Ibrance (Palbociclib)
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LovefromPhilly-- Gotta love it. I am a concrete person and I want concrete answers. Drives me crazy if the docs don't know if the mets are worsening or not. I have RA and disc degeneration in my lower back ( from my line of work for 25 years lifting heavy loads ). The CT will show sclerotic lesions in spine, the PET showed osseous lesion in cervical spine and uptake in shoulders (cancer?) and the bone scan shows no "definite evidence of metastasis" but uptake everywhere-shoulders, spine, clavicles, even wrists and ankles. Good grief. Either way my skeletal system is a mess. And boy do I feel it!!!! But when the docs cannot tell us what areas are cancer or not it does concern me. I even thought for a time do I even have cancer!! But the liver biopsy was definitive for mets. And my MO said Yes I have liver AND bone mets. Physiatrist??? We don't have that in our rural town.
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just a quick jump in to say that some of the comments in the past 24 hours have really had me giggling!!!
Wiggle the sore tushies
Jaycee is done quoting herself
Many of us being confused
😂😂😂😂😂😂😂😂
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Lauren, Pat, Lynn and Gailmary, thanks for the info on Faslodex shots. My MO is not talking about changing meds just yet.
I still have a real problem with THAT BIG of a coincidence as the two meds failing at once. I would need data, something to prove that hypothesis. Like W. Edwards Deming said, "In God we trust. All others must bring data."
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So that's the problem, Joyner, Ibrance is not enough to stop the cancer growth on its own, but doubles the effectiveness of Femara/Faslodex. When the Femara fails, the Ibrance alone won't stop the cells from growing, but it could still be inhibiting the CDK4,6 kinase. Unless you see in a new biopsy sequencing that the cancer has acquired a mutation that would make it insensitive to CDK4,6 inhibitors, you don't know if the cells remain sensitive to Ibrance or not. The cancer could still respond to Abemaciclib monotherapy, for example, or to a Faslodex-Ibrance combo. If just the Ibrance failed and the femara was still working, you would not have progression.. So by definitiion, progression means femara stopped working, and the only question is whether it also got a mutation that causes resistance to Ibrance- those of us with bone mets only don't get sequencing, so we have no data on which to decide whether or not to include it in subsequent treatments..
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I was on Ibrance/Faslodex for 23 months when it failed in December. I was never on Femara, for whatever reason. Re the Foundation One report, when my primary onc briefly reviewed it with me, he noted that per the results, Ibrance should have been an option for me. Very confusing.
MSK onc initially in December suggested either Xeloda, AA, or Verzenio, but after the skin met result was triple negative, she said that Verzenio was no longer an option. They are re-doing that biopsy, in the hope that it was wrong (since I was ER+ as recently as December is a bone biopsy, but that is likely to be a faint hope.
Airline, thanks for checking on me and the Xeloda. I just completed my fourth cycle "on": 1500mg 2 times/da, 7 days on and 7 days off. No real SE except that yesterday, my first day "off", my feet started to burn. They look fine, and I've been doing the creams routine, but they are sore, as though I had walked a very long way. Otherwise, I feel pretty normal. When something fails unexpectedly (Ibrance/Faslodex, and I fully had intended to set the new world record on that combo), I find that you start looking over your shoulder and being paranoid a lot more!
Looking forward to boat weather!!!!
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JoynerL- I am wondering if cross trainer tennis shoes or tennis shoes with memory foam would be more comfortable for you? I would go into a running shoe store and check that out. Due to whatever, (neuropathy?) I started feeling like on long walks I was walking on my bones. I got some cross trainers (very cushy) and they were great for long walks. I recently got some tennis shoes that are woven fabric on the top and memory foam shoe bed. wow! Nice.
Cure-ious- makes perfect sense. hoping that the new oral SERDS can work better or the SERD/SERM (I think it is) category will be the answer.
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CNN article about FDA approval of first immunotherapy for BC (triple negative)
The title of the article neglects to mention that this combo was approved for triple negative BC (so not for us...yet). It is well-written and explains some things in very understandable terms. I learned a lot from it.
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Daniel,
My wife went to a walk in clinic about her rash / infection on her face. Gentamicin is no longer available in Canada. The Doc instead prescribed to her metrogel 1%, being metronidazole gel, another topical antibiotic. It made a massive improvement in her condition after only one afternoon. This morning she is still itchy, but only 25% of the redness as previously. Thanks for the suggestion of a topical antibiotic. She actually slept well last night and is feeling so much better today.
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As Jaycee noted, I-O (immunotherapy) was just approved for TNBC in combo with chemo yesterday- what about ER-positive cancers?
A cogent analysis was just posted on OncLive, sounds like nothing imminent but lots of irons in the fire:
https://www.onclive.com/conference-coverage/mbcc-2...
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Repeating myself to some ..I have MBC to lungs..since last March..and on PET about year ago when this happened.had nodule on left breast That was then removed...Dr mentioned different chemo if nodes were involved.They were not.TY God.but for now on IBRANCE AND LETROZOLE.Does the article jaycee49.ty.posted Still mean I ok where I am..My ONC so on top of progress but need to be informed by my BCO friends also..ty😉
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Lakewoman, I am not an expert at all, but I will chime in if it helps. I do have node involvement and I am on Ibrance / Letrozole and am doing well after almost 3 years. I think the only way you really know if you are ok is to look at your own results. We are all so different. If you are doing well on I/L, then I say keep at it. I don't understand the nuances of the article, but I do understand that if I am doing ok where I am, then I should stay there for now because it is working for me. If there is something better offered now, then I want it knowing my onc will want it too enough to discuss it with me. I guess maybe that takes an amount of trust in a shaky scaffolding. Do I look at next steps? Yes, but things are changing rapidly in the research world so I have decided to discuss the next step when that day comes. I am not the person who flies out seeking the magic cure stressing my family in the meantime. That is just me. My mantra through this whole thing has been "Celebrate the Joy." I look for the joy in small things everyday...even in the midst of pain.That keeps me going. Chris
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Great advice Chris! The article that’s curious posted is just noting that there is action around researching immunotherapy for hormone positive patients like us, so that may be an option down the road. Just more reason to have hope!
Question - has anyone heard from Leapfrog? I miss her posts.
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Chris, what a wonderful description, "trust in a shaky scaffolding". That's exactly what we're all doing, putting trust in understandably inconclusive guidance. The facts, for the most part, simply don't exist and are being developed daily. But, each of us is different and has a different set of circumstances. Some of us read and research (and understand to one degree or another) and some don't, but we're all trusting, to a greater or lesser degree, in what our oncs tell us is best and then proceeding (whether as directed or not, Janet
....). I don't know whether I've said this before or just thought it to myself, so forgive me if I'm repeating myself: I finally realized that the oncs don't KNOW what's going on (except in certain cases). They are making the best guesses they can, based on experience, reading, and research. I believe that it is incumbent on each of us to pick the best guessers we can and then look out for our own interests in whatever way we think is best.My wonderful onc told me recently, upon a question from me, that I might "have months or many years" to live, depending entirely on what this MBC decides to do next. Unsettling, but there it is.
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Joyner - for sure these Oncs are doing their best to consume all available info and make their best guess. What helps me is when my MO clearly articulates the rationale for his recommendations. I also now have a second MO (part of the same network but allows me to get my Faslodex and Herceptin 1 mile from home rather then going downtown). The plan is for me to meet with him every 3 months about 1 week after I see my primary MO. I am excited about this new structure as it gives me week to think about questions I didn't ask and get a 2nd opinion on a regular schedule.
And if I get a vote, Joyner, I believe you will have many many years!
Love to all,
Lauren
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Lauren, that sounds like a wonderful plan! Well done!
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Lakewoman, the article I posted was about newly approved immunotherapy for triple negative BC. If you are on I/L, you are not triple negative.
Chris, that is kind of my approach but I could never express it so eloquently.
Joyner, that is all true but what bothers me is that doctors want us to THINK they do know stuff. How often does a doctor say, "I don't know?" It has happened to me a few times and I always have more respect for that doctor when it happens. I guess some people want to think their doctors know everything.
That's a nice setup, Lauren. I'm jealous.
How nice is it to have Joyner here twice in one morning?
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HI All,
I started my 1st cycle of Ibrance/Letrozole over the weekend - what a way to start a new week. yeah fun. I don't post much, but I do read all the comments and have learned a lot. This message board has been very helpful to me.
Thanks to all that post.
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Hello! New to this thread and Stage IV. Starting Ibrance on Wednesday (in conjunction with Lupron, Faslodex, and Xgeva-- for Tamoxifen-resistant recurrence in the ribs)-- any advice for taking the pills in ways that minimize side effects? AM vs PM? Types of food to take it with, etc? And any patterns to the potential side effects that might be especially helpful? (i.e. don't go to Disneyland on day 3!).
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Jennyunderthesun- Welcome. You will learn a lot from this wonderful group of women. I have been on Ibrance/Letrozole/Lupron/Xgeva for a little over a year. I take my meds first thing in the morning with breakfast. That is the easiest for me. You need to take Ibrance with food, especially with some dietary fat, for it to absorb well. I usually have cold cereal and muffin with a glass of milk. I take the meds WITH the food and drink. Some have reported on here if they don't drink enough with the Ibrance pill they will belch a puff of smoke. Haha. Side effects that I have had--- fatigue is the biggest issue. I don't remember when exactly that it started. My MO says she expects fatigue with 1 of the meds much less with all 4. She says to rest when I need. I have also had dryer skin and hair, hair thinning, joint and muscle pain, and HOT flashes. Which meds causes which side effect? Probably a little of all. No estrogen swirling around with the meds use causes most of this. Some have reported on here mouth sores, nausea, diarrhea, etc with Ibrance use. I have not had those. We all are different and the meds react differently for all. We call it the Ibrance Dance--- managing the side effects. Your MO should order frequent lab tests at first to watch your white count--esp the absolute neutrophil count (ANC). The Ibrance can/will lower the counts and the doc may have to adjust the dosage. I started at 125mg and had to go down to 75mg. Lots of info to absorb, but keep reading here. You will learn A LOT. Also there is a Bone Mets Thread you can join since your mets is in the bone/ribs. Feel free to ask ANYTHING here---we are here to help each other!!!!
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Welcome Me and Jenny although we are sad you have to be here. Candy said it well. Keep reading and asking questions. We get it!
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Well said IntoLight on your earlier post. I just live each day....pretty much like I have always done. Appreciate those here who learn and research all they can to share with us. You might say I like to stick my head in the sand, but that is how I cope. I know it's there, but I continue on with life.....SE and all....scaniety too.0
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Jaycee ty for your help but yes I do have TNBC...and MBC .....
First MBC to lungs ER + Her 2 - Nodules found on lungs on routine chest xray my rt breast removed 10 yrs ago.. that was proven it was metastatic by lung biopsy March 2018 .I was started on I/L in April.
On PET scan in April.nodule was found in what I called my left over breast..😊 biopsy showed it was TNBC😣..Mastectomy done May 1 2018.My Oncologist said I would stay on I/L if nodes were clean.. which they were.Otherwise she said I would have to be on entirely different protocol..chemo infusion..for TNBC and ??? for my MBC.though.staying on I/L was mentioned..but since I have no node involvement on TNBC and no signs of progression..all is okay. My Sept PET scan showed major improvement in lungs..and trust me there was a lot and believe or not nothing showed a year before on chest xray for pnemonia..so mets was fast.I remember after second diagnosis going on TNBC sight and they sort of implied, kindly ,since I on I\L I belonged here..But I need to know about both..as that is what I have.!TY for listening.
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Pat, I also had a weird reaction to compazine, I never heard anyone else say they did but it did cause me some hallucinations! I wish someone warned me of that as a potential side effect
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Welcome, Me2018. Glad to have you here.
Jenny, I take Ibrance with dinner in the evening. I eat whatever I want so I can't advise on food choices. I had diarrhea on 125 mg for two cycles so switched to 75 mg. No real SE since then. I have had a few weird things happening the last few months but nothing I can really pin down. Disneyland on day 3? Go for it.
Lakewoman, I suspect they are treating the ER+ mets with the I/L. It would do nothing for triple negative. Maybe someone could help me out here.
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Jaycee, I also take Ibrance with dinner as I am inconsistent with breakfast. I have occasional diarrhea but nothing serious. It is easily handled with Imodium. I have been on 125 the whole time. I have enough energy to do what I need to do. I have been to Disneyland twice since my dx although I ride a scooter. It helps me keep up with the grandkids!
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TY ,yes they are treating the METS with I/L..and no rx needed from what I understand re TN..it is being watched ever so closely.Scans ..prob another PET soon..Physical palpation by dr..q month and of course blood work and tumor marker ..Open to any and all input .Does anyone know of anyone with both MBC and TN?? ty again jaycee😀
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https://breastcancer-news.com/2017/01/20/ibrance-s...
this is what my onc believes as things stand for me right now..
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Wow, Lakewoman, that is really interesting. Your lucky your MO stays on top of the research. There is so much to keep track of. I asked my MO once, when letrozole SE were really bothering me, if I could just take the Ibrance alone. She said no because it has never been tested in a trial alone. The trials seem to dictate how a drug can be used whether that is valid or not. I know, for instance, that Lauren is Her2+ (right, Lauren?) and Ibrance is only supposed to be for Her2-. I'd like for more doctors (like yours does) to think outside the box.
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Happy Monday and Welcome, Me and Jenny! Lots of good advice on this thread!
What I love about Ibrance is how the side effects dance in and out of your life pretty quickly. You might have something in the 3rd cycle that you've never seen before and may never see again.Your hormone therapy will also give you a kick in the behind and then ease up.
[WTMI: If you complain too much about constipation and poopin' rocks, you will have a bout of diarrhea that will make you wish for rocks....Just sayin' to be careful what you wish for!]
For me fatigue, mild nausea and indigestion seem to be the gifts that keep on giving, though not every day. I'm retired so I've limited my activities but I've learned that when you're choosing to live hopefully, joy comes. When you look for things to laugh about, joy comes. When you don't let your mind leap ahead to all the hard days that might come and just stick to the days that do, joy comes. When you do have one of those hard days, God will see that joy comes.
I think back to my first diagnosis when I expected to die in 2 months......It has been a looooong 2 months.......25 years of months!! I have had BC off and on during those years with MBC showing up in 2012. With each occurrence there were new drugs on the market that were not available the time before.
Ibrance/Arimidex and XGeva have been working well for me since October 2, 1016. Somewhere today a white-coated researcher is mixing up the next thing for me and you in case we need it. In the meantime, there's the joy. (I have extra today and I'm sending it your way!)
Love from PatGMc Z
(One extra bit of advice, find an oncologist who also chooses joy and who always speaks hopefully. You don't need a doctor who doesn't believe in his medicine!)
(Re: Ibrance dose.....My onc starts everyone on 100mg. I got pretty close to NED on that and decided to reduce to 75mg. Had no progression on that until I decided to stop the 3 weeks on, 1 off cycle and go to 2 weeks on, 2 off. I had "petite progression" on that so now I'm back to 100mg, 3 weeks on, 1 off and I'm pretty stable. Why did I play with the dosage when it was working so well? Because I'm always going to be one who is trying to get off treatment. I believe that is possible because I have friends with MBC who have been in remission for decades. If they can do it, we can do it!)
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WOoooooh lots of action here today! Welcome to our newbies, very sorry you are here and understand you may well be very anxious - together we are supporting each other. Weirdly at least 3 of these chats today are relevant for me:
On cycle 9 of Ibrance / Letrozole ... bloods terrible all the way through apart from once, so rarely make it on schedule. On 75mg Ibrance now. Actually feel fine most of the time, got the runs occasionally, but manageable. Hands can be sore and get very tired, but pacing myself. I’ve learned to relax more, not stress the small stuff and value my real friends... the ones who can cope..,and it turns out there are quite a few of them luckily for me!
Working full time in a stressful but rewarding role, but they know the situation and I do not need to be in the office at stupid o’clock... I do that bit at home! About to retire at 55 in 6 months and enjoy what life is to come.
Agree MOs are working in a world of informed academic intervention ( guesswork). We rely on their experience and expertise and we need them on our side. Mine shrugs often, but I’d far rather that, when we both smile about it and know she’s doing her very best for me and all her patients, than her giving me stats just to make herself sound knowledgeable!
We also have support here in central Scotland for complementary therapies. Massage, aromatherapy, podiatry and reiki.... all free to those who apply to cancer support Scotland. Brilliant service which I used to Poo Poo as being the fluffy stuff which would not help the cancer stuff. How wrong I was!
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