Ibrance (Palbociclib)
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Hello. I’m not a frequent flyer on this as I’m bit technically challenged…but I’d love to say that I’ve read many stories over the years & I’ve gained much knowledge & strangely enough a bit of courage/strength comes from everyone to me collectively (though I like many absolutely hate those words as they are connected to my cancer; they’re kind of a “trigger” hoping it’s ok if I use them now); but I just wanted to say thank you ALL for sharing as even though I don’t keep up to date here I have gained/learned so much from everyone and I wish the best for all on this site past and present.
Im sure this is probably redundant issue; but I’m not aware of how to search within this thread for an answer advice info on this topic. So for now I’ll keep it as simple as I can:
RE: Cataracts & Cataract Surgery while entering my 5th year on Ibrance/Femara with PicRay as my “next line” as I have that mutation (which I’m told but haven’t investigated; is a good thing) I have two rapidly (from grade 2-7 in ~6 mos.) progressing cataracts and 2 posterior vitreous separations (2=bilateral).
Of course: my worries/anxiety are gigantic (unlike the 99% who have successful surgeries/recoveries every day.I think I’m honestly going to Opt-out of these surgeries; but really need to hear other stories (if any and don’t mind repeating them to me)? My biggest reason, may not be obvious to others here—but I think maybe it’s progressing to my brain. I am going to ask my MO for Brain Scan since I’m NED for my Lymph/Lung x ~4.5-5 years.
So, silly me is thinking it’s in my brain even though I’m NED; I’m not sure how it all works. HELP?
And thank you in advance; I appreciate all experiences & insight & thoughts.
Also, my apologies in advance; again I’m kinda cognitively & technically challenged; so I may not see all of your comments or be able to reply to all; just know that is my brain-fog; not intentional & I do not want to be rude/inconsiderate with regards to this thread’s etiquette/expectations in terms of communicating best on here.
Thank you for understanding all of this & bearing with my long-winded “simple” query. My best to everyone
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Bailey5. You are not rude!
I have no info for you, but I think you can Start a New topic, so people outside of the ibrance thread who might have info can see the question . On the top of this page it says "forum: stage IV/metastatic breast cancer only". If you click on that, it will bring you to a page that at the top has a place "start a new topic" that you can use.
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Hi sunshinedaydream - I wanted to tell you my experience with a PET scan a few years ago (back when my insurance paid for them). My esophagus showed an SUV of 7.3 and my oncologist went bonkers thinking I had a new cancer there (it’s in various places in my bones). After they took a sample of tissue, turns out it was GERD and after starting heartburn meds, it went away. It is surprising how much stomach acid can cause inflammation, so I hope this will helps put your mind at ease. Please let us know how you are doing after the next scan. Best of luck to you.
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sharware, I'm glad you had/have a proactive MO. Nice that it was biopsied right away and that it was "just" GERD.
Bailey5, I'm sorry you're worried. We get it. I don't have any answers, either, but I wanted to let you know that your questions are not inappropriate or out of line.
(((hugs)))
Carol
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cure-ious,
That study about the 5 day on 2 days off schedule for Ibrance is interesting.
https://www.nature.com/articles/s41523-022-00399-w
".....with the half-life of palbociclib (Ibrance) being ~27 h, recovery of Rb phosphorylation and cell proliferation during the off-treatment week is a concern. In a longitudinal biomarker study of palbociclib plus letrozole, recovery of tissue Rb phosphorylation and Ki67 levels to baseline was observed on day 3 and day 4–5 during the off week, respectively19. We, therefore, proposed a 5-days-on/2-days-off weekly schedule to allow bone marrow recovery during the 2 off days to avoid the week-long break. We hypothesize that this alternative schedule is more tolerable with less frequent high-grade (G3+) neutropenia and dose interruptions/reductions compared to the historical data with the 3-weeks-on/1-week-off schedule. Based on our previous study supporting serum thymidine kinase 1 (sTK1), an E2F-dependent enzyme critical for DNA synthesis, as a pharmacodynamic indicator of CDK4/6 inhibition20, we assessed sTK1 dynamics for target inhibition, and examined its potential prognostic value and utility in disease monitoring in this study."
As I understand the above paragraph, the 5 days on 2 off schedule resulted in less neutropenia d/t fewer consecutive days on treatment and maybe greater therapeutic effect d/t shorter breaks in treatment.
Are you monitored with the sTK1 blood test?
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No TK testing, but I feel better on the 5-2 schedule, and my ANCs seem a bit more durable
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Shareware: thank you for sharing your experience with GERD. Did you know you had GERD? My MO asked me if I had been experiencing any stomach issues/reflux/etc and I haven't. In general, I very rarely have indigestion or upset stomach - perhaps it's possible I just don't realize it, is that even possible? I am trying to eat better and avoid inflammatory foods to prepare for this upcoming scan. Thanks again for your response.
AprilGirl1: Glad to know I am not the only one who has received PET results that reference findings not noted by prior radiologists. I suppose there is an 'art' to reading the scans and each person interprets the images slightly differently. Perhaps a more experienced radiologist would not bother noting something that is 'probably' inflammation? Also, this was my fifth PET or 4th one since starting treatment. All prior scans showed decreased size and activity. Each scan showing less and less decrease. It seems I have plateaued in some areas. I will admit that when I was first diagnosed, I went on an extreme diet - cut out all carbs and sugar, and dropped from 134 lbs to 105 lbs in 6 months. I continued on the diet until earlier this spring (since my March scans) and have since been 'cheating'. I was hoping I could continue eating ice cream and dark chocolate and pizza like some of the other ladies, but I guess not. It was fun while it lasted. I've been back on my diet since this recent scan. Also - enjoy your time in Cape Cod! It is one of my favorite places in the world. I am not sure where you are staying or if you've been before, but our favorite part of the Cape is Eastham/Wellfleet area and the beaches/restaurants there. Provincetown is also a must visit!
Dancemom - I completely understand about the extra stress at initial dx. I almost didn't get my THIRD opinion from MSK, but I couldn't stop thinking about it, and not getting it was stressing me out, and it's where I ended up. It sounds like you are in a great place, getting superstar treatment! I do sometimes feel the MSK doctors are stretched thin, but I stay for the facilities and research. My insurance would not cover a PET scan initially, but MSK prefers PETs and claimed they could not read the disks from my local hospital that did the CT and bone scans. They insisted I have a PET said if my insurance wouldn't cover it, they would cover it. This blew my mind since my scans at the local hospital were delayed until insurance approval, which was extremely stressful when you’ve just been told you have cancer and they need to do more tests to confirm the staging. I now realize, MSK knows that if they use PET as the baseline scan, your private insurance will cover future PETs for comparison purposes to confirm treatment is working, which is what happened. Also - glad to hear your ANC was good to start your next cycle. Regarding your family business - is there anyone you can train to do the work that needs to be done while you recover? And if not, can you temporarily contract a company to do it for you? If possible, you should focus on rest and recovery (which I know is easier said than done, especially when you run your own business). Also - your note about the stuffing in your bra took me back to being a high school freshman and trying to stuff my bra the first day of school. It was a terrible idea and very uncomfortable. I doubt I was fooling anyone and I wonder how many of the teachers noticed 😂.
Cure-ious: thank you for the article. I have heard of the 5-2 schedule but didn't look into it further. It seems this schedule would be more effective and I would like to try it, especially with all the additional time off I've had to take recently due to low ANC. I sent my MO a message inquiring about it for my next cycle. Question: do you still have CBC performed before each new cycle?
Weninwi: Did you hear back from Mayo? Or decide to try Dana Farber? Hoping for some feedback for you soon.
Bailey5 - I don't have experience with cataracts, but have family members who had surgery without complications, but they did not have Stage IV cancer. Are you able to see ok with the cataracts? Also, I am trying to understand, are you concerned you have brain progression that is causing the cataracts? Or because you feel you have cognitive challenges? Do you have other symptoms? When do you see your MO next? Can you send them a message in the meantime to relay your concern and request a scan (I imagine this would be an MRI, but I honestly don't know). Also - never feel silly. Ask ALL the questions. We are our own best advocates. I ask my MO a ton of questions each visit, some which I know are far fetched, but if I have anxiety about something, I ask because I want to talk about it and get a scientific response. When I think she is going to laugh at me due to the subject of my question (because i think she will think I'm paranoid), instead, she says 'wow, you are really asking hard questions today' and then she gives me a straight answer, which is usually, 'yes, it's possible, I was at a conference 'yadi yadi yada…' but not something we are seeing or that you need to be worried about right now', or more recently 'it's possible, let's scan again and see’.
Enjoy these last days of summer everyone!
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bailey5, I get you with the worry about it spreading to your brain. I've been NED for almost 5 years now, but lately my "brain fog" has been really noticeable. My oncologist assures me it's normal with Ibrance/Femara, but the fact that none of my PET scans (I've had 11 so far) have scanned above my neck is worrisome to me. I did have a whole-body scan when first diagnosed in 2017 (bone scan, maybe?), but that was the last time anyone looked in my head! I asked if there was a whole-body scan in my future (or t the very least, a brain scan), and my doc says that without any symptoms, there's no need. Apparently, my memory issues and not being able to recall words aren't "symptoms"...
I hope you get that brain scan to set your mind at ease. Wish I had some advice about the cataract surgery, but I don't know anyone with cancer who's had it. My mom had it done at 78, my mother-in-law at 82. Both said it was "easy" and were so glad to have had it done. Wishing you the best!
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sunshinedaydream - I got a second opinion appt at MAYO in Rochester for Sept 6 and I'm on their cancellation list. They offered in-person or video appt, even for first visit. My first step was to fill out their Clinical Trials application on line. I then got a call back from Lisa from their Clinical Trials Dept and she was very helpful. She told me what to ask for to get the ball rolling when I called for an appointment with Medical Oncology: "a fresh set of eyes and discussion of any and all clinical trials". MAYO uses EPIC medical records system so they were able to get my records easily. After review by their Medical Oncology team I was offered an appointment and assigned to a doctor - I don't remember now if I was informed by phone or email. I also kept MAYO informed of my latest test results as they became available - like the liver biopsy. MAYO has very long phone wait-times (like 30 minutes) when you call to talk with the appointment desk, but otherwise interaction with MAYO has been good. Having to wait until Sept 6 while I'm off treatment is stressful, but at least I have an appointment. I also asked my MO to send a second opinion referral to Dr. Lee S. Schwartzberg. He is Chief of Oncology at Renown Regional Medical Center, Reno, NV and sees all their breast cancer patients. I was impressed after listening to video discussions on OncLive between him and Dr Mark Pegram of Stanford. Serious doctors. However, Dr. Schwartzberg requires the first appt to be in person. I'd be willing to travel to RENO, but my insurance coverage, as I understand it, will only cover a third opinion if the first two opinions disagree. I haven't heard back from his office yet. I also haven't acted on the Dana-Farber Cancer Center Second Opinion Program option - pay up front $2,4000 - but would still consider.
bailey5 - I developed bilateral vitreous detachments several years ago. Apparently not uncommon for people with nearsightedness i.e. elongated eyeballs. I was followed for a year with exams and special photos and instructions re symptoms to watch for that require immediate attention. The decreased vision that resulted from the vitreous detachment is what I describe as "a nest of floaters" in both visual fields that makes it seem like I'm looking through netting. So my vision has been compromised but it's been stable. I also have early cataracts and saw a specialist for this. To my understanding, she did not draw a connection between my cancer diagnosis and the development of cataracts. Proceeding with surgery would be based simply on when I found the visual decline problematic - i.e. "I can no longer read road signs". Based on my experience and understanding, I would not draw a connection between cataract development and brain mets.
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Good afternoon everyone! It's been awhile since I've written but I've been reading and trying to catch up for awhile. These shorter pages make it hard for me to keep everything straight! So I have some thoughts on several recent posts but I am not sure that I remember who posted what, so please bear with me!
- As for seeing some inflammation in your PET scans: For two consecutive scans they saw inflammation in one of my tonsils. The first said it could be nothing and just recommended checking on the next scan. The second one said it was a little larger and they recommend a different scan to check it out. Both times my MO said not to worry about it, that it was likely just a cold or something. And I just had my one year scans on 15 August and low and behold! Nothing there! I guess sometimes inflammation isn't a big deal.
- As for fatigue, dose reduction, ANC, and working: I was diagnosed in August 2021 and I am an active duty military member, though thankfully I have a desk job. I'm still active duty but have reduced my hours based on stress, fatigue, anxiety, side effects, etc. I started on 125mg but I frequently had to take an extra week off because of low ANCs. MY MO was okay with this because I was having a good response to the meds even with extra time off. But I was exhausted all the time. Frankly I've been exhausted ever since chemo in 2017! Finally in June he stepped me down to 100mg. My first month I still had to take an extra week off but this last cycle by ANCs were higher than ever after one week! I still was having a lot of fatigue though. So my clinical pharmacist suggested off-brand ritalin which he said has been looked at for improving cancer-related fatigue. I'm one month in and things have been great! I am on the lowest dose and I take one pill super early in the morning around 0630 and then one more around 12-1230. And I've been sleeping a bit better as well. I still have some fatigue but it has really helped. As for work, I feel y'all with this cognitive decline. I am only 42 and my brain feels incredibly stupid at times. I forget words constantly, mix up b's and p's when typing, forget names. I've talked with my MO and the best answer I get is it's probably due to the AIs, being in forced menopause so early, and stress over a stage IV diagnosis. I'm kind of not happy with that answer because I constantly feel stupid. I forget stuff all the time! I lost one of the rings my husband gave me, three of our forks. It's just a big stressor for me which also makes it worse (just a vicious circle!).
- On pain: So for my past two PET scans my lesions have decreased in activity and seem to all be stable, which is great! I have innumerable lesion throughout my spine, pelvis, ribs, and skull. I have been on the lowest dose of morphine for about 6 months to help cope with the pain but I am wondering now if I should taper off of it? Have any of y'all decreased pain meds after being stable? I will say, I have extensive joint pain, again from that AI!, but the morphine doesn't help that at all (or at least, I don't think it does) and I still have rib pain, maybe from nerve damage. Maybe I should talk to palliative care? Sometimes I just feel like I am on too much medication. I mean I have ibrance and anastrozole, lupron and zometa (quarterly), then I take synthroid, morphine, this off-brand ritalin, an antidepressant, some gabapentin for nerve pain and night sweats, and constipation meds, plus calcium. I just feel like all I do is take meds. Is this weird or strange?
Anywho - April I hope your trip goes well! Dancemom, congrats on the ANC and hang in there with those TEs! Ciaci, I had a full body PET to rule out brain issues and check on mets I have all over my body. Weninwi - I hope the MAYO appointment goes well for you!
Thank you all for always being there and understanding! Sending y'all good thoughts!
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After thre years of Ibrance, my run is over! What do people take next?
I am ER positive and Her2 negative
I'm sad ( Thank you0 -
foreverhopeful, your bio says Her2-. So you mean you’re ER+, PR+, Her2-? I went from Ibrance and Letrozole to Xeloda and Faslodex. I’ve finished 11 months and still doing okay.
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Hi Kbl!
Thank you for your reply. You were correct - I fixed it:)
Glad you are doing okay!
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foreverhopeful, please let me know how you’re doing and what you decide to switch to.
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Foreverhopeful - I struggled to get 19 cycles out of Ibrance/Fulvestrant. Then I tried Verzenio/Anastrozole. Epic failure with 6 new mets to bones and 5 in liver. Since I had Taxol for early stage, my MO took Abraxane off my list (but I can try it later). So then my choices became IV Halavan or oral xeloda. Both are chemo. After discussing the pros and cons and, of course, doing my own reading, I decided on Xeloda. The main 2 reasons were that it would allow me to travel easier and it crosses the BBB. Since I had mets in my cervical spine, I liked the idea of something that crossed the BBB. I've been on it since last January -14 days on/7 off. The improvement on my first scan was remarkable and my ca27.29 continues to drop to an all time low for me since MBC dx. We never know what SE we will encounter but I do not have any gastric problems. My hand hoof syndrome is mild and controllable through diet and general feet care. My hands are fine except for very weak nails. I've been doing so well that we reduced my dose from 3000 mg to 2500 in cycle 8. In cycle 9, I was hit with fatigue. I just started cycle 11 today and we've dropped my dose to 2000 mg. Xeloda is easier on me then my other drugs and it's working better then hormone therapy + CDK4/6 inhibitor ever did. Good luck.
I'm also including a link you may find helpful. https://www.nccn.org/patients/guidelines/content/PDF/stage_iv_breast-patient.pdf
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thank you weninwi, Cisco, sunshine & dance mom:
I will start new thread & rephrase: my actual questions are two:
1. Are side effects of Ibrance/Femara use r/t cataracts & GU chsnges common? I ask as I’m thinking…I’ve been on I/F combo 5 years & if I have “Bilateral” cataract surgery (which went from “2” - “9” in less than 6 mos (which is very very rapid advancement)?
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2. Re: spread to my brain; my thoughts there were Re: longevity; not really in r/t developing cataracts; but if I have them both repaired & my cancer has already gone to my brain what’s the point of going through all that surgery. I don’t know what is likelihood of my cancer being able to spread somewhere else while my original Lung/Lymoh are currently via CT Scan both showing NED: I do always fear it’ll pop-up brain/bones/lungs like it did in my lungs/lymph 7 years out after my stage one (extensive surgeries and low oncotype DX scores and ‘bout year in tamoxifen). I celebrated my 5-year csncerversary and didn’t look back & wham=stage 4.
Don’t get me wring( I am so very extremely grateful that I/F combo took with me snd ygat I’ve gained 5 years (doesn’t make worries & frightening thoughts subside
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(frequency/retention/urgency)I think I get really insomniac-type nites & I write on here until I’m out cold; I remembered this post just now and it was posted a couple days ago—gotta love ambien (which after 4 years I just increased to 10 mg); glad I’ve never had other adverse effects like driving/cooking w/o remembering.
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kbl and rk2020,
Thank you for your responses. I have my scans on Thursday and then will meet to discuss a plan with the oncologist. It’s nice to know what could be ahead.
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Please let us know how the scan goes.
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Hello,
How is the protocol of Abraxane for metastatic breast cancer? I am reading somewhere the cycle is once in 21 days and in some places it sayson day 1, 8 and 15.
Thank you in advance!
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To All on Faslodex (fulvestrant),
I'm still waiting to learn what my new treatment plan will be, but my MO has hinted more than once it may include Faslodex (fulvestrant). I know from this website that many women get these injections. I'm 130 pounds and have lost muscle so I'm concerned about the 500mg IM dose, given as 250mg (2.5ml) in each buttock or ventral gluteal area, over 1-2 minutes. That's a lot of volume and a long duration. Any suggestions on how to get through these injections would be appreciated. Would taking a low dose valium help?
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weninwi- Let me start by telling you that I’m a big baby when it comes to getting poked. You would think after all my “practice” these days that I’d be better. Well, I guess I am. I no longer pass out. Lol. Anyway, if I can tolerate the Fulvestrant shots, you can too. The idea of it is the worst part. I made sure that if the shots were straight out of the frig that I either held them to warm them or one time the nurse put them in a warm blanket for a couple of minutes. I then made sure the muscle in the buttock getting the shot was completely relaxed. You can do this by lying down but I usually didn’t have anywhere to do that. So I would face the recliner, put the knee of the side being injected up on the recliner and stand on the opposite leg. Then I would start talking. Yes talking. It helps me keep my mind off of what is going on. I would blabber on about anything. The slower the nurse injects, the easier it is. Then immediately afterward I would gently massage the area of the injection for a bit. This helped distribute the fluid so it didn’t form lumps. I used the seat heater on my way home but I honestly don’t think that did much. But what the heck, do it. It can’t hurt. I weigh less then you and I did ok. I had joint achiness for a few months but then it went away. I attributed the aches to Fulvestrant but who really knows? Good luck.
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rk2020,
Thank you, everything you shared is helpful. I'm thinking sitting in a hot tub and water walking, for a few days in a row, might help reduce the likelihood of lumps forming.
Wendy
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Mera -- There's an Abraxane thread you may want to check out: https://community.breastcancer.org/forum/8/topics/...
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katyblu - great to see you!
Weninwi- Rk2020 gave you great tips for fulvestrant. Like RK2020, my injection nurse makes sure the vials are room temp as it is easier for both the patient and the nurse who is "pushing" the shot - it is thick stuff from what I have been told. I take my weight off the hip/side the nurse is injecting and typically lean on a counter that is in the exam room where I am getting my shots. Also, like RK - I chat with the nurse, it seems to help me not focus on the shot but I haven't found to be overly painful. I have not had an issue (yet) with getting any lumps. Yes, I have had a bruise once or twice but nothing serious. I do walk a bit after and have in the winter turned on my heated seats but not in the summer. I started fulvestrant 11/2019 so have had 33 months of fulvestrant (first month they front load twice in that month).
I got home yesterday from visiting and helping my parents (out of state). I am headed to the East Coast for a week with friends, can't wait! I wore an n-95 mask on my trip last week (short 2 hour flight) and will wear one tomorrow as well. So far, so good!
Sending good vibes to all for a good week and nice labor day weekend! If anyone has scans coming up, let us know!
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Aprilgirl I hope your trip is going well.
Tany
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Hey everyone! I hope y'all are doing well!
So with my last two scans turning up as stable, I talked to my palliative care team about tapering off of my pain meds. We came up with a plan and since I had a long weekend off of work last week, I started tapering. I got 3 days in to reducing to just one extended release a day and turns out, that pain medication was actually keeping stuff at bay! By that third day I was in a bunch of pain, ended up taking a lot of my break through meds. So now I'm back on my extended release train. I guess even though bone mets are stable, they can still cause pain? I have extensive mets up and down my spine, in my pelvis, my left femur head, and my ribs. And man could I feel it in my spine and ribs! I guess my question/fear is: Am I being a baby? Do stable mets actually cause pain? I see a lot of you ladies do not take opioids at all, so I wonder if I'm jumping the gun or being lame (if that makes sense?). I mean, I am on the lowest dose of my pain meds, but it IS still an opioid. Thoughts?
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katy, you are not a baby. You aren’t being lame. Please don’t compare your level of pain to another person. Trust your instincts about your own body. You know how you feel. If you need pain medicine, you need it. No one gets a pat on the back for enduring unnecessary pain. For me, it is about quality of life. I believe that’s what palliative care is about. It’s great that you tried to see if the pain meds could be tapered off. You found things are better when you take a low dose of them. I would tell your oncologist about it when you see her next time and see what she says.
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Thank you Divine! Sometimes I just worry about how I'm dealing with with this and whether I am going about it the right way. But I guess there is no specific right way, just what works for each person. I forget that
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Katy -Divine said it well. You do you.
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Katy,
Like you, I have had extensive bone mets. Mine are sclerotic (healed) at the moment and cause no pain so I am concerned at your level of pain and would suggest you contact your oncologist immediately. I don't mean to be an alarmist but it's possible that you might need a more sensitive type of scan-such as an MRI to make sure that there is no progression. You certainly don't want to stay on a treatment that may not be working. Your oncologist might also recommend radiation as a palliative measure. Best wishes.
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