two separate tumors in my breast one of which is noticeably smaller. The second one which is the one growing out of my breast is not a hard tumor so it's harder to access what's going on with it. But, really I just wanted to say that if you had chemo before, you'll sail through this. Ha even still have my hair, thinner, but it's there. I'm praying for you and sending hugh "cyber hugs" your way. God has this (just ask Pat!!) Sue
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Jaylea, is there a way to remove the tumor? When I had the one on my chest wall the oncologist didn't recommend surgery. Years later I spoke with a new surgeon friend who said he would absolutely have gone in and removed it. The good news was that good ole Taxol/Carboplatin wiped it out....two-thirds of it gone after 3 treatments and 100% after 6. (I think I remember that right!)
I'm glad you're in Don't Worry mode. My clock is talking to you and good-news-snooky tonight:
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haha Pat.....love that clock... Like the old song...."Dont' worry, be Happy" Have a good evening.
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Snooky - I’m so pleased to hear how well you are doing with your chemo and how well it appears to be working! Yay! (And nonsense, you are not a baby!)
Jaylea - Surgery is worth inquiring about.... Pat raises a good point and I’ve read similar accounts that surgery for distinct mets in operable locations is a worthy consideration.
so does this all explain everything you’ve been going through, including your issues with your voice? I remember your onc felt that was permanent but I’m curious if they now think differently once this tumor is wiped out? I do still lose mine once a month during my week off. It’s like clockwork. Thankfully, it always returns.... Since my work life consists of conference calls all day long, my voice is fairly critical to my job, which is fairly critical to my health insurance..... and so on....
Love to all,
Lauren
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Good morning, ladies. I may be joining your ranks here shortly. Scans yesterday look like I may have a small progression of bone mets in the spine. It is the first progression since 2011 when I had chemo and rads and have been on Arimidex all this time. The onc plans to put me on the Aromisin and Ibrance combo. Her nurse is working out the ordering and insurance.
Yes, I'm scared. But more than the emotional part of this reality check, which I will get to in later posts, my immediate concern is the price of the new meds. I saw astronimical costs associated with ibrance. I am not sure how much my insurance will pick up. It scares me.
Please advise.
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