Ibrance (Palbociclib)
Comments
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Love it! Here's what I'll do: I promise to give it some serious thought. Currently, I'm dealing with a vertebrae fracture that comes ahead of a port. I've had one doc say surgery and one say he wouldn't put me through the surgery so now I've got an appointment with RO next Tuesday.
I'm sure ya'll can relate that I'm kinda tired of doctors so I'll tackle this fracture and then move on to port or no port decision!
So appreciative of the bosses though!
Celebrating the good, sending hugs for the not so good, and wishing for the best for us all.
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gumdoctor, how terribly distressing — but I hope you can keep the faith! So much fast progress and amazing treatments coming down the pike. Thereis sooo much reason to hope!
I celebrate good news with Karen and Simone. Don't be quiet about it but know how much it cheers all of us!
Nicole I begin cycle 31 this week There's no one approaching 10 years because even the trials didn't start until I think 2014. There is quite a range try to savor every day and know there is so much reason for oprimi!
Love, Penny
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Find so much hope on this ibrance thread. Finishing up one year of ibrance and letrozole with extensive bone and organ Mets.
“ You can have a long life after MBC. Luane is living, breathing proof of it!“
❤️❤️
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This is crazy if you ask me! Why do you have to beg for SSI when you have stage 4 ? It’s not giving up on life, it’s trying to enjoy what life we do have!
Just like retirement, some want to start at 65 as they see it as enjoying life while they have their health, for others, their idea of enjoying life is to continue doing what they love most,...work!
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Anewbreath, Congratulations on your one year as an Ibrance Dancer! Luane is not the only long term MBC survivor I know and love; there are so very many out here. I expect lots of the people who lurk or post here will be around for a long time! Let's you and I be among them!
I think we should all look in the mirror tomorrow and say, "Hello, girl, you look like a survivor to me.....Let's wipe out lots of cancer cells today!"
Love from PatGMc
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Hi all - I just want to thank GumDoctor for checking in - been thinking about you. Sounds like you're in a good headspace and you have every reason to be - as PatMcG so graciously reminds us all so warmly and so often - we all have lots of reasons for hope. So grateful for you, Pat.
I also want to celebrate the great news from those those who had good scan results! Please shout out all good news - and not so good - we are here for all of it... through thick and thin, as they say.
Re the port chat: I get Herceptin every 3 weeks and blood work at the same time. I also get zometa every 6 months. Like most, I have only one arm due to lymphedema and some failing veins. Even still, I have not ever gotten a port - even through 18 months of chemo/Herceptin the first time around.
I have had up to 7 sticks to get a good vein but most times the nurses can get it on the 1st or 2nd try. For some reason, this doesn't really bother me at all - except that it delays things. I have a tendency to get infections and other skin issues so a port feels like more trouble than it's worth in my case. I also don't want a constant reminder sticking out of my chest. Just my two cents from a dissenting opinion.
Love to all,
Lauren
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Jaycee great memory. I am on my 49th cycle - just over 4 years (took a few off for various reasons). My tumor markers returned to normal after 4 cycles and when they removed my metastatic lymph node, there was NED in the tumor. I have had lots of scans since, and get monthly blood work, and continue to be NED. I only hope all of you will have the good fortune will I/L that I have, and for the rest of you, that your next med will be the homerun.
Congrats to all withthe great scans - proud to be part of such a great group - even if i don’t post too often. I always check in to see how the ‘ladies’ are doing before I go to bed each night.
Sweet dreams to all - Kitty
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Thank you, sweet Lauren.
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Kitty, I just read your post to my husband and he was so tickled! You make me want to get the one lymph node that shows uptake removed. I have long thought it wasn't cancer. Did yours light up on a PET/CT?
Thank you for posting tonight as we all need your infusion of hope.....some in ports, others in veins...it's all good. ; > ) .
Love from PatGMc
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Gumdoctor, I am so sorry to hear about your progression. Along with everyone else on here, I hope the next treatment is the one to tide you over until the next big thing. Speaking of which, are you considering any clinical trials? I’m not familiar with those designed to go after faslodex, since I’m on letrozole and my MO focuses on those that would fit after that, but maybe Dr. Angel can come up with some?
And cheers for Karen and Simone. We need your good news to give us the strength to cheer each other on when the news is not so good
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Good morning ladies
I’ve been on Ibrance for 24 months. I had only 1 extra break for a week when I had radiation. I get the faslodex shots and zometa every three months. 100mg. I started at 125 and dropped as low as 75mg. Surprisingly 75 made me more tired.
I had my first port in 2003. Veins didn’t like the chemo and it’s a one armed dancer over here- lymphodema.
Had the port removed a year after first treatment. New port in 2017 when MBC came around. I know my veins and they are hard to find rollers. The main difficulty wasn’t the bloodwork but trying to thread the catheter there’s scar tissue which prevents mostly all vein avenues in my left arm. When I came out of surgery I had an IV in my jugular vein. That helped me make a decision about the port too.
I swim and bathe lol no leaks. It doesn’t look cute but it doesn’t bother me.
Have a wonderful day ladies and gents
Congratulations on all the great scans
Tanya
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pat ❤️❤️❤️❤️❤️ I am amazed by your friend Luane!! I start to daydream about the idea of having kids and then I hit so many walls like: I am single and don’t have a partner to help, I need so much rest and quiet time now more than ever, I have no $$$ being that I’m working part time and am self-employed...etc etc etc...I will continue to be a great auntie to my amazing niece and delicious nephew and my friends children. It is a hard pill to swallow. I cried my eyes out the day I received my first Lupron injection because I felt as if my fate was being determined for me. Sadly, my MO did not discuss anything about freezing eggs, parenthood, etc...everything moved so quickly from diagnosis into treatment. I hadn’t found BC.org yet to ask questions and clear my head. It felt like do or die at the time. I love my MO but he did tell me that the prognosis is 1-5 years. And my mind wrapped around that and figured I was a goner, so no time to consider being a parent. I have to be at peace with it all, because what else can I do? I am planning on writing up a manual and/or patient handout for my MO’s office to help teach the MOs about having these kinds of talks with patients (like me) and for patients, who (like me) were scared as hell and did not have anyone discuss these types of fertility issues with them. Also, no one warned me about my libido, dry vagina, and thinned vaginal tissues. Something else I will add to my manual!!
On a different note: this is the second month in a row that I have had a sore throat at the end of my Ibrance cycle. Last month I was traveling and figured it was a viral infection. It seemed to clear up once I was home. This month, I was traveling but nowhere too far from home. And I’ve had this sore throat since Friday (today is Wednesday).
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LoveFromPhilly,
I've had 2 sore throats! I didn't even put it with the medicine as I thought oh crap low WBC and I'm about to go down from something I caught....but then I bounced back and no issues. I did not pay attention to where I was at in my cycle...I will going forward if it happens again.
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It's so crazy how the side effects change. I'm just about to the beginning of cycle three, but I'm feeling that fatigue on the break week this time. Also the itching this week for some reason. Noticing more hair coming out in the shower. My neutrophils were 1.3 two weeks ago. I'll have the bw done tomorrow and hopefully all is well to start cycle three. I can hardly believe it - cycle three already. I feel like I'm still processing my diagnosis, much less three months into treatment. LovefromPhilly - a manual sounds great. There is so much they don't say. Last month I asked my oncologist "will this fear get less overwhelming?" She was very kind and encouraging with her response - most of which was ' here is our experience with our patients on this drug and you can do this'
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Thank you PatgMc!! I’m so grateful for the knowledge and experiences that are shared on these forums. I can’t even imagine how I would have felt with this diagnosis at a time when this wasn't the case. I naively thought I was cured after my fist go around in “08” I had to take a deep breath just to look at the MBC boards for a second. The MBC thread was mostly doom and gloom with very little clinical trials available. I never would have thought I would land here. Blessed to be looking at a much different thread Currently. My heart hurts to read about failed treatments and progression but praying that is what is keeping scientists/pharma busy on new treatments. This is a time when it is our advantage to stay on top of treatment options and visit with our doctors about them. I feel like we are hearing about new options for treatment fairly fast. I had to ask my MO (whonot a breast specialist) to switch from taxol to ibrance and he was reluctant but did and thankfully I’m still on it🙏. This is a time to be hopeful even when disappointments come our way. Hope is contagious!!
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Congratulations to everyone that has had good scan/ tests results; shout and dance as much as you can and we will join you in the joy.
I am loving hearing of the longevity of some the Ibrance Dancers . 49 cycles for time -for- a- cure, amazing! It gives me so much hope.
moomala I had extra hair loss during the first few cycles of Ibrance ( I noticed it blocking the shower drain too! euck) I thought I was going to be bald again and searched for my wig I used during intravenous chemo. Over a year later I still have hair and the loss is back to 'normal' for me. I do treat my hair with more respect and use less stringent, 'baby' organic shampoo etc.. I hope the loss slows for you too.
Love to those who are struggling with side effects and difficult decisions.
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About the ports. I havent needed one yet and my good arm has a very cooperative vein. The thought of having one freaks me out. I am trying to understand why. I think its cause a. I know why its there and I'd need it. b. With my sensitve skin I think it would bother me. Likely itch or be sore. c. Not like the way it looks either with or without clothes on. d. Not like the way it feels when I lay on my stomach. Might also have a fear of pulling it out accidentally. Yes it can happen, as in my neighbor when his inexperienced phlebotomist or nurse pulled too hard to access it. M y dad also accidentally pulled out his j-tube ( or is it g-tube) in his stomach for feeding. Either way the idea freaks me out.
OTOH you guys made me feel better about getting one if I need to with all the talk of loving them . . .
Until I need one I'm gonna always hope there will be a new pill for me (us) that I can pop in my mouth. I tend to think I'm a lucky person. . Yep that's the option I pick.
GAILMARY
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Love from Philly -
I can relate so much to both of the topics in your post! Infertility hit me hard at 33 shortly after I was dx. I had just had a miscarriage, having been married 4 years at that point, and my husband and I were in the process of investigating our fertility issues. After dx, I learned that I was 99% ER/PR and pregnancy was no longer an option. I went to visit my insensitive sister-in-law, who had just had her 4th child and was standing in front of me nursing her new baby and said --- So Matt (my husband) said that you will have to get shots to shut down your period after chemo ---- YOU ARE SOOOO LUCKY! No more periods!
I went home that day and cried for 24 straight hours. Loud, ugly crying with my sweet husband at my side. I was grieving. The following day, I investigated adoption. Found that I would need to wait 5 years to complete an adoption, and even then only a few countries would accept me at all (if I wanted a healthy infant). I never looked back after that moment. All energy was focused on building a house with a nursery and special playrooms and a big yard and planning for an adoption. Six years later, we brought home a 22 month old from Vietnam. He is now 12 and remains the center of my world (and as you saw in my previous photo post, he's an amazing athlete! Here's a pic I have handy from a few months after he was home.
Sore throats - I'm sure you've heard me whine here about my monthly infection/voice loss that happens at the end of my Ibrance cycle. It starts as a sore throat. It then progresses into voice loss, often with an upper respiratory infection at the end. I did notice (and maybe it was a coincidence) that the first few times it happened, I was traveling. Since then, it doesn't matter what I'm doing, I usually get it (though I think it has skipped a month here and there). Bottom line, these are documented side effects of Ibrance. I sincerely hope this is a 2-time deal for you and this doesn't come back or progress!
Love to all,
Lauren
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Wow ok... so glad to hear it can be a lot more than 3 years...right now I am just hoping it even works LOL.
Karen..congrats on the good scans!!! WHOOO HOOOO!!! Praise God!
I have been sticking to the Hydroxyzine 20mg a night and Claritan D 12 hour during the day...and I have been about 90% gluten free and my hives and itchy things are starting to calm down.
I think I am like (can't remember who said it here) but they mentioned that they get hives and they are (like me) sides of outsides of thighs and then go away and can pop up in other places in little patches or groups and that they come and go...I think it is going to be my story. Praise the Lord they are a little better right now
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Thank you to All with sending your positive vibes to me. This is helping me cope more than you will ever know...
And to those with great scans, I AM VERY HAPPY FOR YOU. Please do not have any survivior's guilt. It wastes precious tine and energy and these are our most precious commodities...
Just returned from a very productive appt with my Dr Angel. Her name is actually Dr Bagegni but I think of her as my angel who rescued me from Dr Strangler (long story to the newcomers...).
I did my homework and walked in with lots of questions. I understand more clearly what is going on...and it isn't very good in the big scheme of things...
New Tx Plan: XELODA (oral chemo) 2x/day for 1 week on the 1 wk off. Xgeva injections every 4 wks. Eliquis 2x/day for portal vein blood clot (indefinite)
We discussed many many things.
1. She said no to biopsy on liver lesion now due to where it is, blood clot and the fact I am now on blood thinners. Too dangerous. We can re-visit this idea after we see how liver lesion responds to Xeloda and vlood clot to Eliquis.
2. Same rationale against surgery or radiation now. We will discuss options after we see what the lesion does.
3. Xeloda chosen over Afinitor because she believes we will get a better response to Xeloda wirh respect to the liver lesion.
We talked about alot more but I am pretty exhausted now.
Bottom line from our discussion: I am now hormone resistant and we will be looking at chemo from here on out. While she did not say it this bluntly, this is the message she communicated without saying the words.
Studies on Xeloda's median PFS for measurable disease (which is what I have now with liver lesion) show 4 - that's FOUR - months.
Median, of course, means half of the subjects progressed before 4 mos and half after 4 mos.
I am calm on the outside and shaking violently on the inside.
I think many of you can relate to what I am saying and how I am feeling...OMG OMG OMG OMG OMG.......
Gumdoctor
PS - Will be starting Xeloda as soon as it gets into my hot little hand.
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Gumdoctor.
I am so sorry to hear that you received this news. Can I ask since I am not sure what you mean when you said:
median PFS for measurable disease (which is what I have now with liver lesion) show 4 - that's FOUR - months.
Does that mean she is telling you that you have 4months to live? I'm sorry I just don't know what all that means?
I am sending you ((((hugs)))) and I prayed for you too !
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Nicole, PFS is progression free survival. You take the med until you progress again. Then on to the next. Madness.
(Sorry. Still in a mood from MO yesterday.)
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PFS means progression free survival, until the next progression.
Gumdoctor
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Gumdoctor- wishing you the best with the Xeloda! There is an active thread since many people are on this drug with lots of good advice about how to best tolerate this drug.
Nicole-Measurable disease means that it is somewhere besides just your bones or bone marrow. Many studies require that you have tumor in the liver, lungs, or breast etc that they can measure in a scan to see if it is changing size to signify response to therapy. PFS - is the average amount of time that the drug works before you progress.
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Lauren, that is a beautiful and touching story. Thank you so much for sharing. 😊
Gumdocter, you survived Dr. Strangler didn’t you?!? Girl you are strong and I know you have a ton of fight in you
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Lauren, that is a beautiful and touching story. Thank you so much for sharing. 😊
Gumdocter, you survived Dr. Strangler didn’t you?!? Girl you are strong and I know you have a ton of fight in you
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Gumdoctor--- Praying for you always and that your PFS will be wayyyyyy longer than average. We are all in your corner. Keep us updated and PM me anytime you want. Hugs.
So question for the group------- Gumdoctor stated she is on Eliquis now. Anyone else on a blood thinner for history of clots, etc.??? And anyone on Coumadin??? I may be looking at starting a thinner, probably Coumadin, and I have tons of questions. Cannot ask my MO right now ( long story ). Just wondering about liver mets and options for blood thinners. I am going to post in Liver Met Thread also.
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I’ve been on Coumadin way before cancer. Had DVT and PEs at the same time. To me, it’s the lesser evil in terms of bleeding. If you are bleeding profusely from a cut, while on Coumadin, it can be stopped. A shot of vit K like is given to hemophiliacs. The other meds, good luck. I have to have a monthly test to make sure the level is in range. There is a home test, done with a finger stick, if your insurance will cover it.
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Gumdoctor - I have been checking in all day to see how your visit went. I can very much empathize with you. After 3 cycles of faslodex and ibrance, it didn't do any good. PFS on olaparib is 7 months. It is a very hard pill to swallow. I just want you to know you are in my thoughts and prayers - in fact all my MBCers. I know you will be on the otherside of 4 months. We are all here cheering and rooting for you. Hugs
Lauren - what a beautiful story. Beauty out of a nightmare. I am adopted and it warms my heart to see others who have taken that route.
Back to ports - I used to have one. Then I got it removed after initial treatment. I am now thinking about getting it put back in. However, I wish it wasn't right there on your chest. I can't wear a v-neck without it showing up. Wish it could go somewhere inconspicuous.
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Gumdoctor - Frist of all - BIG BIG hugs for you and all you have endured today. We all remain by your side and are pulling for you to wipe this thing out with the xeloda. One question --- How does your MO know - without a biopsy - that you are no longer estrogen sensitive and only chemo will work from here forward? Is it simply because you progressed on Ibrance? Isn't it possible that your cancer found a way around Ibrance but that other forms of hormonal therapy might work? I totally get that you would go a different direction with xeloda to tackle this progression and knock it back IN CASE you are no longer hormone sensitive, but perhaps at some point later (let's say you have a great response to xeloda) wouldn't hormone therapy then be considered? Or at least then a biopsy to prove it is not? Just thinking out loud after reading your summary.
Thinking of you and sending you love and prayers.
Lauren
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Holli - I have a special place in my heart for all adopted children - thanks for sharing that you are also. I believe strongly that I have had to endure breast cancer and lose my fertility because there was this little boy on the other side of the world who needed a mommy. And God paired me with him. This belief also gives me hope in the face of MBC that God still needs me to raise him to adulthood. I am laser focused on doing everything in my power to continue being present as his mom.
Love to all,
Lauren
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