Ibrance (Palbociclib)
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PatgMC, tell me about the port...did it hurt to get it? Does it hurt ever having it or them trying to access it? Can you swim/bathe/shower? I really am clueless! I keep thinking I will just wait until later...currently I have 5-6 more rounds of the Zometa infusion until they change me over to every 3 months for that. I was thinking now that MO feels good about my 100 mg Ibrance dose and don't need blood draws every week that I can give my veins a break. As it stands now, once I hit a year on Zometa, I should only need to get the occasional blood draw or IV for scans and then every 3 months the infusion. For sure when the Ibrance stops working, I will move on to chemo of some sort and probably need to have a port. I guess all this is subject to change at any time because that's how cancer is...a damn sneaky bastard!!
Regarding Ibrance and the length of time it's effective: My MO just told me at my last appointment that they are now saying 3 years and longer. I had originally heard 18-24 months. He said he is hopeful to get me past the 3 years. I too am sad to see that it's not holding up for many. I sure hope they come out with something else soon!!
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Nicole- Ibrance doesn’t work at all for some 40% of people ( just like Xeloda, afinitor, taxol etc don’t work for everyone ) there is a median time it works and then people fall on one side or the other of the median time. There are lots of theories. There is some thought that if you haven’t taken any of the hormonals as a previous treatment that the Ibrance /hormonal lasts longer than a person previously treated with a hormonal. But, if you listen to the experts ( for example that podcast I posted about) there is a lot of speculation and “art” of medicine going on until we get more answers.
Try to enjoy feeling good and not having to make any treatment decisions right now -none of us knowsor can control it - worrying “borrows from the future to make the present miserable “
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My port was put in almost 8 years ago as an outpatient day surgery. I still have it. I never wanted it out, some ladies can’t wait. It doesn’t hurt to access it, nurse zaps it with freeze spray. Same for flushes. They used it for my last surgery to run all the meds for that. Was great. Will start using it for labs, as I now have lymphedma in both arms
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My wife is on her first cycle of Ibrance, still adjusting to her MBC diagnosis about a month ago, and this thread has been quite a roller coaster for both of us. On one hand, it's SO encouraging to read that so many here have seen stability or real reductions in the size of their tumors (with tolerable side effects). On the other, it's heartbreaking to read real stories from real people when the Ibrance "solution" is no longer effective. It's one thing to read the statistics and another to read about real success (and set-backs) from real people.
There is so much helpful information located throughout this thread, and I find myself checking in on it several times a day. I also continue to be SO impressed by the courage and encouragement that you ladies are able to exhibit to each other day-to-day. My hat is off to each and every one of you.
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BLMike, I know what you mean but important to remember that all of us are different. No two cancers are exactly alike and respond alike...thank you for the hats off to us but I'd like to say hats off to you for helping to gather information for your wife! She is lucky to have you. I know her diagnosis isn't easy on you either. My husband (also a Mike) is suffering in so many ways adjusting to our new "normal". I have just completed my 4th round and my PET/CT a couple of weeks ago found that the liver is cleared up! We have to be grateful for all the improvements and hope they continue to work for as long as possible and also maintain the hope that something new will come available if/when the Ibrance is no longer effective.
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Nicole this site isn’t “a new normal commercial”. This is the reality of MBC. We celebrate clean scans, support and encourage doing the best we can, and plant our feet firmly having everyone’s back when it comes to navigating whatever this disease throws our way. Many have been on Ibrance combos for months and don’t want to change treatment especially if we had chemo infusions years ago. Do the best you can and keep your faith.
Port support here. I got it before I needed it bc only can use one arm and it sucks to miss a vein etc.
Take care all
Tanya
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Thank you all for your kindness and well wishes. I started the Eliquis this morning so the first step has gone smoothly.
Tomorrow I meet with my Dr Angel and decide next steps.
I am amazing myself at how calm I am. I think alot of it has to do with the support you all provide and the huge wealth of info you share. I will respond more specifically in a bit. Did not sleep AT ALL last night so just focusing on one foot in front of the other today...
Gumdoctor
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Wow I cannot believe how naive I can be (I am not generally a naive person) but I thought people can have like over 5 or 10 years on Ibrance...lol Now I just read the person that posted 3 years is probably max. wow. Ok.
I do fall into the category of never having had any hormone drugs...it kind of makes me glad that I didn't do the tamoxifen now with my original InSitu.
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Fightingirl -- Thanks for the kind words. This is all new to both my wife and me, and we're (both) definitely still adjusting to our new reality. The support offered from this thread is helping us through the transition though. Good luck in your battle.
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I just completed my 4th cycle of I/L and had my 1st PET/CT scan and showed improvement (currently no visible areas were noted on the last scan). Happy Dance!! I don't post much, but I do read all the postings on this site regularly and it has been very helpful.
Speaking of the port - Love mine. I got it at the beginning of my treatment and won't ever let them take it out. it makes the blood draws SOOOO much easier.
Thanks to all
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I too have a Port. When I was first diagnosed with Breast Cancer we thought it was Stage 2. So mastectomy, Port, and started chemo. Then we found the mets (was there all along). So Port is still in. I asked my MO about taking it out since I am on pills, but she said No. She said we may need it later (chemo again). We flush it monthly. Sometimes we can get blood from it, sometimes not. I don't really like it. I am skinny so it sticks up and can be bumped easily. And kind of creepy thinking a foreign object is in my vein. Chance of infection or blood clots. The flushing doesn't hurt and we don't use a freeze spray at my oncs.
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3 years on Ibrance is not the max.There are women who have been on it since the trial stage in 2015 for whom it is still effective. This forum represents probably less than 1% of the women to whom Ibrance has been prescribed. It has been given to tens of thousands of women.0
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Fightingirl, get a port, get a port, get a port. Did I mention that I think you should get a port? I have had mine since original chemo five years ago. I only did two chemos. It has been used for tons of blood work, pet scans, ct scans, biopsies, and I may not even remember what else. I will die with it. I will be cremated with it. I will be buried with it (in my ashes). It is my best friend. It does not hurt to have it put in. It does not hurt to use. My cancer center is in the habit of injecting lidocaine before use. I let them do that exactly once. I hate lidocaine. It stings like crazy. I use a cream called EMLA about an hour before use. No doctor told me about that. I was told about it right here at BCO. I got an eye roll when I asked for it but still got a script for it. I have been using the same small tube for five years. I just used it this morning for my regular MO appointment for blood work. You will have blood work on Ibrance. It should be done every four weeks before you start a new cycle. Your doctor may be reluctant because it will be extra work for it to be paid for by your insurance since you are not on IV chemo. But it can be done and you should ask nicely for it. Then ...
Can you tell I just got home from MO appointment?
Just completed cycle 37 of Ibrance. Started in April 2016. That's more then three years and I also took several cycles off for various reasons. You do the math. I can't right now.
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Nicole- 3 years max is someone’s guess. I’m at morethan 3 1/2 years and feel good.
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Isn't it time-for-a-cure that has been on it for over four years? She doesn't post often but may be the longest of Ibrance thread posters. I know she reads. Hi, Kitt.
Welcome, Mike. You are one of the good guys. There was a woman at my MO's office this morning (kind of a theme here) who was weak and hobbling around with that huge lymphedema thing on her arm and her DH just sat and watched her struggle with paperwork, etc.
Me2018, wow on the scan. What great results so soon. Happy dancing with you.
Gumdoctor, you can't believe how calm you are and didn't sleep at all. At least when you don't sleep, the next night you probably can.
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All, I didn't mean to say three years was my max. I am looking happily towards having many more years on Ibrance. It is new enough that it is totally possible. Just that part of my emotional journey cycle is every three months waiting to hear after scans of possible news of progression. I celebrate each time I get to that point because I am still here, and I know that there are more options waiting for me after that if needed. I met with some old friends today who marvel at how well I am doing (and looking although I hate the way I look now). This is what I wish and hope for everyone here.
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Gumdoctor, you must be really having to take a breath right now. Scary for us all and inspiring that you’ve found the time and strength to post and let us all know how you are...I think we all need to know the real as well as the possible. Onwards missus.
Re Port agree with Jaycee and others absolutely get one if you need IV... I had one in 12 years ago for almost a year....a bit like the princess and the pea as it was put in over my ribs as a bit of an experiment (my doc was working with children with cistic fibrosis and had used it there... he was transferring the tech). Absolutely great and relieved so much stress once the nurses got the hang of flushing it
Can I just whisper... CT results finally in. ‘ No evidence of disease whatsoever’ according to Onc. Cycle 10 in and very relieved, but aware not the same for everyone.
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Karen, no need to whisper. We rejoice in every bit of good news. We are all pulling for each other.
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Karen, WOOHOO. Why would you whisper? Shout it from the rooftops. Yeah, I know. Survivor's guilt. I have it, too. It's such a tough situation. But NED? Wow. I'm really happy for you. And really glad you finally got results. Worth waiting for, I guess. But why introduce that kind of stress to cancer patients? They know stress is not good for us, right?
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Karen, you're not allowed to whisper good news like that, my dear! We all have to celebrate every victory. Congratulations on kicking cancer's behind and here's to the next 10 and the next and the next and.....
fightingirl, Re: the Port....What Jaycee said. Just do it! You're under anesthesia when it's installed and the soreness lasts about a week. Mine doesn't hurt when accessed.....just a quick stick like getting your finger pricked.
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Re: Time on Ibrance. There are people out there who've been on Ibrance since the trials began. I don't know when they started but one person I met on Facebook was 5 years out. My guess is that we don't see those long timers here because they're just downright bored with us and are out there living their lives! I'm good with that.
I started Ibrance 100mg October 2, 2016 and had a remarkable response in just 3 months. Low counts have caused me to pause for only one week in all that time. I took about 7 weeks off in early 2018 (my choice) because I got the flu and pneumonia. I got really close to NED that summer and decided to switch to 75mg with 2 weeks on and 2 weeks off. The next scans showed me with some progression so I went back to the old plan with 100mg/3 weeks on/1 week off. I've remained pretty stable since then. So that's 34 months altogether, friends.
I expect to keep at this while realizing something can change with any scan. I also know that the world of MBC treatment is moving at a rapid pace. Where once there was only IV chemo, many options have opened for us and more are coming. My doctor already has something in mind for me that had not yet been approved for MBC when I started Ibrance. In fact, in my 25 years of breast cancer escapades, there has always been a new drug that hadn't been available during the last go-round.
My husband and I have a little devotional every night and remind each other that we only have to do this day. As was said above we can borrow trouble and lose today. It doesn't mean we can't grieve or feel the fear but it helps to find other things to occupy our thoughts. FYI: I found a book back in 2012 when the cancer first metastasized, "Fearless" by Max Lucado. I've read it over and over and it's been so helpful. I think you can read part or all of it free on the Internet or get it on Amazon.
Love from PatGMc, living in a hopeful bubble and inviting you to jump in!
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Karen--- Wooohoo, Yeah, Alright, Way to Go !!!!!! No whispering. Shout it !!! Another win we all can rejoice in !!!!!
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I saw an old friend at our last MBC support group meeting who came to share her story of hope with everyone. Forgive me if I don't have all the numbers down but the baby Luane adopted 2 or 3 years after her MBC diagnosis is about to start her Senior year of high school. On the days you wonder how long people with MBC survive, add that up! She had bone mets and hasn't been in treatment for 18+ years.
This is someone who was treated before the new classes of MBC drugs came along. There was only chemo.
You can have a long life after MBC. Luane is living, breathing proof of it!
Love from PatGMc
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Hi everyone,
I am still dancing from my last PET scans results several weeks ago. All of my bone Mets are resolved along with a lymph node in the hilar region. I have two lymph nodes still showing active but one is 50℅ smaller and the other is 75% smaller. Hoping this continues and maybe I can say I am NED.
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Pat, I had ZERO soreness after my port installation. And I feel NOTHING when it is accessed when using the EMLA cream. It is a little work but so worth it. I hate pain.
Fightingirl, have you called yet to set it up? May take some time because your doctor will have to jump through some hoops to get it approved. Sorry. I feel bossy today. Don't wait until your next stabbing. Do it now.
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Great news Karen. I understand the whisper, we all do, but do a happy dance for those scan results.
Tanya
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Hi All! Didn't mean to start anything with my 3 years comment! I was only repeating what my MO stated at my last appointment and that it's 3 years AND LONGER is what I specifically. I went on to say that we all respond differently and no 2 cancers are exactly alike so we do have to take what we can from these drugs, support one another and hope that something else is always available that will be effective for us.
Karen, I agree with shouting it from the rooftops...it gives us hope!! I love the encouragement from one another...in this crazy journey, we need it!
Simone, congrats to you as well and I wish continued success for you!
Jaycee and all who responded about the port...thank you! I didn't mind you being bossy Jaycee...my first sentence is kind of bossy too!
It seems only one person does not like having theirs. Also, can you swim/bathe/shower as normal? Thanks and much love to all of you braving every day we get!
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karen fantastic news!!!!! I’m cheering and yelling whooohooo for you!!!!
It is interesting about the survivors guilt. I actually feel not envious but optimistic by your story Karen. That perhaps one day I’ll hear those same words that you’ve been gifted “NED.” Your story keeps me energized and able to pull myself out of my bed every morning! Please continue to share!
I’m starting Cycle 27 in July. I never thought I’d make it this far.
Pat - I love love love your shares and I hang on every word!!! What a brave woman, your friend, to adopt with MBC! I had my ovaries shut down at age 40. Never had children. It seems like a far out fantasy to imagine having any at this point. Luane provides light at the end of a very dark dark tunnel for me.
Love and hugs to all,
Philly
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Sure you can swim, shower, whatever you want in/with water. Unless your skin leaks LOL, it’s completely covered.
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LaurenH: Thanks for getting back to me with your experience with Herceptin. I'm glad you've had such success with it and not such terrible side effects. I'll know more after my tests tomorrow. Kind of anxious but trying to keep busy. Appreciate your thoughts.
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LoveFromPhilly, Luane went through lots of fertility treatments and then some major down-to-the-wire adoption disappointments. She finally decided to do an Open Adoption where the baby's mother chose the adoptive family from a portfolio. Luane's oncologist was asked to write a letter stating that she was in good enough health to raise a child. Are you ready for this? He refused! He said she wouldn't live long with MBC. We found her another doctor who wrote the letter and look at her now....perfectly healthy after all these years.
Philly, I'm so sorry you weren't able to have children. I have other friends who faced the same disappointment and it was hard. One of them decided to become a "chosen grandmother" to my granddaughter, even got her own one-of-a-kind grandmother name and a lot of love. Another volunteered to rock babies at a local hospital. Others have been foster parents. You have love to give and there's someone out there who needs it.
Fightingirl, you don't want bossy me and Jaycee on your case. Make that appointment in the morning and shut us up!
Simone, I think you can call that as good as NED! Hooray for you! Imagine the new Ibrance Dancers who are seeing these hopeful stories today!
Love from PatGMc
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