Ibrance (Palbociclib)
Comments
-
Tanya...great news!!! And no, I didn't request the tablets.
Pat...once again beautiful artwork! Here's to flushing #4!
0 -
Pat love the purple shoes and I’m going to number the TP for fun today.
Into the light Chris you made it!
Tanya
0 -
Husband11: Thank you for the response about the iron supplement. It's never easy, no clear cut decision. I'll try the iron supplement every other day and see what happens with my counts. All rbc counts are low, but not low enough for a reduction of Ibrance. In 2 weeks will be starting my 9th cycle. For the last 2 months I have a new member to my team. A Pharm D will be calling me every month after my lab work. So I guess it's good to have another set off eyes on my case...
0 -
Just checking in after my MO televisit. Bloodwork came back ok, had it pulled this morning before my evening visit with her. Tumor markers don't know yet. But, we did go over Foundation One results. Basically I do not have any mutations that would make any other targeted therapies currently available an option later, no Piqray etc. And no mutation that would make Kadyla (sp?) an option, I didn't know that was for Her2- but okay. Also I have no mutations that qualify me for a trial. AND apparently I have a rare mutation they don't know much about yet, I wish I was paying attention better when she said the name of the mutation. A Physical copy is being mailed to me so I'll be able to share once I get it. I said I wouldn't go any further than Ibrance having gone through what I did previously, I guess Foundation One can give me alittle peace in that choice. Sticking with Ibrance 125mg, will scan in June, MO doesn't want me in office quite yet. Wants to revisit Zometa around that time too. I hesitated at the idea of putting scans off until June, but MO thinks it should be okay to push back 1 more month - wondered if maybe because it wouldn't make much difference in the grand scheme of things. Sigh. I think I will seek to be content with the fact I only have mouth sores and gas to contend with for another month. Truth be told been having a difficult time, the isolation this pandemic is amplifying plus hearing about Gumdoctor.. Can't go to church. Can't hug friends or family. Video facetime is just not the same. I did a tiny bit of online retail therapy and heated me up a chocolate chip cookie with some cold milk. This weekend is going to be glorious so I plan to cut some grass...and some muffins...hehe and try and cling to some cheerful specks.
So Happy for you Tanya and thinking of you Intolight as you wait for results.
Take care ladies
0 -
Tinkerbell107, please forgive me if you know this already, but I have anemia as well, since before my diagnosis. It started in October of 2019 and hasn’t changed much, but my iron levels are fine. We don’t know what’s causing my anemia, but mine is not iron anemia. There are different kinds. There are so many posts here, I’m not sure if you said you’re sure it’s iron anemia. If it is, please ignore my post.
0 -
Thank you all
Tanya
0 -
Ventured out today in the pouring rain to my oncologist's office. Had blood drawn and the Faslodex injections, then met with my doctor and told him how ragged out I feel, drained of any spark of energy. (Doubtless some of this is due to the seemingly endless wet and chilly weather, plus the quarantine.)
Today's blood test results seem to indicate to me that my blood did not recover well in the seven days off Ibrance. There are lots of red lows and highs, all lower and higher than last month's.
I was due to start Cycle Three today, but he told me to take another week off. This means I'll get blood draw and see him on on the last day I take the Ibrance. Maybe he'll use those results to determine whether I should go on a lower dose.
How long did it take you to get used to this? I had hoped to adjust better, faster.
Tina
0 -
Tina2– sorry you are feeling blah and run down.
I just finished cycle 3 and saw MO yesterday. Blood work showed my red and white blood counts lower than last cycle, plate still below range but higher than last cycle, and ANC above 1 So was cleared for cycle 4 with a dose reduction to 100 mg instead of 125
I feel the way you described so wanted to let you know you weren’t alone. And will be looking for replies to your post, too
0 -
Tanya— congrats on your scan results. That is awesome news. 👏👏
0 -
Tanya, congratulations on the good scans!
Tina, like DodgersGirl I was bumped down to 100mg of Ibrance. Mine was after cycle 4. Hang in there!
RRabbit - the social distancing is hard when we don't know our timeline, right? I am sorry it's been so hard lately. The quarantine makes me feel both brittle and sluggish which doesn't make sense. I am happy to hear that you are expecting glorious weather to cut the grass and spend some time outside!
0 -
Tina,
My dose was lowered to 100 after 15 cycles. My counts are still low, so the MO wants me to wait week few days to check my bloodwork again. Quite a few women are on the lower dose and doing fine.
0 -
May I ask, for those that reported a rise in tumor markers, signaling a possible complication, what kind of numbers are we talking about?
0 -
Hi, Coach,
I am one of those folks who has been reporting a rise. My doc does both CA27-29 and CEA. My CA27-29 had lowered to 170 and my CEA to around 20 (so neither normal) by last December, after about 4 1/2 months on Ibrance/faslodex combined (I didn't have a baseline prior to that, but I know that my CA27-29 was around 340 when I started that drug combo.) Starting in January, both started climbing again. My CA27-29 last month was in the 320ish range, and my CEA was around 29. Hope this is helpful for you.
0 -
CIaci,
Sorry for the damn autocorrect -- I know that "Coach" is not your screen name.
0 -
BevJen, thanks - and with a nickname like "Ciaci", I'm used to getting called "Coach" online, LOL.
0 -
Hi all, new here.
About 6 weeks ago I was diagnosed out of the blue with "advanced metastatic breast cancer" after a trip to the emergency room with extreme peritonitis. They haven't mentioned anything about cancer stages.
I've been on Ibrance for 5 weeks. The fluid buildup has decreased but my vision is deteriorating rapidly and I find that very frightening, I'm a devoted lifelong reader.
I'm 66 years old and I've rarely been sick before, so this is all quite overwhelming to me - suddenly I have cancer, I can't see for squat, and I don't know what the hell happened to me.
What can I look forward to with this treatment, will my illness improve? Will my eyesight improve? Am I going to be me again or is that over for good?I honestly feel like I have no idea what is going on and I've been stuck at home since this started because of the whole corona virus thing. I'm a stranger in a strange land with no road markers.
Help? What happens now?
1 -
Good evening PNW
You’re not alone!
Tanya
0 -
PNW, I am sorry you have to be here but know the group on this site will support you as best we can. We care, and understand your fear and how you feel overwhelmed. Take it one step at a time. I will add you to my prayer list.
First, everyone is different and reacts to Ibrance differently, but since you said you were diagnosed with advanced metastatic breast cancer that makes you Stage IV by definition. The vision thing may or may not be related. My eyes got a little blurry, but I had them checked and they are healthy and my blurry thing comes and goes. You might want to get into an eye doctor just to be sure.
I was diagnosed Stage IV de novo (from the start) so I understand how this can knock the wind out of you, but I am four years into it now and some days I actually feel pretty good. Next steps depends on your treatment and reaction so I can't just chat about it, but we are here for you. Ask any questions you want and usually someone chimes in. One suggestion is to read back over some of the older posts to get a sense of what some of us are going through, but remember you may be different. Feel free to PM any of us if you feel more comfortable with specific question. Take care.
0 -
PNW we all got the terrible cancer news so you’re in good shell shocked company. When the doctor said metastatic that means stage 4. It means the cancer has metastasized somewhere outside of the original place that it began.
Ibrance is a standard line of treatment and has worked well for many on this thread.
You’re probably set up for scans in the future. The doctors will probably use your after treatment scan and compare it with your initial scans to see how ibrance is working.
If you’re having pain or vision problems that have increased you should let your Onc know. If it’s bearable wait until Monday if not give the office a call they usually will have a service.
There are some wonderful brilliant women and men on here cureious patMGC Jaycee Iwrite. Many have done extensive research and are a wealth of information and comfort.
Take a deep breath and let the medicine shrink and beat back all of your tumors. don’t hesitate to check in with anything you need to know. Sorry you have to be here but welcome.
Tanya
0 -
Hi PNW,
Sorry you have to be here but hopefully Ibrance will work well for you. My eyesight changed during the first three months I was on Ibrance/Letrozole. I went to my eye doctor and got a new prescription-my eyes have been stable ever since. The interesting thing is that I needed a lower prescription-I couldn't tell because everything looked blurry and I had trouble reading. This must be very aggravating for you on top of the shock of MBC, especially given that it is difficult to get an eye doctor appointment at the moment.
Hang in there. Remember to drink lots of water-you may also find that your eyes get dry as you adjust to this medication, along with your skin, etc. Best wishes.
0 -
PNW, you are indeed not alone. You've fortunately found a very supportive community of people here to help guide you through this. You've received really excellent responses, so we hope you understand more what's going on for you, and hope that Ibrance is a very effective medication for your cancer.
We're all here for you, as you can see.
The Mods
0 -
Thanks everyone, how nice to get replies.
They haven't found any tumors, this befuddles me. I just seem to have some kind of free-floating breast cancer that has manifested in my abdomen and eyes, not my breasts. I don't understand that.
Can't do anything about the eyesight right now as everything is on lockdown until June, nothing/no one is working except emergency services. Even the hospital where I've been getting treatment is locked up tight except for two entry doors to the outside, it's a hurdle just getting into the buildings.
I feel isolated, old, and abandoned, like I'm living somebody else's life. I've lost so much weight I hardly recognize myself in the mirror. I have no idea where any of this came from.
Anybody know anything about advanced breast cancer which shows no tumors and doesn't seem to be affecting breasts at all? What is that?
0 -
Pat and Tanya
I numbered the toilet paper and waited for my daughter to go in however she made no comment about the tp, when she came out! I then asked her if noticed that numbered tp and she said yes! She said that she didn’t want to embarrass me by asking about it and that all she knows is that before thinking it through...she wiped herself with a permanent marker ! 🤭🤣🤣
She said that she didn’t know if I was counting how many sheets of tp I was using during the shortage or how many BM’s I was having! 😂🤣
Didn’t go ( no pun intended) the way I thought it would but it was hilarious!!! Thx😁
0 -
Hi PNW,
Sorry, I posted my humor story while it was fresh in my mind and didn’t notice your post. I too am so sorry to see you here with us and I’m praying that you’ll get more information from your doc soon. It must be even more difficult as you’re having to maneuver through the early stages of care during the virus. As many have said you’ve come to a great place for support and information. We’re all in this together and I hope you’ll soon realize that you have a lot of new friends also hope that you’ll be encouraged by how many years some have been on Ibrance, it truly is amazing.!
Hope you keep coming back here and sharing where your at in your journey....you’re not traveling alone !0 -
Dear PNW, you have found yourself with a new circle of friends and we welcome you to come along on this odd ride with us. Some people out there think it's a totally sad journey but they're wrong.
Give yourself a little time to adjust, knowing that you'll soon find a new normal. There are people here (and all over) who've had MBC every which way. They've done this treatment and others and their lives went on. One of my Birmingham friends has MBC in her abdomen and never had it show in her breast. She's been on Ibrance for four years and has had no progression. I first had MBC in 2012 (BC first in 1994) and my most recent adventure was CyberKnife Radiosurgery for progression in my skull. That did a good job of knocking things back and I'm on Ibrance for the second time (3 years the first time).
PNW, the best advice I ever got was to choose my "What Ifs" carefully.....What if this gets worse? What if I have terrible pain? What if I die? Those will keep you upset so I've found some that work better.....What if this medicine does a wonderful job? What if someone in a lab is about to publish results of an amazing new treatment? What if I can help conquer this fear by watching a funny movie or listening to music I once loved?
I promise to be praying for you and to hold you really close to my heart until you get some peace with this. You can count on all of us to do that.
Much love to you and all these special friends from PatGMc
0 -
Ginny, a funny story is always welcome here! I love it!
You and I are flying to the homes of our buddies talking about being Stage 4 tonight and writing on their TP!
Love from PatGMcNot-a-4 Never! Never! Never!
0 -
PNW - It will get better and you will adjust. I was diagnosed at advanced stage IV like you too although I do have a breast tumor. I felt like the floor dropped out from under me and that I had some sort of invisible mark that kept me separate from the rest of the world. I also didn't feel very good at the time with fatigue, depression, and a very painful pelvic bone problem. That was 7 months ago since diagnosis and I have just come through my 5th full month of treatment (Ibrance, like yourself, and some other drugs as I am pre-menopausal). For the first time in two years I feel like 'myself' again, about 80% of the time. It will take a few months to adjust to the drug side effects, so try not to get frustrated.
The ladies here are a wealth of knowledge and support. They helped me to see that you can still live a good quality of life with this disease. And PatM is right about managing the WhatIfs - not only which ones you think about, but the timeframe. Ive found it best to take each day in turn and when I start thinking about vague future plans that is when the bad WhatIfs start to creep in and I start to feel down. It doesnt help with the corona adding an extra layer of anxiety and inability to get anything done, and the added feeling of being hard done by!
Interesting what Chicagoan was saying about vision as I have experienced something similar, but I know I probably need a new prescription anyway. I was just about to book an eye exam when everything shut down
0 -
PNW, I believe there are a couple of women on here with no primary ever found (Penny from New York is one).
I was also diagnosed Stage 4 de novo, and I know the "where'd the floor go?" feeling very well. Spent a couple of weeks sobbing daily, could barely look at my husband or kids without falling apart. Then I started on the Ibrance/letrozole, and suddenly I had hope. It's an amazing drug; I'm almost three years into it, and feeling great. Doing what I want (well, until the lockdowns, LOL), and living with joy.The first few appointments were all a blur to me; once your heart stops trying to beat out of your chest, it will be easier to start collecting information. The more you know, the better off you'll be. Since they started you on Ibrance, you're probably hormone-receptor positive, HER2 negative. I don't know how that will affect your vision, but I'm praying for you.
0 -
PNW- Welcome here. Any questions you have, just ask. As far as your vision, as soon as you can get into your eye doctor you need to make an appointment. I too am an avid reader. Eyesight is serious. I don't know why the meds would cause eye sight issues. The only thing I can think of is dry eye, which can cause blurriness. Are you on any other new meds for the cancer? Have you had any scans? CT, MRI, or PET? I assume you had a biopsy to confirm the cancer? Are you going to a cancer center? Sorry for the questions, just trying to get a handle on your situation. I had a large - 3cm- breast tumor then we found the metastasis to the liver and bone. Keep reading and posting here, you will learn a lot.
0 -
Tanya, thank you for including me in the thread's rock stars, curious (the scientist), Pat (the cheerleader and all around up-lifter of everything), me (the accountant), and Iwrite (the deep thinker). PNM, I have read your responses from everyone and you got a very good cross section of our best people. There are more, if you can believe it. What you need to do right is slow down, breath deeply and relax. Yup, easier said that done. Can you get a phone or video visit with your MO? You need to have your questions answered. And don't let them give you the bums' rush. I have a new strategy with doctors when that happens. I say, "wait, I need to think about that." I had a phone visit with my palliative care team last week and was not that happy with it but will try again. This is a long process. As you can see, I have been on I/L for four years. (Tanya may have mentioned me because of my longevity alone.) Everyone here has special things to offer and we are all lucky to have them. All of us can say, "hang in there" and "you are not alone" to support you and each other. Even if you hear these 1000 times, it's nice to hear them again.
Don't forget that cancer is not to blame for everything. I had cataract surgery last year. That can happen any time. And don't blame Ibrance for all side effects. I am on several other medications and just figured out that something as benign as Prilosec was causing a few problems. Amazon has a lot of books that have free audio versions. I read non-stop. I use Kindle Unlimited but notice that many books have free audio versions. The author of the book I am reading right now said, "imagine that life is a TV and you are holding the remote." Good one, Adam Fletcher.
0
