Ibrance (Palbociclib)
Comments
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Joyner...High Five!! I hope and pray that the rest of your news is good news. And I pray the same for all of you who get scan results this week.
I'm thankful for every foundation, for Pfizer and for clinic employees/nurses who put in the hard work to find sources for us to get Ibrance without going broke. And none of us have forgotten how difficult IV chemo can be. Unpleasant as some of our side effects can be, they're better than that!
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Pat, totally agree!!! I hope Canada and Europe get things ok’d quickly for the sake of all the women who need it
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Thanks for prayers and comments remembering my appt with surgeon Monday..I'm not concerned ..I know I'll be scheduled for mastectomy..Sooner the better..picking up new boat this week!!..I can drive right handed now even with fused wrist..Yeh broke both wrists shattered right one..from fall down 12 stairs.in 2012~~~9 surgeries and lotta PT..and a few years later I got back to my old myself Even.bought a brand new jetski to replace my old one...PT son still concerned about the mastectomy cause he knows after right fusion I became more dominent left..but I told him I be fine..but casting my rod might take some practice..ha !
Oh Ciaci was the ice water cause u quit a.m coffee cause of heartburn..Dah me!
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Wonderful news, Joyner, so happy you have someone in your corner who can put your mind at ease!!
This makes 2+ years for you on treatment?!
I think we have some people on this thread who are over three years on Ibrance now? I think it was approved in early 2015, and some have been on continuously...
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Thank you ALL for being there and sharing. I have been reading this thread even though not writing. I was dx as Stage 4 MBC in late January 2018. I started Ibrance 125mg and Faslodex in late January and am feeling fine overall. (Just finished 3rd cycle) I do tend to sleep about 2 hours longer than normal which is frustrating but the only way I am not exhausted. Otherwise I am feeling fortunate. You give me so much hope (which my home state doctors did not. They said 3-5 years.) I have just changed to a university hospital in a bigger city but with the same rx. My first followup PET scan will be in May. I was concerned though what would happen when Ibrance stopped working but there is so much hope here on this thread. One interesting note that I saw on one of the boards. During my 1st cycle my thumb and fingers were getting numb and tingling and I was concerned with neuropathy. I started taking Vitamin B6 and L-Glutamine (per this site) which my dietician had recommended when I did ACT chemo 4 years ago to prevent neuropathy but I had forgotten about it!) It worked and the numbness/tingling went away. Thanks!
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Dx August 2013 Right breast Stage IIIB 5.5cm Grade 4 ER+/PR+/HER2- [Had dense breasts and thus tumor did not show on mammograms even AFTER it was detected but perfectly clear on ultrasound so referred to surgeon and oncologist.] Ate healthy, exercise regularly, no family history, never smoked.
ACT chemo 20 weeks Fall 2013 [Interesting to note that newer research 7/2017 is showing that chemo prior to surgery can increase recurrence.]
Lumpectomy (large) January 2014 with multiple lymph nodes removed (all positive)
Radiation (7 weeks) Spring 2014
Aridmidex daily; Zometa every 6 months for 3 years
Dx December 2017 Right breast and now also upper chest
PET scan (1/2018) showed spread through lymph nodes and surrounding right lung
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Cure-ious, I just finished my 15th cycle of Ibrance/Faslodex.
Interestingly, I was not put on Ibrance/Letrozole first (and I didn't know enough to question that choice), and I do wonder if I missed my first line of treatment and thus a step in the process. As I recall, my first onc (I moved on when I sensed that she was too busy and was not focusing on my treatment) offered me either Ibrance/Letrozole or Ibrance/Faslodex. I told her that I would do whichever she recommended, and she suggested that I do Ibrance/Faslodex. She was a luminary at the university, so I did what she suggested. I understood her to say that the Faslodex route was more difficult because some people couldn't "do the big shots", but I told her I could do whatever she thought gave me the best chance of a long response. She suggested Ibrance/Faslodex.
Welcome, Kellyga! We're sorry that you have to be among us but glad to welcome you. There are some wonderfully knowledgeable and supportive voices here. Also PatgMc has some great stories of survival. You should PM her! Or maybe she'll just chime in....her knowledge of friends with long-term survival is very uplifting.
I take a nap every afternoon, and that seems to help. My only SE so far is general tiredness. Thank the Lord.
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Hello. Just started 18th cycle Ibrance/Letrozole. Still NEAD. Would like to hear more long term Ibrance stories.
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Cure-ions, I'm getting ready to start cycle 36 on Monday.0
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Joyner.. yeah for the great news.. hip hip.. love the stealth... I bumped back down to 100 mg from 125 and am feeling much much better than I did on the 125.....
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Sandibeach, I'm starting cycle 25 next week. I'll also be starting my fourth foundation grant for co-pays, one from PAF and three from PAN. That seems like a milestone, too.
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Hi Ladies,
New to this site. I'm almost finished with my first cycle of Ibrance. I started Falsodex in early February. I'm noticing that the areas where I have bone mets are very sore. I'm hoping it's because the ibrance is working and not because it isn't? I haven't had a chance to read this complete thread but I'm wondering if others have experienced pains where the mets are? I hope it means that the treatment is working.
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Lynh, when I first started I was sure it wasn’t working because of the pain. Turns out it was working and some of that was tumor flare
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Thank You Gracie. I hadn't heard of tumor flare. I didn't have any pain until the last couple days. I was afraid that it meant the tumors were not responding. I wonder why my Dr didn't warn me.
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Lynh, I've heard from so many here and on the Ibrance Facebook page that they have pain that increases in the early cycles. My doctor is eager to hear the various things I experience as this is all new for him too. Your doctor may not have treated a lot of people with Ibrance so he may not be aware that pain flares are common.
I remember when I first came here how eager I was to know that people thrived and survived a long time on our drug. It was so encouraging to meet you folks that I cried like a baby. I was excited to know that people who were on the early trials were still doing well, some with NED and some with no progression. I'm happy to have seen posts from Ibrance Dancers who were 5 years out! I plan to be one and I hope all of you do too. (I first had mets in March of 2012 so I guess I'm actually past that, huh?) Diagnosed with widespread bone mets, I started 100mg in September/October of 2016 and had a remarkable response after 3 months. At 9 months, I had what some would probably call NED with one place showing the tiniest bit of uptake on the PET/CT. The radiologist who reads the scan writes the report in a way that leaves an opening for no cancer still being there so I choose to believe that. I'm not eager to biopsy it to find out!! I had a 2-month break in December/January (flu/pneumonia) and started 75mg after that. My side effects are much lower and I'm so very thankful. I plan to scan again in early summer (unless I change my mind). My oncologist and I have discussed trying Verzenio in the future or perhaps one of the new immunotherpies. He texted my last biopsy against Keytruda and I didn't qualify but they seem to have had some issues with their testing so that may be done again should I need it.
The important thing for all of us to remember is that there are long term survivors of MBC who never had the new drugs. I have friends that I've spoken of here who are decades out from diagnosis. Some have been in and out of treatment over the years and some have had more than a decade of no further treatment. They have raised children (one adopted a baby> now 16 years old <after diagnosis), they have rocked grandchildren and they THRIVE! We can too!
I love every one of you and pray for you every day. God knew how many days each of us had before we got here and we're not leaving a minute too soon! Someone once told me that every life is a complete life, whether it's months or years or decades. Let's all live every day of ours and not let a negative doctor or "friend", Internet article or approaching scan rob us of our joy. Here's to the Ibrance Dancers on this lovely Sunday!!
PatG (24+ years since I first thought I had months to live...that's a lot of months!)
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Pat, thanks so much for that encouragement! I start round five on Ibrance this week. My tm’s are worse though, which continually freaks me out. But I can’t control that so am hoping for the best! You are amazing to be so far from original diagnosis!!!
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Lynh. I told onc that had pain in an area .she immediately replied med working.I am on my first cycle too...
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Pat, thank you for writing such words of encouragement. This is a scary place to be. I'm thankful to everyone who is willing to share. My MO told me that she thinks I will get a good response from the ibrance. She said new drugs are coming out all the time. I've also read about some of the new immunotherapies that sound very encouraging. I will try to put the worry out of my mind. Thanks again.
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Thank You lakewoman! It was bad this morning. I was so afraid it meant it was expanding. Nice to know it' working.
I see my dr next week. I'm looking forward to hearing what she has to say. 0 -
Lynh I am on 100mg ibrance. I started at 125
I’m finishing up my 10 th cycle. Some months I felt pain in my right rib and hip. I was told on the thread that it was the ibrance working. The met in my hip was 20 reduced to 5 and now 3.3. I scanned last in February. I hope this is helpful. Quite earlier on the thread many ladies reported right rib pain.
Take a deep breath say a prayer.
It’s time to focus on healing.
Tanya
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Tanya,
I'd much rather think it's working. I wish my dr had given me a heads up about the pain, but so glad you ladies are here for advice. I was pretty sure it wasn't working because the pain was in the area where the mets were. I can deal with it if I know it's because it's working. And yes, I do say a prayer for healing. Lyn.
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Joyner, I think your MO was very considerate; although its more common to move from Femara to Faslodex, but you can still go to Femara if Faslodex stops working, so its all good!!!
Lynnwood and Sandibeach- CONGRATULATIONS!!!! Please just keep the updates coming...
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Thank you, Cure-ious...I have been worried about perhaps having missed a line of treatment.
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I am glad to see that some of you with singlereseptorpositive disease do have effect of Ibrance. I am on 100mg. Got too low wbc on 125. But,,,do any of you feel pain in your nose? Have never heard about it, but I have really strong pain in a right side of my nose... Hope it is a side effect and no mets to the nose,,,
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Thought I would chime in with an update. I last posted that I had an MO appointment to discuss CT results. I ask him about the elevated TM's along with the new lung nodule ( not noted on other CT scans ). He basically said the same as you guys----wait and watch. He said he understood my concern and we are going to check TM's every month and do another CT in 3 months. So we wait and pray that the nodule is nothing and the Ibrance continues to work.
Next question----do any of you have problems with your fingernails??? I have not polished my nails in YEARS as I had a job that it wasn't a good idea. Now I don't have that job anymore ( thanks to the cancer ) --long story. So I thought I would polish my nails again to feel more feminine. I bought a few different colors and enjoyed my pretty nails. Now they are breaking easily and peeling. Could this be the Ibrance , Letrozole, or Lupron? The lowered estrogen levels? Or the chemicals in the polish and polish remover--since I am not used to using them?
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Good Morning Everyone-
thank you all SO MUCH for the encouragement and great information! My ONC is a great guy, really. It's just SO HARD to get him to stay on task - he wants to talk about religion, politics, farming, my job.........that's all well and good, but I'm having a hard enough time focusing these days - I KNOW faith and love is going to get me through this, but I have other people who can talk to me about that. He's my doctor, and I want to know more about my upcoming biopsy, kyphoplasty, and Ibrance and Faslodex and from him. It doesn't help that my husband is perfectly willing to talk "good ol' boy" with him, while I'm sitting there trying to bring the conversation back to ME before the ONC has to run off to see another patient! OK, rant over. I just wanted to say thanks for all the information - I'm getting lots more information from all of you than I am from him.
PatgMc, I wanted to especially say thanks to you......you're a rockstar!
Have a great day, everyone - wishing you all good test results and low side effects
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Peculiargirl-
YOU are the patient and the important one here. MAKE your ONC stay on task. Tell him you have questions and you know your office visit time is limited. If he doesn't start answering your questions you may need to find another MO. ---My advise. I have been around docs like this before and it can be very frustrating. This is too important now to let this continue. This site is wonderful and we have your back. Keep the questions coming.
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Candy, I'm about to start cycle 16 of Ibrance and Faslodex. I've also had Xgeva monthly until recently, when my onc cut back to every 3 months. I don't wear polish but rather buff my nails to a soft shine. I stopped doing even that some months back, as I feared that it was causing them to lose a bit of thickness. In the past several months, they have begun to develop slight ridges or grooves going from nail bed to outer end of the nail, and they gotten far more fragile. It has to be the medication, but I have no idea which is the culprit. Someone or several on the site recommended Sally Hansen Miracle Nail Thickener, but that didn't work for me. It peeled/wore off immediately. My nail technician used another product, and I was skeptical. I only let her put on one coat, as I dislike using the polish remover later. So far, two weeks later, that one coat is holding up reasonably well. I'll find out what the product is when I see her next.
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My nails are also thin and easy to bend and peel. I keep them very short and use Sally Hansen Nail Rehab Strengthener. Helps a little. Not sure which drug is culprit..Ibrance or Letrozole. Oh well.
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Good morning ladies
Peculiar girl I had kyphoplasty biopsy last year.
I’d o t know if you need to ask questions about it that I can answer go ahead.
I go to my Onc with a list of questions on my phone. So talk about all your stuff doc these are my questions that I have for you and I need answers before I leave today please and thank you.
Tanya
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Joyner, I'd be very interested too in any nail product that helps- the buffing sounds like a good idea too!
I think your MO was just being conservative by starting you with Faslodex, because if you failed Femara in short order you would have been even more freaked out. However, if you got mets while on an AI, then of course they would start with Faslodex. But if you have no reason to think that you had already failed Femara, of course it remains for future treatments!
My concern with my MO is that she doesn't do a scan unless I have new pain or ask for one, and I want to catch progression sooner, rather than wait for liver failure! Because although we have lots of treatment and trial possibilities, we don't have an infinite amount of time to try them all..
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