Ibrance (Palbociclib)
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Imagine, agree with Jen, I also progressed around cycle 5 I/L and still on this combo. I understand your frustration I was in your situation, try don’t panic.
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Thanks for the information. My "sugar" consumption is primarily from fresh fruit or frozen fruit. I drink on the average of two diet sodas a month. I think it is grossly unfair that my husband thinks my cancer was caused by and is being fed by the sugar I consume. The tumor marker numbers have been going up steadily and the last two months have really jumped. My oncologist has been vigilant about the numbers and is now very concerned. He has taken me off Ibrance and Faslodex and I will be starting IV chemo next week. I am curious about the side effects of the chemo and how I will be able to function. Any info in that regard is appreciated.
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Wandering- You did NOT bring this on by eating sugar. Certainly not from fruit. Which chemo drug are you go8ng to be taking? Will you be getting a port
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I will either be on Taxotere or Halaven. Yes, I do have a port. Got that when I was in the hospital in February. It has come in handy since I was on an antibiotic IV for 30 days earlier this year.
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Wandering - I don’t have experience with those drugs. I only had the typical stage II adriamycin cytoxin and taxol. I’d try posting on the Bone Mets thread.
As general rules, bring warm clothes and don’t eat your favorite food right after treatment. You don’t know how you will feel later and don’t want to spoil never wanting your favorite food again because of some bad chemo memory. My doctor told me that if I go on chemo again, it will be at a lower dose then what I got the first go around. They are aiming for QOL. Hopefully your side effects are mild and your results are as good as it gets.
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Wandering - Tiffany posted this a few years ago on surviving chemo. A lot does depend on the cocktail. sign up days/meals etchttps://community.breastcancer.org/forum/69/topics...
Sorry you are going through this. Having friends bring meals over when I was going through this was nice. There are a few websites where you can set up a calendar for people to . I think there are several, but here is one. We used this when a friend's spouse died suddenly/unexpectedly. https://www.mealtrain.com/ THere was another one I used during chemo for rides, helping with cold capping etc, but I can't remember the name
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Wandering, Sorry I did not have time to go back and read your earlier messages, but did you have a scan that confirmed progression? Were you taking Ibrance-Faslodex, and are the jaw problems due to osteonecrosis? Mostly, have you had a new biopsy to learn how the cancer has mutated? There are obviously other targeted agents you could try before chemo, for example Piqray if you have PI3KCA mutation or a SERD or Lasofoxifene trial if the cancer has developed an ESR1 mutation. With progression there is always this panic and rush to jump onto something convenient, but it seems you are going fast to chemo and its not clear if your MO has fully explored other options that could extend the time on anti-estrogen therapies...
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I had xgeva shots for 6 years. One of the side effects of that is jaw problems. I stopped getting the shots in January because of the jaw issues. The deterioration of the jaw has continued and the oral surgeon is very worried it will break if I do not get the bone graft. In the meantime, my oncologist saw the increase in the tumor markers and does not want me to have the surgery until the cancer is under control. I am between a rock and a hard place - cancer versus jaw. My oncologist told me the jaw repair was "major surgery" and he would not want me to have that done until my cancer is under control. Also the surgery cannot be done locally and I would need to travel to Seattle (600 miles) or Salt Lake City (545 miles away). I hope the cancer will go in remission before winter if I need to travel. Driving in the snow is not my idea of fun.
As to the other suggestions for treatment, I am a 7 year survivor and have been treated by this same doctor the whole time and have faith in his decisions. Not exactly sure what he is going to recommend since he needs to review my file before making a final decision but he did say he wanted me to start chemo next week.
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No, He said scans showed progression in the lung pleural area, so no more Ibrance for me. I start Xeloda tomorrow. Bummed
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I think if I only had bone mets he may have keep me on the I/F combo but it is in the chest/lung area so I am starting Xeloda tomorrow. He said my progression wasn’t huge but enough to switch.
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Imagine,
Good luck on xeloda. Did you ask him about doing a blood biopsy? The FDA just approved the F1 blood biopsy test. It would be helpful to see what mutations are going on in order to decide on future treatment.
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Wandering- So sorry you have all of these issues at the same time!!! However, it is possible the increased tumor markers are not due to cancer, so normally you would have new scans to be sure of that before moving to something else? Does not take long to have a new scan if you haven't had that done yet..
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Wandering, Have you seriously been taking Ibrance-Femara alone for seven years?! That is remarkable!!
Also, if you were taking Ibrance with Femara, you could try just adding Faslodex shots and re-checking your blood markers, because if that switch works it'd be just as fast but then easier for you to do your jaw surgery..
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Cure-ious: I had a PET scan about a month ago and no new issues. The tumor marker jump has been working its way up for several months. My oncologist has been keeping an eye on that and was surprised at the increase yesterday. I have been on Ibrance for about 2.5 years and taking Faslodex shots for some time. I don't know what Femara is. I haven't heard back from anyone on the proposed chemo drugs but would be interested to know the side effects and how long it might take to see an improvement in my blood work.
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BevJen,
He said if I had another progression he would order because I actually had the tissue genomic done when I went to UNC Chapel Hill in January and it showed no actionable mutations, No Pikray, no nothing. He said the chance that it had changed from ER+ was slim this soon. Took my 1st dose this am:) Lets hope I get more mileage on this treatment. I asked him did it mean that I had a more aggresive cancer and he said all MBC is agressive or it would not have become Metastatic. He said it is just my cancer that is not responding to the I/F combo..average is 2 years which means some get longer and some get shorter..I hate it but can't change it. My Tumor Markers are so accurate, that is how they found out I was metastatic in the 1st place. Thanks Karen
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BlueGirlRed
Sorry you are dealing with all of this..does your doc do Tumor Markers..are they stable?
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Imagine,
Hope you get a lot of mileage from the new regimen, then. Another thing to discuss with your doc at some point would be immunotherapy.
Bev
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Gotcha, Wandering! You have been doing fantastically!! And if your PET scan was fine but tumor markers are going up, it could be the cancer is starting to move but it could be something else like infections, inflammation, supplements, all kinds of things can make those numbers increase, there are plenty of people on here who had their TMs go up but scans were fine, and usually the MO will not change treatments until the scans pick up something definitive to confirm progression- my MO doesn't even measure tumor markers,she just goes by the scan-
it seems like your jaw problems are more urgent- anyway, very best of luck let us know what happen- now that many of us are on Xgeva for a long time its a huge concern...
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Dehydration - has anyone else noticed a dehydrated feeling more since switch from capsule to tablet? I went to tablet in mid- June. Off/On after that I started noticing a very mild headachy feeling, similar to dehydration. Quite a bit most of mid-July - mid-August, none the last few days. I wish I kept a better track of these things. Tablet form was one change, can't think of anything else in diet. Maybe strain from Covid, wearing masks, avoiding situtations? I usually drink a fair amount of water, making effort to drink throughout day. Started getting smokey here,but I was getting those headaches before that. Again, very mild / background.
I ranted in a recent post, sorry.
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Hello, fellow dancers! I had a PET/CT early this morning and just got a joyous call from my oncology nurse. Since I'm not scheduled to see Dr. Smith until Wednesday she didn't want me to have to wait for the good news.....Every single spot has responded to the new treatment and some have resolved!
I hurried on here to tell you because I know some of you are worried that you've had progression on your Ibrance/AI regimen. So did I. I took a 3 month break and tried Lynparrza which gave me side-effect fits and I progressed. Then I revisited Ibrance, Xgeva and added Faslodex shots.
Cure-ious had been mentioning a pause and then a switch like this for some time and I knew I wanted to try it. [It's good to have a researcher like her backing up your oncology team, I must say! Thank you, Cure-ious!]
So here's what I'm hoping and praying for.....that those of you who are making a switch due to progression will consider it just a break while your Ibrance learns once again to stalk your MBC! The end of next month will mark four years since I started and I may be fatigued but I'm expecting to still be here next year and the next and I expect you will be too! [In case you forgot, my first BC diagnosis was in early 1994 and the first MBC showed up in 2012.]
I'm in the middle of an art piece that has Queen Elizabeth doing the splits on a seesaw as a bunch of Crash Test Dummies spin with her potted plants on a merry-go-round. I think I'll take some Zofran and jump onboard!
Love and a happy week-end to all of you!
PatGMc
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Oh, Pat, that is such wonderful news! I'm so happy for you!
And excellent suggestion about taking a pause and then revisiting. You are the poster child for that!
Also loved the description of your current artwork. Sounds delightful.
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PatGMc, I'm so happy to hear your good news. Congrats!!
Philly & those who recently progressed, I'm praying that you will revisit Ibrance in the future
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Pat,
So good to hear about your good news. Congrats on your good scans!
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Fabulous news PatgMc!!
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Patgmc great news. I can feel the joy in your words. You always bring such hope to us all. Can't wait to see the painting.
Tanya
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Way to go, Pat!! Here's to another 4 years!!
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So happy to hear about your scans Pat! Just wondering how long you were on Ibrance with Faslodex? Did it take a little while for the Faslodex to kick in?
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Cure-ious: Thanks for the encouragement. I feel very depressed and lonely at this time.
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Wandering, I'm sitting here in Memphis saying a prayer that you will get some peace tonight but wish I lived nearby so I could give you a hug. We have all been at that lonely place and it always passes.
Thank you, friends, for your lovely words about the good scan. Wasn't my nurse kind to phone late on a Friday afternoon when you know she was tired and just wanted to go home? She had phoned the doctor to tell him and he was out of town. My appointment with him Wednesday will be the last as he has decided to finish out his career working part time in a small town two hours away. I've chosen a female doctor who was also a friend of the Flying Colors Center but I will sure miss Dr. Smith. I'm thankful he doesn't have to give me bad news on his way out. Don't you know these doctors get tired of passing on so much bad news?!
Elena, I can't remember the exact date I started the Faslodex but I'm thinking I've been on it for five, maybe six months. (I took a detox month with no drugs for a month before that as the Lynparza had kicked my behind.) My oncologist suggested I scan after three months but I wanted to give it a little longer so I just let making that appointment slide. Within three months the discomfort in my sacrum had diminished considerably so I knew it was doing something and am delighted that some of the places in my spine have disappeared. I'm just going to keep expecting things to improve like they did for those years with the Ibrance/Arimidex combo!
I'm also going to look forward to the return of dancers who do an Ibrance-rest and come back! I'm a believer!
Hail to the Queen!
Love from PatGMcPill-Pause
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PatgMc- Good to hear of your good scans. I am happy for ya. My previous MO said once you leave a CDK, you cannot go back. Hence, my previous MO. She also said we could not try another schedule of Ibrance, nothing not approved of by the FDA. I am now on the on 5days/ off 2days schedule with my new MO and will see how my lab numbers (ANC) does with that. I wanted/needed a MO that is willing to try things.
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