Ibrance (Palbociclib)
Comments
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Candy, I think you did the right thing too. I think thIs thread in particular has been very informative to those of us here. Thanks to all for sharing your knowledge and experiences. The fact that the Neupogen was not something others had been given with Ibrance (or did I forget someone?) is a good reason to want to hear more from your MO first. Maybe it’s a new thing, or maybe it would make sense if she explained it to you. Or maybe when you discuss it, she’ll just backtrack and tell you to wait an extra week. My thought is your MO will realize you expect to be involved in your treatment, if she hasn’t already. Lousy timing for you that it’s the weekend again, with more waiting. Sending you calming thoughts and the knowledge that there are many of us here who care. 🌻🌻🌻🌻🌻🌻🌻🌻
(I’ve been below 1 for ANC quite a few times in the last year, and even at .95 I’m told to wait an extra week and retest before starting the next cycle. That’s all I’ve experienced.)
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Go Candy! Well-done standing up for yourself. You have not done anything wrong. Do not believe that good girls do not ask questions, make waves, etc. Throw that idea away. Your doctor did not get through medical school by being passive, and ought to respect another woman who has an inquiring mind. As for the nurse, well some nurses enjoy their power too much. Be polite but insist on speaking with your oncologist when it comes to questions about your treatment. You don't even know at this point what advice is coming from a nurse overstepping her role vs. from the actual doctor. Don't be apologetic; it invites bullying. Calmly assume you are acting on your rights as a patient.
Maybe this article will give you some ammunition; that is, something scientific to cite that reinforces what you are saying. The article itself has many footnotes referring to papers in oncology journals.
https://www.cancernetwork.com/breast-cancer/management-neutropenic-toxicity-cdk46-inhibitors
My oncologist (at an NCCN center) told me that they really don't see that many infections with Ibrance despite the low neutrophil counts. This article says as much:
“Despite the higher rates of grade > 3 neutropenia reported in the trials evaluating CDK4/6 inhibitors, the incidence of febrile neutropenia was relatively low (palbociclib, 1.8%; ribociclib, 1%; abemaciclib, < 1%), suggesting CDK4/6 inhibitor–induced neutropenia rarely leads to infection.“
In the section on what to do about low neutrophils, it does not mention using Neupogen or Zarxio at all. Rather, it outlines taking a longer break, then reducing the dose if the problem persisted at an unacceptable level:
“No dose adjustments are required for grade < 2 neutropenia (absolute neutrophil count [ANC], 1.0 × 109 /L [lower limit of normal]). Grade 3 neutropenia (ANC range, 0.5–1.0 × 109 /L) requires treatment interruption until neutrophil recovery is < grade 2, with resumption at the same dose level.“
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candy- I also agree. I had to take an extra week off frequently - my MO used .9 as the cut off. My understanding was that the neutrophils are not killed, they are paused and will respond if stimulated by an infection I asked all sorts of people if I was “immunocompromised “ while on Ibrance and most people squirmed and said possibly
I also want only to talk to my MO about important questions - otherwise I am “playing telephone” with the RN or the PharmD who may not really understand my concern or even transmit my concern to my MO- just answer it themselves.
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Exactly, Nkb. These questions and discussions are too important for the game of telephone or for someone who is not a fully qualified oncologist to attempt to address.
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thanks BevJen. So comforting to know. Feeling calmer now. This forum is so helpful. Candy-Simone is right on. You have every right to speak directly to your MO. The unfortunate piece is they are less available tha the others. Just continue to focus on what you need and move forward. Truth is, that now more than ever-especially in medicine, The squeaky wheel gets the grease. Regardless the waiting sucks. Hang in there
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Candy,
You did the right thing, decisions should be made with your doctor. My oncologist says you take an extra week off rather than intervene, unless you are suffering lots of infections. ( She also knows I check in here and so can discuss my options with some understanding.)
For all the time I have been on Ibrance 75g, my numbers rarely get above .9 but I continue with the next course if I am 'well'.
Ibrance slows the production of white cells, hence your low numbers. If you have an extra week without Ibrance your body has the chance to go back to more 'normal' levels of production. Where as IV chemo kills the cells the that produce white cells, hence the need for some people to have some medical support if their levels drop too low and why you are still at risk from infection for a long period after chemo has finished, until cell production gets back to usual. (I have no scientific knowledge, but this is my understanding, anyone, please feel free to correct me if I have got this wrong.)
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What would I do without you all. Thank you Thank you.
Thank you Shetland for the link. I am going to print it off, plus other articles I have found concerning recommended way to handle neutropenia from Ibrance use. I do not see any mention of Neupogen-type meds being recommended. I want to give them to the nursing staff at the office. Show I am not crazy or being a "problem patient".
I also want to hear my MO's thoughts. Maybe she is concerned that I always run 900-1000 after 1 week off Ibrance and she just wanted to give a dose of Neupogen to kick my marrow into producing more white cells to give me a boost. If it wouldn't hurt, and maybe help for a while, then ok. But I need to know her "why" for ordering the Neupogen. And the "why now" when I have been on Ibrance for 2 1/2 years and been low all along with a couple of times 800 or even below and never took Neupogen before. Why now? And what about going forward? Next month, or the next? Neupogen again sometime?
Too many questions to blindly take the treatment, just because the doctor ordered it.
So this is MY plan.... I was off Ibrance the usual 7 days. Got the blood test. ANC 800 (0.8). The correct way to handle that ANC would be to hold 1 more week. But I started back up for 3 days per office orders. Then stopped again per office orders. (Start and stop due to miscommunications with office.) So.... how about recheck ANC this Wednesday June 3 (doc in office Mon, Tues, Wed and off Thurs and Fri). That would be only 3 doses in a 12 day period and 0 doses in 5 consecutive days. See what the ANC is on Wednesday, run past MO while she is on duty, and restart cycle Thurs if ANC 900-1000 as it usually is. But this is MY plan. Makes sense to me. I have to get the doctor to agree to this plan.
I still want to know how all you smart, wonderful women communicate with your MO's. Cure-ious, for example, does a lot of research. And you all have your plans/ideas for next treatments, etc. But when you go to your MO appts, do you tell the doctor what you want to do/try? Or does your MO's call the shots?
I feel like in my area (rural America) the patient is supposed to say "Yes doctor, whatever you say". The nurses even say "Well that is the doctors orders". I am bucking the way the system works and has always worked. Good way to make enemies, in my opinion. And can I afford to do that when I depend on the nurses and doctor to keep me alive.
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Candy, you know me. You know that I call the shots. And I have never been kicked out of a doctor's office. Most of my doctors know me, too, but I think, in general, doctors are getting used to patients having more info of their own. You need to quit worrying about what your providers think of you. It doesn't matter what they think of you. They should not be judging your personality. That's not their job. When you cower before them, they will take advantage of that and bully you more. They miss the old days when they could bully all of their patients. Those days are gone. Case in point: Trump taking a drug no medical professional recommended or approved of. He talked his personal doctor into writing the rx. People do that all the time thus the ads on TV for drugs. They are not advertising to doctors. They are advertising to patients. They know that if a patient mentions a drug, a doctor will most likely prescribe it. Medicine has changed. Even in rural Illinois. It's time to put on your big girl panties and stick up for yourself. Which you already did and I commend that. Just don't back down now.
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Candy, I have a notebook and discuss my questions with my MO. I have 20 minutes, so I only talk about the important things first.
I always thank my MO for being a part of MY team and keeping me alive. At the end of our conversations, I trust her medical expertise to guide me. It is called respect and it should flow both ways.
For example, if I find an interesting trial..we talk about it. But I usually reserve those questions for last.
Please if you don't have that kind of repoire with your MO, ask around for recommendations for a new MO. You have incurable cancer, it is your life and you should never apologize for representing yourself.
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Candy678 - "Well-behaved women seldom make history." Keep asking questions. Digital Hug. I've been fortunate in that almost all of the DRs I've seen have been open to questions and try to answer them. 7 years ago a surgeon was brusque with me, rather rude. I guess I gave his nurse an earful, because he apologized to me. 4 years ago when the oncologist I have now wanted to add a 3rd drug to the chemo, I asked about the drug. She said it would be more aggressive, but she thought I was young (58) enough and healthy enough to tolerate it. I asked more questions and she told me that about 10% of women start experiencing heart problems, which they monitor, and discontine if detected. But that sounded too late, so I declined the drug, and she accepted my decision.
Jack512 - Food and Ibrance might be a moot point, but still a very good question. The tablet form does not require food like the capsules. But more information should be easily provided by Pfeizer and your oncologist. Digging in the Pfeizer literature, food and fat content made a huge difference in how well the Ibrance Capsule form was aborbed. Fasting vs 1000 calories with high fat, absorption increased by 30% !! No Details on if that was food throughout the day, or immediately with the capsule. I wonder what was changed so that food not required. Absorption/how it dissolves etc seems reall important. All I've heard is that the tablet stinks and tastes bad. I start tablets end of June and intend to talk to a pfiezer pharmacist about what changed, even if the active ingredient did not.
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Candy,
I agree with what everyone says about taking a more assertive (not aggressive) approach with your MO and her staff.
You asked what people do. I'm like SandiBeach. I keep a notebook. If something comes up during my month between appointments that doesn't need an immediate answer, I write it down. If I read about a trial or a unique approach to treatment, I write it down. I have actually taken to emailing my MO (not all the time so as not to annoy her) if there's something that I think is especially important to point out to her. And I have to say, I think our relationship has improved somewhat. She is becoming more receptive to what I talk to her about, and so I think that's a good thing.
I like your Ibrance plan.
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Candy, virtual hug to you and I am proud of you! My oncologist and I are a "new relationship" . I was assigned to her last November. I am generally a good advocate (having a kid with autism who is 21 now I have had practice) BUT this stage IV is new territory for me and I also don't want to annoy my doc. I keep a notebook too with notes from discussions on here (where I learn about things such as the Foundation One test that I haven't had). Last time I told my oncologist that I am really thankful she is my doctor because she is so smart and has spent many years doing research on breast cancer as well as treating patients . However, I have these questions.....
I am stage IV because my NCI rated cancer center patted me on the head and told me I no longer needed to see an oncologist 4 years ago. I was in good hands with the "cancer wellness clinic" as my risk of recurrence was so low. I accepted that but should have pushed. So I will push now.
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Thank you ladies. I too keep notes of questions between visits--not a notebook per se, but a list of issues/questions on a piece of paper. Then I prioritize them prior to the appt. My appts generally are 10 minutes. Some less (5) some more (15), but never more than that. And I want to get the most important issues addressed.
This just seemed to snowball this time. Had good appt Tuesday morning. Then labs Tues afternoon. Call from nurse Wednesday late afternoon--- I think MO gone already. And BAM. Treatment plan with Neupogen I didn't see coming. No prior discussion. Then the nurse with the "don't question the doctor" attitude. "We give this all the time to boost white cells" "If you want to hear it from the doctor versus the nurses, then talk to the doctor Monday"-- like I was saying the nurses didn't know their job.
I have found 3 articles so far-- 1 from "Breast Cancer Research and Treatment", 1 from "Breast Cancer Oncology Journal", and 1 from "ajmc.com". I printed them and highlighted the sentences that speak of treatment of neutropenia in CDK 4/6 inhibitors without using granulocyte colony stimulating factors (Neupogen, Zarxio, etc). I wish I could just drop these at the office for the nurses to read. Shows I have knowledge of what I am saying--- and not from Dr. Google !!!
How do you all locate research articles from reputable sites?? JAMA or such?
Jaycee- Love that attitude !!!!!
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BevJen— I do hope my reply to your post yesterday afternoon didn't seem annoyingly pollyannish. If so I apologize! I was just trying to provide some support since I've had many similar experiences with bone scans and have found the interpretations often maddeningly frightening— even sometimes when the news isn't so bad. Sending more good thought your way.
Hugs, Penny
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Penny,
No, I was not offended at all. I appreciated your take on the scan stuff -- truly. I was totally freaked out by the specificity of the nuclear bone scan versus the CTs I've been getting -- I haven't had a PET since October of 2018 or a nuclear bone scan since May 2019. My CTs don't specifically say much about where mets are located -- I'm sure it has to do with the specificity of the scan.
To complicate my scan story, I had all of my scans in 2018 and some of my scans in 2019 not at the main cancer center. Now I am trying to get them all scheduled at the main cancer center/hospital. I discovered that when I do them there, there are always two radiologists reading each scan (versus one). They are also much more detailed than my scans from outside of the main cancer center/hospital. I'm sure it's because it's a teaching hospital with loads of fellows running around. That's fine with me -- another set of eyes can't hurt for sure.
I am talking with my MO on Tuesday, and we'll discuss the two new scans (bone scan and MRI) and I'm sure she will give me her take on all of it. I appreciate your perspective very much.
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Anybody else see this?
Pfizer stock dipped down yesterday after announcement that they are cancelling a trial because it will not be able to meet its endpoint goals -
the trial was designed to show an overall survival advantage for adding Ibrance to an AI or fulvestrant...
https://www.marketwatch.com/story/pfizer-stock-plu...
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another asco news, resolving a long~standing question that has had advocates for both sides
There is NO survival advantage to surgery or radiation for those diagnosed stage IV de novo..
good to have clarity on that point
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Candy, I think a significant part of your problem is that you typically have your MO appointment BEFORE you have your labs done and before you have had a chance to familiarize yourself with your scan report. This is backwards. You have no chance to think about the results, no chance to discuss with the MO. Can you go for labs the day before, or go in the morning and see MO in the afternoon? Can you tell them you NEED to see your reports before your appointment? Also, can you tell them, Look, I have stage iv cancer and I deserve to have enough time to address my concerns. Please allow more time or schedule a second follow up appointment. When she tries to leave, say you need more time, so how does she want to accomplish that?
By the way, is this nurse a Nurse Practioner?
For my research I usually do a keyword search (Duck Duck Go) and pick results that are from journals or other trustworthy sources. Also, I have twice called a testing company to directly ask their scientific team my question, and then relayed what they told me to my onc: “Here is what so-and-so at company said about this. Here is their phone number.” (Example, a genomic test about three years ago recommend neratinib for the ERBB2 mutation. But my onc did not recognize it as an activating mutation. So I called and asked them about it, and they said they believed it was indeed an activating mutation. When I reported back to my onc, she said they had called her about it (prompted by my call to them.)
I think that if an MO is good, they know it, and are not offended by learning something new. But if the onc is defending her ego and is threatened, it is much harder. My former onc simply would not read or discuss. He was a parked car. Nothing for me to do but fire him.
I agree with Sandi, that it is important to characterize this as a team effort. I always use the word “We” when discussing things with my onc, as in “What if we try this?” Or “Maybe we should get this test done now because...” Also, as Sandi says, to express appreciation and respect of for their expertise can smooth things. If there is something you think the MO needs to know, or something you think the MO could be wrong about, you might say, “Would you mind reading this and telling me what you think?” Or “How do you think this applies to me?“ That way you are not directly saying you think the MO is wrong or ignorant.
Finally, candy, can you get some support from a counselor, social worker, or therapist? Some support and advice on how best to interact with your medical providers? Some support for claiming your rights as a patient?
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BevJen, I intend to read up on your scan issue and think about it, and post later.
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Cure-ious - someone else posted that de novo paper in a different thread. I scanned through it and thought I saw something about age difference, but then couldn't find it again. Have you read the whole thing as to the demographic makeup of the sample size? Maybe I was hallucinating but I thought it was more focused on older folks.
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Cure-ious,
What is that Pfizer announcement saying??? I read the MarketWatch summary as well as the Pfizer announcement -- huh???
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Curious-Thank you for posting those articles. Interesting that Ibrance does not help people with earlier stage cancer get a better result. I still have my tumor so I am very happy to learn there is no survival advantage to having it removed or radiated.
BevJen and Penny-I'll add my 2 cents to the bone scans since I've had them done quarterly for the past 3 1/2 years-now I'm switching to every 4 months but I wonder at their usefulness. The bone scan report always is so iffy-it usually says something like it might be cancer but is probably arthritis. My numerous lesions are all termed "sclerotic" now which I think means healed. But the test seems like a waste of time because they can't tell whether an uptick is cancer or arthritis. I guess its usefulness is just to confirm the CT scan which I have done at the same time. I shouldn't complain-I'm glad the scan is interpreted as my being stable. The bone scan report always makes me sound a lot sicker than I think I am. I hope BevJen that your report is simply showing that you have sclerotic or healed lesions.
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Cure-ious,
Okay, I figured it out. It's for adjuvant therapy and it's not helping -- is that correct? It doesn't affect what's going on with us Stage 4 people.
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Here is the link for PALLAS trial update of Ibrance on early stages. I wonder if it's still helping us at stage 4?
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Shetland- I loved your post. A lot of good information. The last 2 months I have had a virtual meeting with my MO, then went to office for labs, injections, and Port flush. The receptionist has set up the appt in the am, the office stuff in the pm. From now on I will ask to reverse them. This scan I did not get to review ahead of time-- did scan on a Wednesday afternoon and I knew it would not be ready in Medical Records by Friday. Then a Holiday weekend with my appt Tuesday after the Holiday Monday. Bad timing of the scan. I didn't think about that when scheduling scan time. I do usually get to review the scan before seeing MO (which is the way I want it).
As far as time slot of appt. As you know, they have slots for each patient. I don't want to get where they have to schedule "Candy" 2 time slots. Kind of like taking up 2 seats on a plane-hahaha. When progression comes (I have not had yet) I may ask for 2 slots to accommodate my questions. But I don't want to do that routinely. Also how would they bill that? I would be taking up time that could be used for another patient. Don't want to start doing that.
No, the nurses are not NP's--- they are RN's. MO has RN and there are RN's in the infusion side of the office. I dealt with both over this mess.
No help from counselor or therapist avenue. Our Cancer Center doesn't have any on staff. I have asked before about this-- when first diagnosed for one. I also called a local counseling center-- no help. They said no services specifically for cancer patients. They usually deal with depression, substance abuse, or marital issues. No cancer support groups either. Over the last 2+ years with MBC it would have been good to have the aid of a therapist, but nothing available in my area. And the local services for depression, etc cost $35- $50 a visit out of pocket even with my insurance- I checked.
I will definitely try to think "we" when communicating. And I will try not to be defensive. I do remember saying over and over "I am sorry" when talking with the nurses about wanting to hold off on the Neupogen until I could talk with MO. I didn't want to make them angry and I was apologetic that I was not adhering to the MO's order. I did not have the attitude that they were wrong and I was right.
Thanks to all for listening to my woes. Enough discussion on this for now. We will see how it goes on Monday.
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Pfizer really could do a better job with its press releases! After a heart stopping few minutes looking at other coverage besides MarketWatch I finally found the word “adjuvant."
Chicagoan — exactly! I read those bone scan reports and assume I'm on my last legs. And yes, BevJen, the varied interpretations from different radiologists would be laughable if this all weren't so serious.
Hugs, Penny
P.S. I think the benefit of Ibrance at Stage 4 has been unequivocally proven!
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Thanks you guys for figuring that out, the minimal news blip I read did not clarify the specifics of the Ibrance trial, and so I was thinking WTH? its been keeping me alive...
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Cure-ious, on another note my markers(which had never been elevated) suddenly are. My MO quickly scheduled a new set of scans. Thankfully nothing visceral showing but there's some new “faint focal bone uptake."
Do I recall, perhaps a year or year and a half ago, you had some minor bone progression and successfully zapped it with radiation?
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Hi Penny,
yep, at 3.5 years into treatment, I had some progression- one new bright spot about mid-spine and smouldering lump of mets on my hip that had been showing up darker and darker with each scan- not enough to switch, my mo said we'd watch them but I consulted an RO who said that if I claim they are painful we can radiate them. Needed an mri to confirm and better localize the position of the mets for SBRt, but now at five years on I/F my bone scan looks all-clear. so I'm very glad we did not sit around and watch the spots get brighter or spread around...
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Cure-ious thank you SO much for that information! In my case they are looking at the “medial border of right scapula versusrib." I have no idea whether radiation will be an option or not but I'm sure going to explore.
Really grateful!
Hugs, Pen
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