Ibrance (Palbociclib)
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Thanks Cure-ious-your explanations are always so helpful. I do think a complete cure is getting closer on the horizon. All we need to do is try and stick around so we can be part of it!
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as I've posted in the past, after 3 mos on F/I my scans had mixed results. Shrinkage of breast tumor and of lymph nodes. However, more lung nodules and bone met showed slight progression.
My Onc's nurse just called with biopsy results. I'm still E+ P+. And next week I'll meet my new Onc since the other has retired. I explained to the nurse that according to folks on this board, F/I hasn't had enough time to work and asked if she knew if I'd be taken off of it. She said she thought that was the plan. But I could discuss it all when I meet my New ONC and my nurse pra on 2/4. She said that sometimes, instead of taking patients off a med that's working in some areas but not others they will just add something to the mix. I like that idea. She said to just chill this week and next Mon. all my question will be answered. She said remember you have a vote what your next treatment will be. THe docs will explain the options and then the three of us will all decide.
BOY! This is the best I've felt all month since waiting for results of scan from Jan.8th. Thanks ladies for all your prayers you've pulled me through a very though months. HUGS TO ALL
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snooky,
I don't know if I posted my experience with I/F but it took more than the initial 3 month scanning results to see results. My MO said if it wasn't trial protocol she wouldn't do scans until 4 months in as the 3 month scan is usually a mixed result. Glad you're feeling better about this. GG
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GG27 Yes, You've told me that along with several others on this thread. That's why I think I'm going to push for a couple more months on it. Because if it works, well my gosh, it's a great treatment. Thanks for replying
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Snooky so glad you are in a good groove now. I know it’s been rough.
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Cure-ious, I was on I/L for only 7 cycles when it stopped working for unknown reasons. The primary tumor started growing again extremely fast (it felt like something ready to explode) so MO put me on abraxane to, in his words “quickly shrink the tumor” and then put me on something else, probably Faslodex but he has avoided being specific. He said I would not be on targeted therapy. I just had a scan that shows progression after 5 cycles of abraxane. I’m frustrated that he’s not considering a targeted therapy since it probably wasn’t the Ibrance that failed. Isn’t there a standard order of treatments? I’m concerned about not being able to have a certain treatment la because of what I’m doing now
Luckily I have continued to follow the Ibrance thread and decided to get a second opinion at a cancer center. I appreciate the way you explain things. There has been so much to learn and no one else around me seems to be interested in learning it with me.
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Cure-ious like others I am always so grateful for your research and explanations. FYI when it looked like I had progression to my liver last year (happily a false alarm) my MO recommended a trial of Verenzio and Falsodex. That is consistent with what you posted. You are always so generous with your insights. How are YOU doing? Last I recall I think you mentioned some faint hints of progression that you were managing to stave off?
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Wandering, I think after I/F there are no precise steps for what's next, but as Penny points out Verzenio could still work well for you and Alspelisib may be FDA approved soon- the second opinion is the right way to go and make sure you are comfortable with the answers and the plan!
Penny- No scans till spring!
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Cure-ious, may I join in the applause for you today? Thank you for taking the time and effort to share treatment info with us. You're just wonderful!
Love from PatGMc
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cure ious. That was an interesting explanation. Helps me understand why I am on AA. It has a similar target that may work for ESR1 ladies like me. And that the next line of TX could have even worse SE especially since I'm diabetic. Stuck better two hard places. But I did have a better week. My weight is stable, not losing everyday. I haven't eaten very much but I have eaten. I've had more energy the past few days. And only a few bouts of pain and bad nausea. Maybe I can hold my own on this TX.
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Snooky, Just popping in to say that my first scan (at Sloan-Kettering) wasn't until six cycles into the Ibrance treatment. My oncologist wouldn't even do one before then because she said that was too soon to look for a positive result. By the time I had finished six cycles and had that first PET scan, my bone met was already gone, and the lesion on my spine had healed. Who knows what we would have seen if she had scanned at 3 months - improvement, progression, stability ?
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Wow Ciaci! A miracle drug for you for sure. That's fantastic. Thanks for sharing as it encourages me to want to stay this course longer.
Penny---
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Wandering--- Praying your questions are answered. I sure know what you're going through.
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I am trying to get back to eating well. Sugar is my downfall.....can anyone recommend a nutritional book that helps to eat the right foods when you have cancer.0
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PatG, it's so lovely to see you back on the board. I hadn't posted in quite a while msylef but did keep popping on to see if there was an update. I recalled you were dealing with some rough stuff. I'm glad you are back -- what would we ever do with you and ...
... you Joyner! So glad you are staying with us here. Are the SEs still manageable?
Ciaci that's good advice for Snooky. At my 3 month scan for there was confusion about any impact of the meds. (I think they felt had to scan because it was so hard to get a handle on what was going on with me -- not only de novo but also no primary.)
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Airline I really love the author Rebecca Katz and her book The Cancer Fighting Kitchen.
https://www.amazon.com/Cancer-Fighting-Kitchen-Second-Nourishing-Big-Flavor/dp/0399578714
She also has a website: https://www.rebeccakatz.com/
Tons of lovely healthy recipes and her website also has tons of recipes.
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Snooky - so glad you are in a better place after such a rough month!! I wish you all the best when you meet with your new MO on Monday. I trust you will keep us posted.
Grannax - also good to see that you appear to be stabilizing on AA. I hope that trend continues as you are getting close to your trip!
Cure-ious and PatMcG - Blessing yo you both for your insights and encouragement. Love reading your posts!
Joyner - how is X treating you?
Penny - i love reading your sweet posts. You are such a kind soul!
Love to all,
Lauren
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Thank you Lauren for the well wishes. And yes, I'll be back with results
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Hello to everyone -
Airlinegal - it is not a book and it does not have recipes, but over the past four years I have spent a lot of time reading about the various foods and studies on the web-site (foodforbreastcancer.com) - the site gives some information on which foods one should or should not eat -
Best wishes to all -
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Penny thanks for the feedback (with a little hope on the side)
I spoke with my onc today who was responding to my "freaking out" email yesterday. He to encourage d me not to worry but agreed to rescan in 2 months instead of 3. If there is any growth at that time we will discuss MRI, Bx and treatments. I am bone mets only and after only a year on I/L this is shocking. I will be hoping this scare is a big " nothing burger". Continued luck and prayers to you all
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praying4u - I will be praying for you! Nothing burger would be a good outcome!
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Cure-ious, Thank you so very, very much for just everything you contribute. I am so grateful for your knowledge and explanations. Sometimes my head spins with so much data that’s out there, but you help it to stop.
Anastrozole failed me. I was on it from 10/2016 to 5/2018. I just have to say I feel so much better on Faslodex. I had a lot of joint stiffness and seemed to lose my get up and go on Anastrozole. Also, I am doing a sooooo much better with reduced Verzenio dose (100mg)
I get Zometa monthly....have you heard anything about when the frequency could possibly be decreased? At this time, my MO Is not planning to space it out further...
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Thanks, Snooky. I have my second opinion tomorrow and I’m kind of nervous but it’s at a big cancer center - so different than my doctor’s small office. Fingers crossed for some answers
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Good morning, all!
Lauren and Penny, thanks for checking on me. I'm about to begin my second week on Xeloda (I am on 1500 mg AM and PM with 7 days on and 7 days off, as directed by MSK). My first week was very tolerable, with only fatigue and the beginnings of some digestive/bowel issues as SE during the last two days. No hand and foot issues so far. My onc says that since I am on the shorter schedule recommended by my Sloan Kettering doc, as opposed to the manufacturer's standard 14 days on/7 days off, he doesn't expect me to experience big problems with the hand and foot syndrome. He does expect cumulative SE, however, and warns me to prepare for diarrhea and fatigue.
On an odd and unexpected (and alarming) note, during the 6 weeks I was off treatment entirely following the hypercalcemia in late November and the process of going to MSK for the second opinion on Dec 26th, I began to develop (in early January, I think) a reddish skin lesion near my face just inside my hairline. It was raised, painless, and seemed to be gradually spreading a bit (one initial spot about the width and length of a shelled peanut initially, followed by a couple of smaller similar lesions very close to the original). I saw my dermatologist on January 22nd, and she noted that though it would be extremely unlikely, the lesion could be related to my MBC. She biopsied. I alerted my onc. She called on the 28th to say that it was breast cancer in the form of skin mets. I freaked and saw my onc that afternoon.
He reassured me that the skin mets are not considered a metastasis to the organs (I continue so far to be bone only) but noted that since my cancer has been unmeasurable, this lesion will give us a visual for effectiveness of treatment. During the first week of X, the lesion became noticeably less red (a paler pink), less raised, and seems to have contracted a bit. My onc was delighted that it appears that X may be working. There are no other spots, but he has warned me to be alert to any further development.
This photo is after 7 days of X. I wish that I had photographed the lesion when it was reddest, but I thought it was a "normal" weird skin thing. The bright red "dot" is where the biopsied area (a smaller, spreading lesion) was removed and is healing. The photo makes this redder than it is; it is actually a rather palish pink.
We shall see....
Pat, so glad to hear your voice among us.
Cure-ious, as always, many thanks for all of your wonderful information, explanations, and guidance.
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WOW unexpected way to track your progress on Madame X.
I hope I don't get unexpected news, though. I'm having a brain MRI tomorrow. I don't expect it to be bad but it's still scary to think of. Oh the things we have to do. 😮
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oh jeez Joyner - I’m so glad your onc is good at helping you to look on the bright side. Great news that X seems to be working!
Praying for a good result to your brain MRI, Grannax.
Love to all,
Lauren
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I have read so many comments on Ibrance /Letrozole and am also wondering how long I will be able to remain on this combo until it stops working. Next week I will statrt cycle 41 and will have a plethora of scan the first of March which will be my six month follow up since the last scans were done. Starting to get a little anxious but am remaining confident that all will be good. I am curious to know what type of nutrition regimen that other women follow. Would love to hear from ya'll.
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I found a new foundation with co-pay assistance for BC and they have money right now if anyone is interested. I know this gets old but I'm always thinking someone lurking might want the info.
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Hi all from the frozen landscape of Illinois!!! I have been busy the last few days and need to get caught up on all the posts!! But first, I thought I would report my MO visit from this morning. I am pleased on how it went. My MO started the conversation with she had a conversation with the radiologist concerning my last CT--Jan 2 and all that I posted about the "artifact" seen. Some had posted here that their MO may also read the scans, I guess mine does not, but she did discuss the results with the radiologist that read the CT. They think it is just "artifact", but unsure till next CT to review. She wants to wait the 3 months and rescan then. I feel this is reasonable ( based on what I have read here ). I then said that even if this blip is nothing this time, I will progress at some point in the future. She agreed. I asked what the plan would be then. Of course, it will depend on where progression and fast or slow progression. She said that there are other hormone therapies to use ( as I know from reading this site ). And if the progression is aggressive we can do chemo to knock it down quick. I asked if she would be ok with me going to a larger cancer center--2 hours away--when I progress to get their insight, check for trials, etc. She said, "of course". She said there is a Breast Cancer Conference in San Antonio in February ( I read about it on this site ). She cannot go to the Conference, but there will be an overview of the highlights in St. Louis and she plans on attending that. She said she will be thinking about my case and seeing if there are new therapies/tests that may help me. As I have posted, I live in a smaller community and there are not many of us MBCers here, so it is nice that she is trying to get updated info for me. I asked about F1 testing, and asked if we repeat it at progression. She said no. That the mutations seen on the test already done will not change. My F1 showed possible PARP inhibitors for me. No other recommendations on my F1 report. Ladies, does this sound correct?? Only one F1 test and no repeating it??? Cure-ious- what do you think???
Grannax---This next question is for you. I asked about Y90 since I have liver mets and the blip seen on the CT is a possible new liver lesion. My MO said Y90 can only be used for women with liver only mets. I have bone mets as well, so this treatment would not be for me. Grannax---does this sound correct????
We agreed for me to continue lab tests monthly and MO visits monthly. She said for me not to hesitate if something comes up and I need to see her or talk with her. She said she wanted to do what I felt comfortable with.
All and all a good visit. Ha, good, when we have MBC and the seriousness of the situation. Funny, what we think is "good".
Now to read all your posts and get caught up with you all.
Hugs.
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Excellent Candy, so happy for you
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