Ibrance (Palbociclib)
Comments
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hello ladies!
After a year of lurking in the shadows of this wonderful thread I have decided to step forward and introduce myself to you all. I want to tell you wonderful woman how much of a difference you have made in my journey through the ups and downs of MBC.
Unfortunately I am coming forward today with some upsetting news and seeking some advice. After one year on Ibrance/letrozol (sp) with bone mets only, a CT scan confirmed a suspicious lesion on my liver. The radiological Report describes it as undetermined but suspicious of metastasis. My onc wants to want and rescan in 3 months with no change of my current treatment of125 mg ibrance/let. I am Er/Pr + her2 - and was Dx stage 4 de novo in Jan 2018. I am shell shocked and not sure what to do or how to feel. Any comments would be greatly appreciated
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hey Jaycee,
Please don’t read so deeply into those stupid commercials. The relentless mostly refers to MBC being relentless and there’s a pill to take every day for that. We are all in this together. We all are trying to keep on keepin’ on......it doesn’t matter how many pills we take. We all have the same goal - more time...and someday - a cure.
A Verzenian
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Praying, is a liver biopsy an option for you?
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Joyner-
Onc wants to wait 3 months to rescan before we discuss biopsy. It did appear that he would go that direction if the scans showed growth of the lesion. Thanks so much for your reply.
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Praying - Welcome to the group. So sorry to hear about this news. Hoping for good things for you through this challenge. We are here for you.
Gumdoctor
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Praying, I know it's easy to say, but my husband's favorite response to news like that is, "Don't think about it." When you have MBC, EVERYTHING that shows up on a scan is "suspicious of metastasis" - and lots of those "lesions" or "growths", or in my case, "nodules", turn out to be nothing. If your oncologist is confident in waiting, and you accept that path, you seriously have to not think about it. Get it out of your head, or it's going to be a very looooong three months. If it's progression, you'll deal with it then, and we'll be here!
As for the "relentless" commercial - hey, I really do prefer once a day, for 21/28 days, over twice daily. If Verzenio and Ibrance were compared head-to-head, and Verzenio was clearly advantageous, that's one thing, but as far as I can see, newer doesn't mean better. And yeah, anything that comes with its very own bottle of an anti-diarrheal is a "no" for me!
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Fiddleman, Galapagos how wonderful! Glad you went anyway. I have recent progression in a few places, liver, stomach and have just finished first round of Xeloda... not bad on side effects, much better than infusion of Abraxane that I was getting. The Ibrance/faslodex quit working in September, but I can't bring myself to leave the warmth of this room.
My honey surprised me with a trip to Belize that I'm just returning from, he loves to dive and I snorkel and we've been wanting to go there for some time. What a beautiful trip.. lazy, relaxing adventure. I didn't have the strength or stamina to snorkel as long as I usually do, but I did do some and it felt good.
Forgot about doctor visits etc. for a week...loved it. I've been on leave since after Christmas and my goal is to finish out the school year.... going back to work (special ed teacher) with a much better mind set and my fight back.
Metaphor for cancer, hmmm well sometimes I like to visualize the cancer as the invaders in a video game and my meds are the lasers targeting and zapping their crazy asses.
Seaway, I think the US is one of the only countries that allows advertising of drugs. I am soo annoyed by those commercials too, so thanks to everyone for that perspective check on them.
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praying4u. I can very easily imagine how this news rocked your boat. With no organ mets it seems from data you could expect over two years in IL. But no, no wonder you're surprised. I recently had progression after 20 month on IL. But, my liver mets never responded to IL, only my chest and lung. My liver mets responded to y90 radioembolization with SIR Spheres. How big is your lesion? Anything over 1 cm can be biopsied. My last liver BX was done w ultrasound and did not hurt at all. There are several good reasons to go ahead and get a BX.
If so, you will be sent to a Interventional Radiologist. You can research and find out if he is an expert in y90. That procedure was effective for me, I had lots of mets, for 18 months. It's a good TX. I will do it again if my IR says I'm a candidate.
As you can see, I'm a get moving person. I like to find out information, no waiting three months for me. Unless it's not big enough. But, three month wait is reasonable, depending on what your MO says she'll do next, especially if it's only mms.
In fact I just got burned by waiting four months, I lost four months of treatment time. It's a long story. Just remember liver mets are not bone Mets. They are much more stubborn and difficult to treat. If you were to say to your MO I'm not comfortable waiting three months, she should not be offended. She should order at least an MRI or BX or both.
I'm currently doing terrible on my second line TX, the infamous AA. It lives up to its reputation. But, it would be an excellent weight loss pill. Hahaha💞
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Fiddleman- I LOVE Sheldon !!!! No, I do not have mouth sores. Not yet, at least.
As far as chemo brain, I don't know if what I am experiencing is that, or normal aging, or stress related. Sometimes during a conversation with someone, I just blank on a word or name. I just pause for a second and my mind whirls thinking "what is that word" to describe something or "what is their name". Can Ibrance do that??
My Metaphor for my cancer is this ( I have posted before )----- You know in those thriller movies the female victim is hiding behind a pile of boxes or such and the attacker is looking for the woman and mockingly saying " Suzie I see you. Come on out. I won't hurt you. I will find you sooner or later". I am "Suzie" and the cancer is the attacker. I can hide only so long. He will eventually find me.
Praying4u- Welcome. My opinion is probably to wait the 3 months and rescan. Then biopsy. How large and where is the area? Is it large enough or in a good area to get a sample?
Bumping my question about hair loss/thinning. You all with that problem- did it come on after SEVERAL months of Ibrance use?? Can we have side effects come on after being on Ibrance for a while. Maybe those that have been on Ibrance for a while can chime in. Do you have new side effects start---hair, mouth sores, etc?
I saw my PCP yesterday. Just reviewed my Labs, MRI, CT and discussed my symptoms. Come away--- check thyroid levels (hair thinning) and discuss latest CT with MO (next week). See PCP in 4 months. Nothing special. Just keeping PCP in the loop. Glad he is in the loop, but nothing really offered to help with chronic symptoms--pain, fatigue, etc. Maybe nothing to do.
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Candy678- so my SE after eighteen months my S can vary from month to month. I had more hair thinning after a few months on I/L but I've noticed the last couple of months not nearly as much. I've had a few mouth sores but they easily disappeared after a salt water rinse but this month I have a canker sore and a couple sores on my lower lip that I'm struggling to get rid of. And my tongue often feels like it is a bit burned. Rashes and a few hives come and go. And fatigue is very variable, has never been terrible but noticeable. Time for you to turn the tables on your cancer metaphor- you become the attacker and go get that bastard! A funny story - every time I take my Ibrance I say, “ Go get 'em!" and my husband adds, “Go get the mother#$*&@#!." If my grandkids are there we try to clean it up a bit and the grandkids will add something too. Last time my eight year old grandson says,"Are we supposed to say get the little assholes or something?"😆
Praying4u- sorry you have to be here. Those scans are so hard to read and have 100% confidence in them. You may want to consider a second opinion. I did early on at a larger cancer center that is also research and I felt better when they agreed with my course of treatment. I continue to go there once a year.
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Katy, I love your name-calling story...especially your grandson! So funny!
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Joyner,Katyk, candy-678,grannax, ciaci, and gumdoctor
Thank you so much for your warm welcome and support! It feels like a super size HUG! I now wonder why I waited so long before joining you great warriors. I encourage all "lurkers" to jump in... the water is great !
I am waiting for my reports to post so I can review the details. I wish I can get a re-do of my appointment cuz I literally remember very little of the technical conversations. My husband and I both shut down after we heard the words lesion and liver. I treat at Moffitt in Florida and I have confidence in my Onc. However after I review my reports I plan to have another conversation about Bx and get your options. Again thank you for the support and I hope I can return the favor
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Praying4U, I'm sorry there's an undetermined spot on your liver. I'd be inclined to wait and repeat the scan in 3 months as you MO suggests. I also know how worry and wondering can be, so before a biopsy I might ask about a MRI of the liver. I've followed friends on the Liver Mets Thread and for some the MRI is the only good picture they get for their livers. It's a pretty noninvasive next step and could give you the advantage of being proactive while not disturbing anything medically. I can recall having a hypodense something show up on one scan and then it was gone the next. I hope you'll find that yours is too.
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Hello, fellow Ibrance Dancers,
I'm just popping in to say hello and to remind you that I pray for all of you everyday. May you have peace and comfort and lots of laughter.
For you new people, I've been on Ibrance/Arimidex/XGeva since October 2, 2016. I pray it works well for you! I'll be a 25 year BC survivor next month and have been an MBC survivor since 2012. I remember when I first came here and got a big shot of hope from friends who were a bit further along than me. I'll be forever grateful.
I've teased about living long enough to one day just go to bed and die from nothing. Someone in my world did that a few days ago. She was 55 and not sick, just went to bed and her heart stopped during the night. She's the second person I know since Christmas that has happened to. I hope all of us make up your minds to truly live everyday regardless of the fatigue or other side effects. It's all a gift.
Love from PatGMc
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Thank you KatyK for your insight on the side effects of Ibrance. Also the story about name-calling the cancer. Funny!!!
Anyone else on Ibrance for a while--PatgMc or others. Do your side effects come and go month to month? I am hoping the new hair loss for me is temporary and will slow down after a bit--2 months now. And that I won't develop new issues--mouth sores, etc.
So I see my MO this week to discuss the latest CT---done early this month. There was a blip noted on the liver. Probably just artifact, but could be starting of a new lesion. Either way, I will have progression sooner or later, we all will. So.... How does the MO decide what the next treatment will be??? How do we know the Ibrance has quit working vs the hormone therapy?? I know some have posted here that they have discussed the next step with their MO. I have not had that conversation yet. Maybe this weeks visit can include that. If the blip is nothing this time, at least maybe we can open the conversation. Thoughts..... How do you know what med to quit and what to start for 2nd line treatment ( I think that is what it is called when you change treatments ).
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Candy, I was on Ibrance/Faslodex for 23 mo before having to move to another line of treatment this month. During the early months, I noticed a bit of hair thinning, but for me, that stopped, and my hair was fine thereafter. When asked earlier in the process, my onc declined to discuss next line of treatment when Ibrance was effective (or appeared to be), as he said that it would be situation dependent.
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Pat, so wonderful to see you. It's been a while. So sorry to hear about your friends. Joyner and I were just talking about how much we miss you.
Candy, I have been on 75 mg for 33 months except for the first month on 125 mg. As soon as the diarrhea SE showed up, I dropped down. A little hair thinning and maybe a little constipation but really no SE's at all. Once, my MO mentioned AA after I/L fails. She brought it up. I don't remember how it came up but we talk about all kinds of things during my appointments. I don't ask her because it seems like kind of putting the cart before the horse or whatever that expression is. I will let things play out first.
I went to an in-person BC support group yesterday. They always have a speaker. This time it was a reconstructive breast surgeon. He was a very good speaker and gave us a lot of information. You would be proud of me. I did not correct his typos on his PowerPoint slides DURING his presentation. Not even after. Afterwards, I talked to him alone. He needed a very small education. For instance, on one of his slides, there was a list of advantages of having reconstruction. The last item listed was "you won't be reminded you had cancer by your missing breast." LIKE WE HAVE TO BE REMINDED. He promised he would remove that item. I let a couple other insensitive items go but had to react to his reminding his patients that "you can replace it and feel almost normal." I guess the "almost" was a concession to sensitivity but NORMAL? I am flat on my left side and feel completely ... never mind. I know I am not normal but that has nothing to do with my breasts. What is normal anyway? Do you have to have two breasts to be normal?
At the end of the meeting, there was a short presentation by a group of college students (I live in a college town). They were talking about a program to support children whose parents have cancer. They provide a wonderful summer camp for the kids all run by college students. It operates in 42 states so you might check it out for your kids or grand kids.
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How accurate are tests/scans ? This is driving me nuts. I still have original tumor which 7/2017 was measured to be 6cm. Ameridex (sp) for a year did nothing. Now I'm evaluated for effectiveness of F/I after 3mos.
CT on 1/8 said breast tumor had shrunk to 4.5cm
But then a sonogram for a biopsy on 1/22 said breast tumor is 5.25!!! Don't know how the ONC can go by these scans. UNLESS, and I don't know, cancer can spread that fast. (this is while still taking the F/I)
I have IDC grade 2
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I'm going through the same ordeal. My pet scans are encouraging and show continued improvement and stability. New MRIs to look at details to diagnose continued pain are not. comparing my MRIs from last February and this month indicates possible new activity so I have an appointment Wednesday with my radiologist to get his take on the conflict. Onc said it may be area already treated or scarring that took up contrast but she felt new cancer wouldn't grow that fast in eight weeks. Still, I'm taking small dose of Zanax to head off unpredictable anxiety attacks. Those started when my son died but the cancer and meds have stripped away any self control.0
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Yes, I know Jo, I take Zanax too. I'll be praying for you.
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Snooky- I think we are cut from the same cloth!!!!! We want specifics and accuracy. From what I have been told by my MO, the measurements on the CT scans are not computer generated, but measured by the radiologist. There are always discrepancies in my scans from one CT to the next one on the measurement of my original tumor of the liver---increase then decrease from one CT to the next. Does it shrink then grow again?? My MO said each radiologist ( not the same person reading each scan ) that reads the CT will measure the lesion and can get different measurements. WHAT!!!! I would think in this techy world, with the computerized scans, the computer would measure the lesions and generate a measurement in the reading of the scan. I guess not. I am confused also and wonder how the docs can make a decision about our cancer if the measurements are all over the place. In my example, we are looking at comparing CT to CT. In your situation you are comparing CT to ultrasound. Either the docs are WAY smarter than us, or they are "practicing medicine". Great thought. Others chime in and help Snooky and myself trust the docs!!!!!
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Candy.
Of course, my memory sucks, but I've read a lot about a brochure on this site. It out lines all the standard of care options that the onc's go by. Find Bluebird?????? and she will email you one. Please, though, live in today and don't jump ahead. Folks on this thread are getting long runs on the combo. You can too. Stay positive. (I know, I know, it's hard)
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Is it not Bestbird that wrote that guide?
Gumdoctor
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I also like people to read the NCCN patient guidelines. NCCN is the National Comprehensive Cancer Network made up of 25ish facilities across the country like Mayo, MD Anderson, etc. They write professional guidelines for all cancer facilities to follow. They also write the same guidelines in patient-appropriate language. They write these for most all cancer types. And of course they have one for us MBC types. I do not have the link in front if me but if you google NNCN guidelines, you will easily find it.
Hope this helps.
Gumdoctor
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Thank you Gumdoctor for the correction. I'm sure that you are correct. Bad memory. HUGS
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Oh my gosh Gumdoctor thanks for the heads up on NCCN! Wish that I'd had that a year ago. I quickly breezed through it. Will study more later tonight. It's a great source of information. Snooky
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Hi. Follow the below instructions to get Bestbird's guide.
Send your request to Bestbird's email. This is a great source of information that she continually updates.
For new requestors: follow the simple 2-steps below after reading the TERMS OF ACCEPTANCE:
Step 1) Email your request to bestbird@hotmail.com
Step 2) In the Subject Line of your request, type in the words: MBC Document Request Terms Accepted by <your email address>
Candy: I am starting cycle 28 Ibrance 100 Letrozole or entering my 26 month. My hair is okay, slight thinning near temples and top of head. On occasion, will get mouth sores and also any other mucosal area, but not predictive. I am the most fatigued on the week off. My MO said fulvestrant is next.
Scans since liver is my issue: Every 6 months CT and bone, alternating 6 months with liver MRI. My MO does not order PET scans.
Hope this helps.
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Candy totally agree with everything you've said. I need to stay positive but it's hard once you find out what it is that the ONCS don't know. I've just had to give this whole mess to GOD, I've had no medical training and so much of this research is way over my head. You're always in my prayers Candy.
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Thank You SandiBeach
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Welcome praying4u.. prayers for your decision on CT Scan.I see my Onc q month and even though less then a year for me on this site..I do learn from our peers.as I did when first diagnosed with BC in 2008. SE for me hair thinning , teary eyes woke up this a.m and one eye closed ..looked like a pugilist lol😂and had to rinse it with warm water. Since Onc switched me from 125 to100 mg of ibrance N/V gone..Feel much more like my old self..Having CT scan of abdomen chest and pelvis.Feb 5th.mets just in lungs..but she thorough.If I have a cold the cough lasts long time..This time two months.I told her probably cough longer since I still have few mets in lungs (LOT less since Ibrance shown by PET in late Sept) She quipped no cause you're 78....😄.I'll be 79 before I see her for CT reports..But she knows I am young at heart...My mom was too...Hope I have some of her genes..She died week ago tomorrow at 102.😇.We all will miss her but happy to have her so long..TY for your prayers 2...all of you! TY!
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