Ibrance (Palbociclib)
Comments
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Piggy, I am keeping my fingers crossed for you. I hope your scan reports include the words stable or improved. We will all be there holding your hand. Sometimes it takes a bit longer to see initial response to treatment, so stability would be excellent.
Hugs and prayers.
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good luck Piggy! thinking of you!
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IntoLight, do you have any GI issues with D Mannose? What brand and dose do you take? I have some from a company called "Now." 500 mg on the front of the bottle. 1500 mg listed in the supplement facts on the back. My problem is I started four different supplements at the same time, a sign of desperation. The D Mannose was one of them. I usually am smarter and start one new thing at a time. Vit B6 and B12 for neuropathy seem to be ok. Not working but no SEs. RepHresh vaginal probiotic caused constipation as all probiotics do for me. D Mannose was messing with my stomach. I really need a preventative for these UTI's. I'm going to go off I/L for the next month. Last time when I did that in Dec, the relief lasted for four months. I want another four months.
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Jaycee, I have had stomach troubles from the start--didn't even think D Mannose was increasing those but maybe... How about drinking cranberry juice? I had no problems when that is all I took but would rather take a pill. I will experiment with going off D M and see if anything changes. I am taking mine from a company called ZHOU, 1000 mg DM with 400 mg cranberry extract. Maybe it is too strong, but it is working for me. I don't have constipation problems--quite the opposite whether on or off supplements! I am getting over a cold so things are a bit messed up for me right now.
Piggy, will be praying for your scans tomorrow. Yes, it sometimes takes longer for good results but hoping your scans will show no growth at least. That would be a good sign.
SandiBeach, you might consider wearing support hose during your car rides. I hate it but it really helps me on my 3 day trips from CA to CO every year.
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Sandi beach- when I’ve been at sea level for awhile I get a script for acetazolimide befor going to Colorado. I take it for two days befor leaving and two days once I get there. It has prevented many altitude related migraines!
Learned something from my neuro Onc this morning that may help others. Bouts of dizziness and balance issues come with Ibrance. Some is due to neuropathy in the feet. I was just glad to know it wasn’t brain related.
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Piggy99 - Wishing you 'plenty of cake"
and ice cream too if you want it! Prayers and positive energy being sent your way...0 -
My bottle of Ibrance came today. When I took it out of the box it was in a ziplock bag with "CAUTION CHEMOTHERAPY DRUG, OBSERVE SAFETY PRECAUTIONS FOR HANDLING AND ADMINISTRATION" printed on it. I have done lots of research about this drug and I'm thankful my insurance is covering it, and I was OK with taking it but I've suddenly got the heebie jeebies. Ugh! Any words of encouragement?
I really feel like I want to run out the front door away from this medicine and never stop running. This is so scary!
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Sparrow, they are being cautious for mail handlers, etc. who might accidentally come in contact with it, but it is not that caustic as long as the pill casing is not damaged. I have handled mine fine for 2 years now with no problems. Take a breath, and be thankful for the research. I would much rather take this pill than go through the alternative. Everyone is different, so read through some past posts. You will find others are grateful also, and doing well with minimal side effects. I am thankful for it.
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Sparrow, I have the same ziploc bag; I'll be starting ibrance and faslodex on Thursday. It's scary, isn't it? Two things I'm focusing on: first, it's not IV chemo that the nurse has to "suit up" and wear double gloves to administer, like I had for my original cancer diagnosis. Second, my stepmom is doing ibrance and faslodex and not reporting many side effects - and she'll be 81 this summer. If SHE can do it, I can do it. Hugs - we can do this!!
Kathy
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Sparrow, when I got my first shipment of Ibrance in March of 2016, it said none of those things on any labeling. This drug is NOTHING like the chemo you had before. (Did you have chemo before?) I was just thinking about this issue yesterday, about how many of us had "regular" chemo before and think this might be like that. It is NOT. That label has been added because of legal issues that have nothing to do with your experience with the drug. No heebie jeebies or running out the door. Just come here. We're with you. We've all been there. We will try to answer your questions and calm your fears. Tons of experience with this drug here.
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I'm just ending my second week Ibrance and am so grateful that it is not the chemo's I've taken in the past. I don't have to go to the hospital and take to a bed or chair for hours while this horrible poison is being dripped into my body. The side effects are in no way comparable to chemo.....thank god. I was thrilled when my bottle was available (without all the warning packaging you guys get...it is just a bottle with pills) to know that I had something to start dealing with these mets. I'm just trying to patiently wait for my first scans after 3 cycles to know if it's working or not. That's the hardest part for me. On a very happy note, my bone scan was negative....no bone mets. Have a wonderful day everyone.
Cathy
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Thank you IntoLight, peculiargirl, jaycee49, and Seaway for your insights. I think I'm just having a panic attack. I've had them before with my first diagnosis. I know how to deal with them now, I think.
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Cathy - yay!!!! So pleased about bone scan!!! Woo hoo
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Yay, Cathy!!!
Sparrow, you can do this! We all had to deal with that frightful packaging and that sinking, scary feeling. But now with 16 (very uneventful and very tolerable) cycles under my belt, I am beyond grateful that this research was done and that this drug is available to us. Before long, you'll be looking at it with new eyes...as the savior it can be for you and your family. Drink with lots of water and wash it fully down. Go for it, girl.....!!
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I had my staging today: CT showed increasing sclerotic rims of my various bone mets, while no other organs are involved. The tiny spot in my liver right in a branch of two veins has not changed since Nov (the earlier CT scans were too low in resolution to view it), therefore my MO thinks that it is rather a part of the veins and not a met. The breast ultrasound (since I had no surgery) showed basically nothing, there is one very small spot that might be the rest of the primary tumour, but the MO said that it is rather questionable, if the spot is really tumour tissue. And only one enlarged node can be seen, but it is questionable if it is cancerous or just my immune system working. I seem to be a very good responder to Ibrance, it appears that Ibrance enables my immune system to recognize my tumour again and eventually attack it rather successful. Next staging will be end of Aug, then also with a mammography to have a better look at the remains of the primary tumour. Great relieve for now, hurray!
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GREAT news, NettaGer!! So many positive reports lately! Sparrow....listen up!
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NettaGer, Yay! Doing a happy dance for you. That is good news and consistent with what others are experiencing. Scleric rims often flair on Ibrance before they die. You are doing great.
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Hi NettaGer, first of all congratulations on your results,sound great! I have a question for you. reading your post I see that you had a mass/tumour in your breast on top of the mets. I wonder if they would usually recommend to operate the tumour or let Ibrance do it's job? I just received a call back from a mamogram that they need to do an ultrasound and maybe a biopsy on my breast. The last thing that I'll want it's to have surgery right now. I'm already on Femara Ibrance since April but still don;t know if it works
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NettaGer, picture this: all of us running around you with Ibrance flags waving in the wind, yelling, "Wahoo!!" Congratulations on this terrific news!
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Netta, doing a happy dance for you and your amazing response to Ibrance. Melting away the primary tumor to nothing-color me impressed!
Hoping one day we will find out that this treatment is for Er+ like Herceptin was for the Her+, with a beautiful, fluffy long tail of ladies that live for decades and that you will be one of them.
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Cathy, WOOHOO for the bone scan results.
Jetta, A WOOHOO for your scan results.
I am doing my happy dance in double time tonight to celebrate for both of you. As I have said many times, I love to hear good news.
Sparrow, I don't know if you have read through the past posts here, but I have told several people about my initial reaction to the thought of taking Ibrance. I had heard about all the possible SEs and told my DH that I would NOT take that drug because I would just be sick all the time. He and my MO convinced me to "just try for one cycle". Well, here I am 22 months later, still taking Ibrance and feeling healthy as a horse. SEs have been virtually non-existent for me. I have been to Hawaii (twice), Disney World, Naples, Fl, Myrtle Beach, SC, Louisville, KY, as well as to my grandchildren's sports tournaments in Massachusetts, Rhode Island, Maine, Pennsylvania, and New York while continuing on this treatment. I even went skiing this winter. I realize that everyone is different, and each person is experience is unique, but your fears are worse that what you will find the reality to be. Start your Ibrance and relax. If you have questions or concerns, we will all be here for you.
Villa, As I just told Sparrow, each person's experience is unique, and so is the response. I did not have surgery to remove my primary tumor in my breast. It has gradually gotten smaller while on Ibrance and Faslodex, and now scans no longer detect a tumor there, only scar tissue. No tumor or lump can be felt. Not everyone has that type of response, and mine is probably atypical, but I wanted you to be aware of it. Surgery to remove a breast tumor for stage IV patients is controversial. Most MO's and breast surgeons recommend against surgery, but there are exceptions. The way I look at it, I strive for stable scans, and if there is ever improvement it is a bonus. There could be some valid reasons for the ultrasound and biopsy that have been recommended to you. You should ask why they want yo do the tests so you fully understand.
Hugs and prayers from, Lynne
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Lynne, thank you for your response. It's a bit weird, I saw my MO on May 4th and she said that they noticed the small spot/mass can't remember what she called it, it seems that they saw it last year on my previous mammogram and just followed up (never heard about it until this last appointment) I asked about it and my MO said not to worry and that we have more important things to worry about (re:liver). Never heard about it until this last appointment) I asked about it and my MO said not to worry and that we have more important things to worry about (re:liver). Then today I get the call from the Cancer Agency saying that I have to come for an ultrasound?!?! It is scheduled for this Friday so I hope that I can get a hold of my MO before that
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Saw surgeon yesterday.he asked me how I was ? I quipped it only hurts when I walk.lol.The fat pad they leave for movement that has stitches in it rubs and hurts and burns when I move my arm ..he laughed..We have a good rapport.See him in a month..our last appt with him..Saw oncologist tiday ..she pleased with sentinel nodes being negative and size of tumor so small on my triple negative breast that was removed two weeks ago.WBC and RBC were down a little but not enough for concern.
Now to continue Ibrance dance for lung METS..I was told to take it with food and Joyner L writes not long ago about the water..Well perhaps tonite I blew it not enough water..Nausea and vomiting..no details but oh was I sick..just once thank God I had baggy near me from nite I got home from hospital..finished it off in bathroom..oh details crap.Well you all know I am a writer..ha! Still feel little nauseous but hungry too..One bottle of water from now on with Ibrance..Bless all of you.
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Boy they say stress is bad for your heath and here we are all dealing with the worse kinds of stresses imaginable..... and over extended periods of time. Thank you so your kind thoughts to my great bone scan results and congratulations NettaGer about yours. I think all this travel and life events we're able to enjoy given this treatment is so wonderful. It offers a reprieve from the daily thinking of this gd disease.
When I was first diagnosed with bc I remember reading that biophosphonates were thought to help protect your bones from mets. I'm wondering if this is still the thought and if just taking an actonel would work or would one need a stronger dose.
I am so happy to have found such a wonderful group and thank you so much for being here.
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Oh, lakewoman, I'm so sorry. Ibrance can be such a fickle girl! My nausea has been better for the months I've been on the 75mg but this past week...my week OFF!...I threw up every day and got the rash again! The weird thing is that I can throw up, then be ready to eat my meal (again) in a half hour. And that lovely drug, Arimidex makes sure I gain weight while eating less than I ever have and throwing up more. But here I am, alive and kicking...well, maybe not kicking but alive anyway.
For those of you who are new to our regimen, I started Arimidex (similar to Femara) and XGeva in September, 2016, then added Ibrance on October 2. I've had a remarkable response and will be scanned again June 2, my first time since reducing the dose to 75mg. All my widespread bone mets have healed and one tiny bit of uptake shows in the soft tissue of my chest. (The radiologist reading the scan says he doesn't even know if that is MBC now but he mentions it because of the 2.3 uptake.) We can't wait to hear the great results all of you get in the future. Much celebrating ahead for all of us pioneers!
Love from PatG
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Seaway, congratulations to you too! Waving the Ibrance flag for you here in Memphis!
Yes, on your question...There are trials studying whether bisphosphanates can actually prevent bone mets and the evidence seems to be that they do.
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With some new friends just joining our club of pioneers, it might be a good time to shout out some encouraging details to lift them up.
Here's my quick story: 24 and a half years since Stage 2 BC diagnosis. 6 years since diagnosed with MBC. Widespread mets in September, 2016, started Ibrance and almost no evidence of disease since June, 2017!
What's your story?
Here's to lots more happy ones as we blaze a trail for MBC survivors!
Love from PatG
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OkPat, I will join your quick stories.
I was dxd de novo stage IV mbc with extensive bone and liver mets May 20, 2016. Received a result of NEAD in August 2017 and have been clear ever since--close to a year.
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NettaGER - so happy for your great results!!! I am celebrating for you!!! Ibrance is our friend!
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Hi. To support the newbies:
Twelve years since DCIS. Oct 2016 Widespread liver mets, tumor cells in lung arterioles, and a T12 met (I still think it wasn't). Ibrance/Letrozole Jan 2017. NEAD Oct 2017. Feel great..well, fatigue is my buddy!
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