Ibrance (Palbociclib)
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I will be thinking of you Airlinegal! Hope you have an easy time of it and can distract yourself effectively until you get results.
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I don’t post here much but wanted any Ibrance/Letrazole users to know that I’m on cycle 45 and stable. I have extensive widespread bone mets. So hang in there!
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Lynnwood: Thanks for the post. Been wondering how long Ibrance has been used for bone mets (which I have also) and how long its been around.
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Wandering, I went on Ibrance in the very beginning of April 2015. My onc said she had her first patients on it starting in February of 2015. She was very enthusiastic about this drug.
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Lynnwood, you are so thoughtful to grace us with this basketful of hope today. Thank you, friend. And congratulations!
PatGMc
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So happy for you lynwood - and excited for the rest of us!
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Wandering, what a fabulous run! May it continue into perpetuity!!
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Thanks for "popping in", Lynnwood! I love success stories!
Starting cycle 20 today, and I see my onc today to get blood work and results from last week's PET scan. It was posted on the portal this morning, so I got to see the report early. No FDG uptake, but an enlarged thyroid gland (my pharmacist husband tells me it's probably from the cold I've been nursing) and the beginnings of a hiatal hernia... great. Well, I'm focusing on the "no uptake" part! Site of the one bone met I had (T11 vertebrae) is clear, as is the left breast area where the primary tumor was (which had been surgically removed during the biopsy at diagnosis), so Yay!!
This is the first time I've had blood work after the week off - my normal routine has always been Day 15. Onc says at this point it doesn't matter much, because my numbers never went low or fluctuated, but I'm curious to see the difference. (We moved up the scan and appointment because she'll be away in two weeks).
Wishing positive results for everyone!!
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Lynwood...Wow! You give all of us much hope with this combo! Thanks for sharing.
Will be there in spirit with all of you having scans etc. Mine should be coming up soon. I am just finishing up my last week of I/L...9th cycle. Will see my onco on Friday.
Hope
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Thanks, Lynnwood. I need to hear your story every once in a while. I just started cycle 33.
Airlinegal, we are so together. I started April, 2016 and my mets are bone, lung, too. And we both had a pleural effusion that went away. I've always noticed our togetherness but never mentioned it before. Scan next week, results the week after. I'm pretty nervous, too, but we will be ok.
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Oh girls, I'm crying as I write this. I think it's an answer to prayer but not quite sure. My three mo Bone scan and my CT scans which I've been writing about for last week.
I just heard about CT today by harassing the nurse. But I"m not sure if this is all good news. After two mos. my ONc wanted to take me off cause of progression to tumor in my breast. She gave me another mo.on Ful/I
So, the bone scan said still only same 4 areas but are increasing. (He mentioned this could be tumor flare but did not think so for a reason I could not understand.
Ct said breast tumor decreasing in size!!!!!!!!!!
Auxiliary node decreasing in size!!!!!!
But there are More nodules in my lungs and then the bone situation.
My Onc hasn't seen these results yet. She needs to check if theres a good safe place for a biopsy.
Oh Please, someone tell me, lol are these good results or bad? All my thanks
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Snooky it looks like a mixed bag. I’m sure your onc will explain it all more thoroughly and there are others on here who may know.
Lynwood 1960 congrats on that long amazing run. Thanks for sharing.
I hope everyone with upcoming scans and tests have great results.
My ONC decided to reduce my Ibrance to 75 today bc tiredness fatigue. I’m praying it’s as effective as it’s been for these last 19 months.
Take care all
Tanya
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Jaycee49....I remember we were close....please keep me posted on your outcome and I will do the same. But Lynwood you give us all hope. Thanks for sharing. Ciaci glad you have had no uptake. Sorry about the hernia. JoynerL you have been in my thoughts and admire you for your fortitude and great courage.0
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Lynwood that is really amazing you’ve had such a long run with Ibrance. Thank you so much for sharing!
Snooky, I’m not sure. I hope it’s just a tumor flare and your MO can explain things better. Hugs
Tanya-I hope the lower dose helps with fatigue.
Good luck to everyone with upcoming scabs
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Snooky;
My October scan didn't comment on my original tumours (lung) but said there were multiple (too many to count) nodules in my lung. I was scared to death. My onc was not happy and went to speak to the head of radiology and they both decided they were lymph nodules....or something like that. I had a scan a few weeks ago (early January) as a follow up and they are all totally gone....including my original ones. I'm not familiar with bone mets but for the lungs yours sound very familiar to me. All the best, and don't lose hope here.
Cathy
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Thank you Seaway, for sharing that with me. Hugs
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Well, I'd posted earlier that I had thought that my three mo scans for Ful/I showed that it was working. Just got that hope dashed. My ONC wants a biopsy to see if the E P HER status of original tumor has changed. The nurse said I'd probably be taken off Ibrance, I said but why? My breast tumor mass has decreased and an lymph node has decreased in size. However I have more spots in my lungs and progression in my bone mets. So they are thinking that IBRANCE worked in first couple of months but then stopped due to my tumor changing it's characteristics. I said I can't stand this stress these last ten days of waiting for scan results and now not understanding them . Can't eat can't sleep. Nurse asked if I'd like to come in and talk with Carla ( Nurse Prac )this Fri. so she can clarify thing for me. So it's more of just waiting to see what's happening. Please ladies, offer up prayers for me. Thank you Sue
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Sue;
It doesn't sound right to me that it is acting in one area and not others. My onc was mad with my October scan results because it appeared then that the original tumour had resolved but I had all these additional ones....too many to count. This is why he double checked the reading and now all of that is resolved. I am wondering about your scan too and wonder if you should ask to have it re-read by whoever runs the department. I hope someone with experience with bone mets comments as I seem to remember some experiencing off things there too. All the best Sue.
Cathy
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I know Seaway, something does seem to be off. I just need to hang on and live in the minute and wait and see what the biopsy reports. Good thing, my Onc is retiring in couple more weeks. So I'll be switched to someone a bit younger. Maybe he'll have more up to date ideas . It's the not knowing, the scans were 8 days ago and I still don't know if it's good or bad. If I'm on Ibrance or if I'm off. But, I can do this, I just need to hang on to God.
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Hi everyone. Just wanted to let you know that I am still there, however very busy throughout Dec (2 kids awaiting x-mas plus company going wild towards year's end). And currently, I am not fine, because I picked up some clostridia. Old story: first a cold, then did not get enough rest (preparation of skiing vacation), then I got a bacterial superinfection, since I was on vacation I used Ciprofloxacin which I still had with me, then the doc (to replenish the AB as it was not enough) said that Amoxicillin was much better so I took that, then the diarrhea started. It looks like I killed all my good germs leaving me with only the crappy stuff - since 9 days! My general practitioner is doing her best, but it just takes time ... and another AB. Not to forget me only eating toast and bananas since days.
I am slightly worried about my Letrozole resorption, but there is not much that can be done about it. Wrt Ibrance, I am currently on off-week (took d21 last thursday), but with low ANC of only 890, I am convinced I will need a second week off. I will call my MO about it tomorrow (and I am sure they will also ask me to postpone my 4-weekly Zometa since I cannot believe they want me and my Clostridia in a whole station full of cancer patients).
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Snooky, you deserve to have clarity, as much as is possible, on scans, etc... I have established myself as an assertive patient with my team - they know I ask lots of questions, that I ask why they recommend one direction versus another, that I won't leave an appointment until I understand, I will pull scans from different dates and compare the results and make inquiries based on that, etc...I do all of this in a polite way of course, by my mind goes crazy wondering what if. So, doctors are service providers, and I encourage everyone to make every request you need to feel that you're getting good service. 10 days is a ridiculous amount of time to have to wait. The lung spots could be due to a cold - have you been sick lately? Why do they think there is progression in the bones - make them give you specifics. If you can, take someone with you to your appointment or record it on your phone so that you have notes or a recording to refer back to and also have someone else there who can say they don't understand. I do this with my treatment decision appointments and it's so helpful, especially if I'm emotional.
It is possible to have two types of breast cancer. I recall there are one or two people living with that on these boards and hope they'll chime in. I think it's fairly rare though. If your doctor hasn't treated many people with MBC and with Ibrance, they may not know it can take at least 4 months to see progress. Some doctors, want to use a chemo to beat back the cancer as much as is possible and then move to Ibrance as a maintenance drug.
Since your doctor is retiring anyway, can you switch oncs now? As you're making incredibly important decisions right now it could make sense to them to have your new onc be part of that conversation.
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thank you Jen, you make some really good points. And I don't think that my Onc knows much about Ibrance since she wanted to switch after two months! Also, she's negative and does not offer hope. Yes, since they've squeezed me in this Fri before the biopsy, I plan on doing just what you've suggested. I have not even seen the scans yet. I only know what the nurse has told me the results are. Appreciate your thoughts and encouragement. Thanks, Sue
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Also Jen, nurse said spots are very small won't even show up on a Pet .. So I don't know if they are active or not.
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hi snooky deep breaths and know this is a process and that the knots of confusion will untangle. It is our job to ask a million questions until we are satisfied and our right to have a voice in our treatment decisions. You have the right and power to take the information they present to you and pick it apart to pieces until you feel like it makes sense.
Nettager - ugh so sorry to hear about your ups and downs. It is crazy how quickly one thing can move to another. A good reminder for me to rest when I’m under the weather (in the past I would’ve not rested so much.) I hope you feel better ASAP!!!
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Snooky- Oh my girl. I totally get the frustration you are feeling. I agree with Jen's post on so many points. How about seeing the new onc now, since that will be the doc you will be seeing from now on. Have them involved in the conversation about changing treatments. Also I have read so many here that say not to rush to change treatments without ample evidence that you need to do it so you don't blow through the meds. The biopsy would shed light on if the cancer is indeed mutating. Seaway commented about it working in one area but not another. This is all so confusing, I think. But hasn't others posted --Grannax--that the meds helped in one area but progressed in another?? So maybe the meds can work that way, some areas are tougher to stop and they progress. So confusing. Also, LovefromPhilly---Yes!!! We are to ask a million questions and pick the information to pieces until we understand it. Snooky- how about a second opinion before changing treatments? I think that is what I will do when I face progression/possible treatment changes. I still haven't heard from my MO office about my CT results ( done Jan 2 and my concerns well posted here ). I guess they are waiting on my Jan 31 appointment to discuss. I totally plan on asking MANY questions that day and not just get poo-pood with my concerns. I am praying for you Snooky. Know that God is in charge and walking beside you through this, and will carry you when you cannot continue on yourself.
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Thank You so much Candy and Love from Philly,
I know that you are right in everything that you say but its awfully nice to have things validated. What gets me is these are professionals. They've studied this, practiced it. Yet how can they be wrong so many times? I know cancer is very complicated. That's why I told the nurse this am that I could not do anything without seeing scan results and talking to ONC. Well, she's always booked way in advance. So the nurse got me in this Fri. to speak with my favorite Nurse Prac. Carla is a god send. She's very good at speaking in a language that I understand. If she thinks do biopsy ( I've read so much about it spreading cancer cells) I'll do it. I'll also ask her if I can be re assigned to a new ONC sooner rather than later. I'm starting to feel more at peace now. Been praying my heart out and God has started to give me peace. And he reminds me I'm not powerless Because HE is not powerless. I'm just going to step back and let him hand the next few days. Your thoughts and responses mean so much to me. I'm going to be ok. Just some more waiting. But I'm ok.My prayers are with you too. HUGS
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Snooky, maybe you should book an appt with the new onc NOW rather than waiting until they are ready, at which time he may be booked out a ways. Also, I totally agree on the second opinion. And, are you getting CD copies of all of your scans? That's something that all of us should do, though MSK still hasn't returned mine, which is making me very nervous. This is three years worth of multiple types of scans.
I have found that when you are in for a scan, you should tell the person who checks you in that you want them to burn a copy of the scan on a CD for you, and you want to take it with you after the scan, if possible. If not, arrange to pick it up the next day. They do not have to have read it first to give you a copy. Then, keep a complete file of your scans.
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Airlinegal, you are very kind to note my fortitude and courage, but neither is warranted. I'm just putting one foot in front of the other and trying to be prepared. I feel better if I've studied and gathered "stuff" per the experience of others on the Xeloda string (appropriate creams, unguents, etc). Also, getting ready keeps my brain occupied.
I was supposed to start the dreaded (perhaps an unwarranted adjective) Xeloda on Friday, after my supposedly last day of radiation tomorrow. But, that last PET this month showed "mild progression" and two small new lytic lesions in my spine, and onc wants radiation onc to decide whether she wants to zap those two spots at T6 and T10 with radiation. Onc doesn't want me to start Xeloda until after radiation, so yet again, I may be in a holding pattern while they sort this out. If holding, then they have to do the CT, measure, tattoo, etc, all of which takes more days. Shoot. I've been off treatment since November 28th (except for monthly Xgeva).
I must say that I really like the techs in the radiation center. We have very pleasant, if brief, chats every morning!
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Lynn I haven't even heard of CD copies. In fact, I've never seen an actual scan. At my appts with Onc she never shows me anything on her computer about the scan. All I've ever had was the radiologists reading of my scans which they download into my patient portal. Yes, all whom have voiced see new Onc first are correct. Exactly what I am going to do. When I see my favorite Nurse Prac. this Fri. I'm going to ask her to get my apt lined up. You know what? I don't even know who my new Onc is to be. No one has told me. I'm sitting here right now, writing down my list of questions and concerns for this Fri. appt. One thing though, I totally think, by what I've read on this thread, that three months is too early to be taking me off Ibrance
This a.m. when I was speaking with nurse on the phone, she told me they'd be taking me off Ibrance..Also, when I mentioned rads for the 4 bone areas, she said No you can't radiate them.. How would she know this information? And this if before biopsy that is suppose to tell me next direction! Thanks Lynn. HUGS
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Snooky, at least here, and at all four facilities (3 hospitals and one radiologist's office) where I've had scans, they have told me that I have the "right" to request a burned CD disk of the scan, and the first copy is at no charge. Of course, I don't try to look at it, as the CD needs to be read on some sort of special equipment. But, I think that you should have copies of every scan if you can get them, so that you can take them along on appointments for comparison, if necessary, at future scans. If you can't go back and get past ones, don't stress, but do start getting them going forward.
I have found through experience that the HCA facilities don't share records with the Bon Secours facilities. HCA can pull up all of their "own" scans but not those of others. Thus, if you have them on CDs, you can take them along with you..... and guard them carefully (speaking from experience, since MSK still hasn't returned my cache of scans, and I am ON IT). Janet, I may yet need you to step in here.....:)
I fully realize that I am sounding quite didactic. Just ask my DH....
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