Ibrance (Palbociclib)
Comments
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LA894,
Sorry to hear about your progression. I hope your next treatment works well for you for many years.
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LA894, so sorry to hear about your progression. I pray the clinical trial works wonders, or you can find a new treatment that treats you better.
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LA894 Thanks for letting us know. I pray your next treatment will give you a long lasting great outcome.
Tanya
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LA894....wishing good results0
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LA894, actually that's pretty terrific news. There's been more success in curing melanoma than with other cancers in recent years. I have a friend who had many large tumors and brain mets who has had no evidence of any disease for seven+ years. She's been back to school got a Master's degree since that treatment!
My oncologist has told me several of the melanoma drugs will prove to work well on other cancers.
I pray that you do well and expect to hear that you have! God bless you.
Love from PatGMc (one week in on a new treatment - Lynparza - after 3 successful Ibrance years!)
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Pat - I was going to message you... how goes Lynparza? Is the Lynparza Lindy going well for you so far?
I've been lurking... sorry about the progression, LA894. Hopefully you'll get a great new treatment that will give you good QOL.
Congrats to those who had good news with test results. At the present moment, I cannot remember who you are... but, YAY!
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Holly, I'm good with a whole week under my belt.....still have fatigue. Mild nausea but not bad. How are you?
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About to finish cycle 1 of Ibrance on the 11th, so far so good. Having been through a very rough chemo regimen, I was really scared how this was going to go when I started Ibrance, this has been VERY tolerable thus far...I find myself looking at the ceiling waiting to feel something besides hot flashes which I am sure is from the Aromasin, (could it be from the Ibrance too?!) but I have a fan blowing on me while resting in bed or in the recliner and that's just fine, feel otherwise okay. Emotionally its still kinda hard and some days my back is raging but days like today when the pain isn't too bad, its really nice to snuggle under a blanket with the fan blowing on me and listen to some music on spotify or something. 3rd Zometa infusions side effects were better than last 2 times, so I'm happy about that too.
I am having to investigate possible pituitary gland metastasis unfortunately...hormones coming from the pituitary gland ACTH and I cannot remember the name of the other one had been normal and then became elevated. MO is sending me to endocrinologist on 11th and back to see her on the 14th. I had asked her during my appointment on the 2nd before my Zometa infusion if this might be indicating something is there, she said yes and that we'd talk about it after I see endocrinologist....I'm not sure how to take my reaction to this news....I kinda had an indication about this when bone mets were found, this was also seen too at the time...but the priority became getting me ovaries out since they wouldn't chemically shut down and then it was a whole drama trying to get a surgeon and a surgery date etc...I think the rush was to take the foot off the gas and put on the brakes with things, because without chemically shutdown ovaries, I couldnt take an AI...and without that I couldn't start Ibrance...and bone biopsy showed strong ER+ PR+ - 95% a pop so I need to get on that stuff pronto...quite a mess....I thought after surgery and starting on treatment and given some time, maybe things were just "irritated" up there like my lungs were after chemo....but, I remember the look on her face after she had me see endocrinologist the first time after bone mets were found and pituitary numbers changed from normal. When I saw her a few days after I saw him she didn't look happy at all. I had pushed back knowledge of all this to try to get through surgery etc and now I'm looking at this problem in the face again. I'm really scared. Still plugging along with the Ibrance tho hoping it's something else. Just feels like things are happening so quick...I feel like i haven't had much time to breathe since last year.
Sometimes just reading all of your experiences helps me feel not alone, even if I don't feel like posting...
Thank you for listening
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Radagast rabbit that’s a lot to take in very quickly. The ibrance SE’s are minimal which is why we pray it works especially if you ever had the other chemo. Your doctor sounds amazing. My doctor said they hate to give bad news - good we hate to get it too. Take care I hope ibrance is doing it’s job. Enjoy the fan and songs. I have the fan on with a heating pad on my back daily.
Tany
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Sorry, long post coming. I apologize.
Well, I had a CT scan last week after three cycles of Ibrance with faslodex. I picked up the report -- to me, it looked pretty good. My biggest concern was my remaining liver lesions after the largest had been ablated. The report says that the remaining lesions were less visible than my last CT and also than an MRI I had on August 29th.
However, there is a remaining issue about my bones. I have never officially been diagnosed with bone mets, but since May 2018, every scan that I have had has noted loads of arthritis in my hips, spine, toes, hands -- basically everywhere. In scans in May of 2019, there were a few indications that perhaps in my spine at T5, there might either be a sclerotic lesion or else something new. PET scan also noted T5, but said there was no unusual uptake in that area. On the CT scan from last week, the radiologist actually indicated "I'm uncertain whether this represents posttreatment sclerotic changes or worsening bony metastatic disease." He also said that T5 was previously measured at 14 mm and it's now closer to 19 mm. Okay. Then, in the "Impressions" section, he said: "Significant increase in the prominence of bony metastatic disease with multiple new lesions throughout the skeleton visualized." What -- huh? Not sure how he got from point A to point B. What am I missing here?
I get to my appointment today and the NP minces no words -- and for backup, the breast center pharmacist is there. She says -- well, based on last week's CT scan, let's just say that there is progression. We think you should change treatment. So we talk some, I ask why we aren't doing further scanning like a nuclear bone scan or even a PET -- they say, well, you've just been scanned. Then I ask if they can have the radiologist review the slides again -- they say: sure, maybe, we could do that, but then there was no indication that they would. The NP also notes that "it's difficult with bones." All the while I'm thinking -- yes, that's true, so why aren't we doing additional scans?
After I picked myself up off of the floor, they said that I had two options: one is piqray (I have the PIK3 mutation) with faslodex. The other is tecentriq, an immunotherapy, which is a clinical trial and for which I would qualify because I have the PDL-1 mutation. And then they looked at me as if to elicit a decision on the spot. I asked a lot of questions, and asked for information about both and said -- I'm just not sure and I want to think it through. My questioning of everything, including the radiologist report, was NOT taken well by the medical professionals in the room. I'm sorry, it's my life, and I thought this would be a cooperative process in determining treatment.
I am SOOOO upset about this whole thing. First, I didn't get a satisfactory answer about the discrepancies in the actual report. Second, they really sold Ibrance to me when I was first diagnosed Stage 4 in May, even though it was never mentioned on my Foundation One report (which did, in fact, mention Tecentriq and Piqray.) I came home with a bottle of Ibrance planning to continue at least one more month on that until I can sort it all out. Also, maybe I'm crazy, but wouldn't it have been more appropriate to have the actual oncologist in the room to deliver this news and talk it through with me? (Thanks, Nicole, for pointing that out!)
So, folks, what's your reaction? Am I crazy and should I just pick one or the other of these alternative treatments and move on? Thanks for any and all advice.
Bev
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You're not crazy Bev. I would be upset too. I can't believe they wouldn't order a pet. I think you need a second opinion. Ibrance can work a long time and it seems like it did something because your liver lesions are smaller. Why burn through a treatment if you don't need to.
And yes, the MO should have delivered that message and talk through it with you.
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hi BevJen,
Boy that’s a lot of information to digest all at once. I completely applaud you for telling them you need some time to think it over.
I am with you on the questions about having a bone scan and possibly CT scan to help confirm the findings.
I can only speak from experience, but my bone scans have never shown total stability. The last neck MRI I had a few months ago read that there was decreased uptake in center areas of my cervical spine while INCREASED uptake in other vertebra. Super duper confusing!
Meanwhile, the neck MRI I had previous to that one read, “innumerable active bone metastasis.” No Joke!!! Of my cervical spine! Yikes! We DID Follow-up with a nuclear bone scan and the results from that said that my bone scan looked pretty much the same as the previous one. This all led my MO to decide that everything was “not better and not worse.”
All I can say is that this is all quite confusing. I agree with you that it was odd for the NP to relay this news to you, unless it is understood (and you received verbal communication about it) that they would stand in for your MO if your MO was unavailable or out of town. whwnever I have met with the NPs and not my MO, they ALWAYS tell me that the MO has the final say about things. Not that they bow down, but thy are respectful.
Where is your MO? Can you reach out to them with your concerns?
Any thoughts to getting a second opinion? I read I think on Bestbirds guide to MBC that many people, during a progression, receive a second opinion on treatment approach
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I don't understand treatment change decisions either. My lung tumor had shrunk and my bone mets were stable on last CT scan. But nuclear bone scan showed increased uptake in two vertebra and skull. Very mixed results and I was so super disappointed to be taken off Ibrance. I can just imagine how frustrated you must feel having just gone through it myself. At the end of my visit, the MO said ' you did get a response with ibrance, it just was weaker than I'm comfortable with' I'm sorry you are going through this BevJen. I went through progression within a short period of time this year on my first treatment and even a month later I find myself still arguing with my oncologist in my head.
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Bev,
That sounds very confusing and kind of outrageous that the MO would not be in the meeting with you. If it were me, I would get a second opinion and push for the bone scan. In the meantime, I'd keep taking the Ibrance until I had decided on a new treatment. Best wishes for you as you sort all this out.
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Bev, just popped in and saw your post. I'm so sorry to hear of the progression but even more sorry that your medical caregivers seem to have let you down.
I would definitely consider another opinion if you're comfortable with that but I'd like to make a suggestion. Getting one of the immunotherapy drugs is the goal of most people with metastatic cancer right now. Since you have the PDL-1 mutation and these drugs are working for that, why not jump at the chance of getting the Tecentriq and whatever else they're combining with it? This may be all about God's perfect timing.
Please know I'll be praying for you. I hope you'll also be praying hard about this and just go with what you have peace about in the morning. Most trials require that you be off your previous meds for a month so you might want to stop the Ibrance if you know you qualify for the trial.
Love from PatGMc
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bevjen, so sorry that you were not given time with your oncologist to discuss your results. i think you need to see your oncologist or seek a second opinion with another oncologist ,not a np.
i had my latest scan results with my oncologist last night. I am stable after 20 months of Ibrance [75] and faslodex. please, long may i continue dancing.
my oncologist [who has recently become a professor] said that some of her less experienced colleagues change drug regimes too quickly if there is not evidence of immediate improvement on Ibrance. she said she even waits a few months if there is progression before changing regimes.
i hope you get some reassurance from an oncologist and they find the right treatment for you.
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Bev, the thing that really pokes at me about what you described is a pharmacist was there to talk about treatment options along with an NP. Where was the oncologist? I’ve only spoken to the pharmacist after my MO and I have made decisions together, they were never there in the room with me while I’m trying to get information or make decisions. I echo sentiments above on advocating for more scans, a pet or maybe a bone to help guide. Id also want to know why put on Ibrance if foundation one said something different. That’s a lot of info you got thrown at once and you still stood your ground on not making adecision on the spot, that’s my definition of spunk
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Tanya, thank you! I’ll like Ibrance if things stay status quo, easiest thing I’ve taken thus far bar none
will find out on 14th after I see MO for a variety of things if my counts look good to start cycle 2 the week after (Tuesday) or if we need to lower. She did mention possibly going to 100mg based on how my counts come back. She said a lot of patients who’ve done chemo before this close have marrow that’s been through a workout so might not be able to keep up and thus need to lower. We shall see!0 -
BevJen- WOW !!! Sounds like you handled yourself very well in a tough situation with a lot of info thrown at you. I agree with the others that the MO should have been in the conversation, not just the NP. And I agree that bone mets seems very confusing. I have rheumatoid arthritis and my bone scan in the past has been very confusing---uptake everywhere, shoulders, elbows, wrists, hips, knees, and spine. The PET said I had osseous and sclerotic bone mets to spine and pelvis, but didn't say anything about the extremities. And my MO seems to concentrate on the liver met and poo poos the bone situation. So I cannot advise on your bone situation. Try for a PET or a bone scan and see what they show. Maybe someone else will chime in on where to go from here about the bones or post in the Bone Met Thread for more advise. Your statement of "My questioning everything... was not taken well by the medical professionals in the room" really hit home with me. I have been the recipient of the "attitude" also. Put your foot down. You are the patient. Crap on them if their professional feelings were hurt. In this day and age, we the patient should not just blindly say " You are the doctor. I will do what you say without question". I would seek a 2nd opinion if you can. Have another set of eyes look at the scans and advise you.
Please keep us informed.
Makes me angry that we have cancer and are treated this way. We should be able to have a conversation with our doctor, a back and forth conversation. They should really listen to us and talk with us. Not just tell us what to do. And explain the reports and get clarification if there is a discrepancy.
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Update today. Still steaming after yesterday's appointment, but am trying to pull myself together. Sent a very carefully worded note to my actual oncologist titled "Upsetting Appointment." Figured that would get her attention. She wrote back and said that she had "planned" to pop into my appointment, but was occupied with something "on the floor." Okay, I'll give her the benefit of the doubt, although I really don't think she goes "on the floor" (as in direct patient care in the hospital.) I asked her to call me to discuss yesterday's meeting; she said that she'd make time within the next two weeks to talk with me in person if I want. Thank you!!! At least now I can talk to her face to face and find out her thinking on all of this.
Thanks to all of you who responded and pulled me down from the edge. I really wondered if I was going crazy here, or if I just didn't "get" the way the oncology world works these days. After I talk with this oncologist, I still think I may get another opinion, as many of you suggested. Geez. It shouldn't be this hard to get info from an NCI/NCCN center. Big sigh
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Candy and Bevjen, your words really resonate with me today. I stole an idea from Tanya and am using a heating pad on my back while i have the fan blowing on me to ease the hotflashes...and I've been sitting here in my recliner thinking...and soothing bones so i can get some stuff done today.
The pure garbage we cancer patients have to deal with is enough but getting "the attitude" from nurses or doctor while going through this can make you question your sanity and make a process that should be made as easy on us as possible hard to get through. Having and getting CLEAR information is important too, How are you supposed to make decisions if you don't have the information you need and how are we going to feel comfortable making those decisions unless we feel like we are being heard? Seeing a radiologist comment on BevJen's last CT Scan first with: "I'm uncertain whether this represents post treatment sclerotic changes or worsening bony metastatic disease" and then do a 180 and say "Significant increase in the prominence of bony metastatic disease with multiple new lesions throughout the skeleton visualized."....I've got whiplash trying to wrap my head around those completely different statements. I agree second opinion, new scans, or have the current one read by a guy without a split personality.
Let me be clear, I do like my oncologist. She gets me the scans i need, gets me the prescriptions i need, and catches important things..aka possible pituitary mets....BUT I have not ever been able to speak to her for more than 5 minutes except for 1 time when I was her last appointment of the day, my time to get questions answered is limited. As soon as she's done with me she's already knocking across the hall to see the next patient. I echo Candy's feelings. We should be able to have a real dialogue back and forth with our doctor, I mean this is Stage 4 we are talking about...the prospect of where we are is already terrifying...why exacerbate an already tense situation by not listening...really listening.....I've had to go alone to my last couple months worth of appointments due to hubby's work schedule and my memory isn't as sharp as it used to be, I also can tend to not speak up for myself when I should and just say "Okay"...even tho maybe at the time I'm not happy how things or going or I want to, how do they say it...cut a bitch (verbal tirade slang)? Not nice to say, and not nice to think but I do think it sometimes, especially when I feel things are being swept under the rug..."to keep the appointment on time" even tho I waited 20 mins past my appointment time to see my oncologist. I noticed the receptionists in the oncology office change a lot...the ones i really like have stuck around....the ones with "the attitude" end up disappearing quickly...when that happens I feel relief, not only because they are gone but because it validated I wasn't alone in the feeling.
I'm glad your getting a face to face with your MO soon, I think its warranted and I'd be armed to the gill with questions. I myself have a mini small novel prepared for the endocrinologist and my MO. I have very definite ideas and wishes concerning what I am and what I am not willing to do in this Stage 4 setting. I'm hoping these will be respected by them both when i draw a very definitive line. Medical professionals seem to draw them, why can't I?
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I have been having issues with my teeth for over a month. At first the dentist couldn't find anything from X-Ray s and he thought the pain was due to sinus drainage from my allergies. I noticed a small lump in my gums yesterday and went to the dentist again. This time they did a scan and he said I have an infection and may need a root canal. I'm on antibiotics now, and will go back to the dentist next week. My MO cancelled my next xgeva shot and I will also be taking a break from ibrance until my mouth heals. I don't mind the ibrance break at all in fact I'm looking forward to some extra days off.
Has anyone else had this happen? I am concerned about getting osteoporosis of jaw from the root canal. My MO and dentist weren't concerned, but I still want to check myself. I've been looking on the xgeva site but can't find any recommendations on how long to wait after a shot before doing dental work. Does anyone know?
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Radagast Rabbit,
Well, at least you gave me a laugh today as I mull over my situation. I loved your comment about having the scans read at least by someone who doesn't have a split personality. Too funny.
Totally agree with the rest of your comments. I have had a run of issues with oncologists which I described several months ago on BCO -- my last oncologist, who I saw for 16 years at least every 6 months-- you got that -- didn't call me to tell me that my liver biopsy confirmed multiple cancerous lesions on my liver. I found out when it popped up on my patient portal, a week after she had received it. That's when I switched to the current oncologist. I must not be very good at picking doctors!
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Simone funny you posted about your teeth as I am in the midst of a little paranoid freak out over here. The past couple days my upper molars on one side have been aching and today my bottom molar on same side bled like the devil when I brushed and flossed. I am fortunate to have several friends in the dental world so I just texted them and I am going to go in tomorrow or Friday for an X-ray to see what’s going on. I’m freaked out too because of xgeva.
From what I understand, to treat ONJ you’re doing all the right things, antibiotics, keeping your mouth as clean as possible, swishes?
I am waiting to hear back from my friend about making an appt to come in for the X-rays. I know this sensation is abnormal. I don’t want to jump the gun but it’s hard not to be hypervigilant in our situation.
Let’s keep one another posted
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Hi Philly,
I found a thread on xgeva where someone asked the same question I did. Someone posted a link to a doc which has some really good info. Looks like the recommendation is two months if you need a tooth pulled. I downloaded the doc someone posted and plan to show that to my dentist.
https://community.breastcancer.org/forum/8/topics/870698?page=1#idx_7
I have been very carefully with oral hygiene. I brush my teeth 5 times a day. Use a waterpick etc. I had a new bridge put in before starting treatments last January and the issue seems to be with one of the teeth under the bridge. I'm freaking out too.
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Hi all
Doctors don’t like to give bad news. My NP told me this when I first met her but they have both agreed to speak to me about this and any progression or new treatments together. My ONC wife died 3 years ago from BC and I think maybe that’s why he’s a little more compassionate. Cureious usually knows about specifics with treatments and scans. I get an MRI and PET scan every 6 months. It may have been ore often in the past.
Radagas the stage 4 diagnosis makes us advocate viciously for ourselves. We don’t how much time we have so ... second opinion or another test sounds about right.
Tanya
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Radagast- YES YES YES to your post !!!!! I too have posted about having my list of questions ready for the MO appt numbered most important to least , so if I run out of time I get the most important ones answered. And one time I overheard the nurse tell the doctor that they were behind now (as I was leaving the exam room). And I was only in the room with the doc for 15 minutes. Dang it !!!! We are Stage 4 Cancer, for goodness sakes. Not in with an earache. I think our questions/ concerns are pretty dang important !!!!!! Life and death important.
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BevJen,
I’m just reading your situation and progression news. First, let me say I’m sorry. We all fear progression but it makes it more difficult to not have your oncologist by your side reassuring you. I would be upset too. Something failed. She got into oncology to help patients and she wasn’t there to help you.
I’m glad she is making time to see you. I always think about cure-ious. She had minor progression in her bones. She had radiation and thus “saved” the Ibrance and continued on without changing treatments.
I hope you gets some answers and some ideas.
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Bevjen, I should have mentioned one more thing: My oncologist thinks it will be possible to revisit Ibrance after getting another treatment. He's a former cancer researcher and thinks outside the box!
Love from PatGMc
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Hey Pat- Love the cancer researcher- you bet it can be re-sensitized, no different than estrogen-sensitivity that can come back.
My onc came in this week announcing they will be sending someone to my house to draw blood and send it off for Foundation One testing, to see if I'm eligible for Piqray. I don't need to change treatments, but she says it takes some time to get the analysis, so they want to do it now and be prepared.
I said well, what if the test indicates that I'm not a candidate, but later on a bunch of PI3K mutant cells grow up and cause progression, wouldn't a test done at that time give a different answer? She said no, but her answer made no sense to me ...
Conversely, what if it comes back and says I am a candidate for Piqray? Should I jump treatment now, before I get progression? Save the Ibrance for some future combo, don't risk having the cancer get resistant to it? But what if the future cancer is not as sensitive as it is now? Anyway, I told her sure, however I am taking Celecoxib specifically to suppress PI3K mutant cells. Therefore if the test is negative I'm still going to want to do the test again after progression, in case the answer is different. MBC has many treatments, but some of these we really don't want to pass by
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