Ibrance (Palbociclib)
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and Rabbit, how could I have forgotten to burst out singing and dancing to Sister Sledge. We are family! 🎼
Love to you all. You mean more to me then you will ever know.
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Rabbit- Wow. Good grief. Sorry you had all that-- the tech and then the billing issue. But, Woohoo, to the stable scans. Thanks for asking about me. I did lower my Lynparza dose a smidge. From 600mg a day to 500mg. I told my MO I just wanted to go down a stairstep in the dosing. It has helped some. I do not have the continual increased saliva I did have. Sometimes the nausea is minimal, then it picks back up. I posted on another Thread this example--- I was feeling better the other day and made a pizza for supper (I love pizza). I ate it and then afterword felt like I ate a greasy brick and felt sick the rest of the night. Then another example, I was ordering my groceries online for curbside pickup and felt nauseous just looking at and thinking about the food items. I go for my scans Nov 22 so we will see if the Lynparza is even working.
Glad they are thinking of not using the maximum dosing with us in the future. We started me on 125mg of Ibrance and had to lower to 75mg due to the neutropenia. Then we started me on the max dose of Lynparza of 600mg and we have had to lower it once so far. I am 5'1" and 135 pounds. We should look at BMI and not start all of us on the same dosing.
Here is a thought I have been asking myself. Anyone chime in....
When I was on Ibrance and my ANC was so low, we said that with Ibrance it is different from regular chemo and the white cells are sleeping not dead and we are not as susceptible to illnesses as we may think. So how about with other therapy, not chemo, such as Lynparza or Piqray???? My WBC is 1.9, ANC is 1300 (1.3) now on Lynparza. With that WBC, wouldn't I be immunocompromised and at risk of illness???? Does the Lynparza make the cells sleep versus dead??
I error on the side of caution with my counts. I am super careful about germs and crowds. I think that any of us with the low numbers should be considered high risk and be careful.
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Candy - Please post your scan results as soon as you get them. I hope the Thanksgiving holiday doesn’t delay your results. 🤞🏻Sorry but I can’t help you with your WBC question. I think researchers in general need to either study this area better or if they have the answers, educate oncologists. Even with Ibrance, I’ve heard differing opinions on whether the cells are sleeping or not. One woman posted on another forum that she was on Fulvestrant only because her doctor thought it was too big of a risk to start Ibrancelast Fall. Really? I started during the pandemic. 🤷♀️
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RK2020- I will post an update on my scans. I will know the results that day. I do the scans, then see my MO a couple of hours later. That is how they try to do it for those that travel into the cancer center.
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prairiesea, so great to hear from you and I'm so happy that Verzenio is going well.
KBL, great to hear from you and what a relief that your nausea is better. 4 days with your grandson must be wonderful. My kids do not have kids yet so I have to baby my dog
RK2020- also great to hear from you and thank you for that article . I'm on 75mg Ibrance and my MO has told me that clinically it's has shown to work as well as higher doses, do why start us so high ?!
Candy, good to see you, too! I'm happy you have less nausea on a lower dose. Please let us know about your scans and we are in your pocket for the scans ! Re low wbc on Ibrance vs chemo. My oncologist explained to me that Ibrance suspends wbc production but does not kill them off which is why she says they don't give us neupogen when our counts go low as they will rebuild as soon as we stop Ibrance. Now, I know in the past your onc I believe gave you Neupogen due to low counts from Ibrance and our dear SF-Cakes was hospitalized for complications from low white counts . I had 2 dose reductions from low anc and have been on 75mg Ibrance for almost a year (will hit my 2 years on Ibrance at the end of this month). I have continued to work (selling real estate ) using masks , hand sanitizer , no clients in my car etc but have not contracted Covid (now fully vaccinated wand had a booster). My son lives at home and works at a grocery store and goes to college (still online ) and I was worried about him getting covid or bringing it to me but so far we've been fine. Where I live we have a very high rate of vaccinated residents (over 80% ) but of course not everyone in cafes and town are residents and we are a tourist destination in the summer. My onc has been supportive of my working as long as I feel good and WANT to work. My husband and I are pretty careful , didn't attend a fun but indoor Halloween party as it seemed risky : indoors , dancing, drinking and eating and crowded. We do socialize in smaller groups and that has mainly been outdoors but the weather is is now cold and rainy.
BAP- so sorry about your infection and hospitalization. I hope you feel better.
RRabbit - so proud of you that you explained to the tech how painful the scan position is and she actually changed her approach . It's sad that we have to constantly advocate and it gets so tiring . But, you've have helped all patients as this tech will not forgot this or you. Still dancing about your good scans:) I started Ibrance Thanksgiving day 2019 and had a few weeks held in that first year so I think I'll be starting cycle 24 in 2 weeks but it could be cycle 23 as a few weeks off over year 1 could have added up to a month lag if that makes sense .
SondraF started almost on the same day as I did, SondraF check in soon if you can
Katyblu , hope your pain is not too bad and you see improvement / less pain soon .
No one understands what we go through except all of youwho share this experience. You all mean so much to me. Once a dancer always a dancer - pls keep posting even if you change tx as we are all bonded and also learn from each other .
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Hi Aprilgirl. Thanks for mentioning me. Yes, once an Ibrance Dancer, always an Ibrance Dancer. I will always check in here.
My question was about Lynparza, Piqray, and other targeted therapies versus standard chemo. Do those meds 'suspend' the WBC's the same way Ibrance does??? I really do not know. So I think that anyone with low counts due to their current treatment med should really watch for chances of infection---- Covid, influenza, colds, or any illnesses.
I just really wonder what the evidence shows---- low counts on the various treatments and the infection risks.
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Rabbit, I'm so happy you told that tech about your last experience with her for your bone scan! It sounds like she may have done a little reflecting on her approach, despite her initial attempts to gaslight you, and treated you with more compassion as a result. Good on you! Those conversations can be hard, especially given all the crapola we have to already deal with. We already have scan anxiety and, ahem, cancer, do we have to do the educating, too? I'm going to ask my next tech if we can do a picture with me smiling AND raising my middle finger. And then maybe could they print that out for me?
I'd love to hear more about the low WBC, ANC and lowered immune system with ALL of these meds that we might be prescribed. When mine crashed (thanks to starting with the highest possible dose - also relieved that this may no longer be standard of care), the hospital doc was worried that if my fever was the result of being exposed to a virus, my body wouldn't be able to fight it off on its own. Turns out I hadn't been exposed to anything, it was own normal body bacteria that my counts were too low to manage on their own. So yeah, it concerns me, even though my numbers all improved rapidly with stopping the med for a couple of weeks and restarting at 75mg. Like everyone else here, my numbers are now "acceptable" to remain on Ibrance, but never in a "normal" range. Hahaha, one of the kind oncology pharmacists told me "it's possible you won't ever be in a normal range again" and I laughed and told her, "oh, you don't know the half of it!"
Also, and forgive me if I've posted this before, the hospital stay taught me to always keep a clean pair of undies, a phone charger, and a good novel in my purse at all times. I had none of these things when I went to the ER because I just figured they were going to send me home. I did, in the night, figure out a sneaky way to charge my phone on the back of the computer in the room, ssshhhh.
Ooh, I bought some marionberry flavored gummies for sleep, but so far my combo of dark cherry juice, CBD/very low THC, and an "old school" antihistamine (also quoted from the pharmacist) seem to be working pretty well. I'm in a virtual MBC support group and one of my peers said the gummies helped her sleep and also feel "strongly connected to the earth". We all went "cooooool" and then laughed like hyenas. We joked about renting an Uber van and going to dispensaries and then to a bakery. Which I would totally be down for!
And I agree so much with Aprilgirl - once a dancer, always a dancer! I seriously love and care for everyone here, when the site was having technical problems, I was kind of teary. 🥺❤
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Candy, that is a great question. Ask at your next appt and let us know if Lynparza suspends white blood cell production or kills them off.
Being careful due to possible immune issues due to meds is frustrating. It is such a dilemma for me, especially since we are stage IV - I want to be careful but don't want to stop "living" when I am feeling ok right now on ibrance/fulvestrant. We all know too well that cancer cells morphs which requires new treatment that might make us nauseous, go in more frequently for infusions etc. My husband and i have been good savers and are not yet ready to retire. However, we were discussing a future weekend get away and he thought the flights were a little expensive. For me,I have had a great year with work and feel relatively good. I told him that we always have been careful to save for "rainy days" and retirement but guess what.....IT'S RAINING, at least for me. Time to seize the day and all that, within reason. We booked the trip;) When my onc told me, (when I asked) that my life expectancy should be "years" vs months I took that as 2-4 years. My husband took that as 10 plus???? I am just about at 2 years (next week is my 2 year stage IV cancerversary). Sigh. This is a subject for a future post;) Of course I booked the trip planning around fulvestrant injection, prediction of white blood counts, work commitments etc. New normal, right?
SF Cakes - your virtual MBC group sounds amazing! I think a field trip would be educational and FUN! Great advice on having a "go bag" at the ready, including a phone charger and a book.
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Hey aprilgirl, I always look for your posts because we are med twins :P I had extremely (as in, one or two mm) small progression in my lymph node last scan so they are hustling me along to surgery in three weeks to take out the primary and axillary nodes but I will stay on Ibrance as the bones look "beautiful" according to my MO. I was held a week last month too for low counts, and if they aren't above 1 this month then I've agreed to finally throw in the towel and go to 75. While I feel more or less fine with low ANCs, at this point its more for safety sake, for the surgery and after and the covid and flu season. I swear my low counts have something to do with amount of sunshine because you can see them go up and down with the sun pattern, so this month Im trying to consume more low fat dairy and see if that helps :P
The tech issues have been a real pain for signing on lately!
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I swear my posts disappeared! I take it as post-Halloween tricks!! Anyway, I post again: thank you so much ladies for pocket duty, as Rabbit said we are in this together, nobody understands what we are going through except us. My experience with new -general- clinic/ scans was interesting after all. Since I was the only patient with C condition, staff provided high level of care, all their patients were there for X-ray dexa or kidney stones. I asked the technician about the results, he replied usually within 3-5 days but hed gladly put it in high priority for me, so 24h... I hate doing any tests Fridays... hopefully Monday or Tuesday the results will be ready. I blame insurance for this 2 months delay..
I do care about everyone, once a dancer always a dancer
)) April, I had to back to my notes, today is the day I started treatment as stage 4, 2 years ago!
Candy, great question please do educate us when you find out the answer.
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Aprilgirl, Interesting your onc said “years" about your life expectancy and your husband thought that means 10. Great way to see the cup as half full. Almost 2 years ag I had a conversation with my breast surgeon after my lumpectomy about whether I should do the radiation follow up that was recommended. She asked why I was hesitant and I started with being stage 4, Ibrance lasting maybe 2 years, limited time after that, etc. She said she thinks I have not just years but decades ahead of me. What?? I've never heard that again or read anything like that, but it stuck with me. I do think she exaggerated quite a bit but I still liked hearing it. I did the radiation. Glad you're planning a getaway!
Snow-Drop, The wait is tough, definitely. 🤞🤞
Sondra, So glad you're scheduled for surgery on your primary. I know you've been wanting that. 😊
Hi to everyone here. 👋 I don't always have a lot to add, but I so appreciate and care about everyone here.
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Concerning the WBC's with Lynparza use---- I was reading today and with Lynparza there is a small, but serious, chance of developing leukemia. So, in my mind, the cells are not just "suspended". Also, the RBC's and hemoglobin can lower to the level of needing a transfusion, so, yet again, sounds more than "suspended" cells. All this is above my mind, but thinking the low WBC's and ANC could cause febrile neutropenia and problems with illness.
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ShetlandPony posted this to me on another Thread. Check it out--- about febrile neutropenia with Lynparza. Just keep scrolling down thru the side effects and the intervention of each. The neutropenia one is the last side effect they cover. Also, the OlympiAD trial is the one for MBC, as this med is also used for ovarian and prostate cancers.
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Rosie-Wow-decades would be great! Fingers crossed for all of us.
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Hi friends,
First, as always, I’m sending good energy out into the universe for each and every one of us! Thank you for the honesty, insight, information, vulnerability everyone shares…
I just finished my first cycle (3 weeks) of Ibrance and my counts plummeted. I feel like I need to bubble wrap myself. My ANC is 0.30 and WBC is 0.91. Am I the only one who’s dropped THAT low? Yikes. I guess I should note that, ever since chemo/radiation back in 2014, I have always been on the low end of the “normal” range. Anyway, as for Ibrance, I have this week off, then I’ll repeat bloodwork and see if I can start the 100 mg dose. I noticed another post today about clinical trials reviewing multiple doses to consider both toxicity and efficacy. Uhhhh…yeah…that would be good.
Hope everyone is having a good Monday.
Hugs from Portland, OR!
Lisa
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LGP1111- Yes, that is really low. I’m surprised you didn’t “fail” 125 mg after 14 days. I’ve also run on the low side if normal since AC+T in 2016. On Ibrance, I never got as low as you, but I stopped taking 125 mg after 14 days due to low ANC. I took a break for 7 days and then retested my blood. Guess what? My ANC was lower! So I had to take another 7 day break before starting on 100. And it was the same story on 100 mg. It wasn’t until I was put on 75 mg that I could tolerate a full 21 day cycle with only a 7 day break.
Here’s the good news - my first PET after starting treatment showed diminishing and stable mets! Fist pump.0 -
RK2020- Woohoo on diminishing and stable mets !!!!
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Aprilgirl1, thank you. I did have a great time with my grandson. I am so appreciative to have him. My daughter was pregnant at the time of my diagnosis. I had no idea what being able to spend so much time with him would mean to me. I'm thankful he is close by.
I hope you have a great time on your trip. Love your husband's way of thinking, ten years or maybe even more. Hugs!
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LPG1111
Yes I experienced the same on 100. So now I’m dropping to 75. My white counts were fine up until my last pill. - neutrophils were 1.9. And then on my off week everything dropped dramatically and my total Wbcs were 0.6. I ended up with an infection due to the low counts. So now Once I’m better we will try the 75. And if that’s too much then we will do 75 for two weeks on and two off. I’d rather not get this sick again right before Christmas. As morbid as it sounds, it could be my last so I’m desperate to make sure those counts don’t drop that low again
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Snow-drop - still in your pocket, hope you get results soon! Nothing like the dread I feel waiting for scan results.
RK2020 - diminishing and stable mets for the WIN!!! Fantastic news!
LPG111 and B-A-P - so sorry. Hoping 75 mg or 2 weeks on/2 weeks off works well for you both. B-A-P, of all people we understand making the most of every holiday and if I remember, you have young children. Wishing you smooth sailing from now through the holidays and beyond!
SondraF, we are med twins except I am on faslodex (stage IV after stage 1 node neg dx 11 years ago and completed chemo, rads and 7 years femara - not to sound bitter). I am so happy for you that they will take out your primary tumor. Any cancer gone by meds or surgery is less cancer to deal with!
Rosie24 - yes and AMEN to your breast surgeon stating 10 years! I am usually a 1/2 full perspective type person but Stage IV and the stats (I know they are generally old stats) are and were a gut punch. My husband is the love of my life but I also need him to be a realist that my good (current) response to treatment will change at some point. I do take comfort in seeing others need to shift treatment and do well on the new treatment, so there is that!
Candy, keep us posted on what your MO has to say. Lynparza is most likely in my future, too (my MO has mentioned PARP and ATR inhibitor for my ATM mutation, down the road).
FINALLY got my husband on board with estate planning meeting with an Atty. Major check mark to get off my list, meeting on 11/23.
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Aprilgirl,
Yes ! I have a 6 year old son and this holiday means more to me than any other before, so I’m hoping I can avoid infections. I hate having to even entertain the idea that it could be my last but with all that’s been happening lately , it’s just so hard to tell what what it’s going to go. I’m hopeful though
I know a home IV program is possible as I just finished my antibiotics at home as they had identified the bacteria (and subsequently a treatment I didn’t need to be in hospital for ) . I’m hopeful reducing my dosage will be the ticket but in the back of my mind I’m nervous. I’m going to ask for more monitoring blood wise just to make sure.
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BAP - I’m glad you are home and being treated. Please keep us updated. And don’t lose, I’ve heard incredible stories of ladies who had a hard time with treatments to start and wound up finding their magic bullet down the line - sometimes not until 4th or 5th line. Whereas I hope you can make Ibrance work for you, my point is that all is not lost if you have to try something different. I know this must be incredibly tough and draining but we are just a post away if you need support. Hugs.
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I'm finding all the posts about low neutrophils, low white counts and other changed lab values while on Ibrance very helpful.
I was initally started on Verzenio because of a history of Valley Fever. I lasted on Verzenio about 26 months (most of the time on 100 mg). My labs on Verzenio were always pretty good (low normal ranges or slightly below normal) with the exception of albumin and protein levels. I finally came off at the urging of my MO because of all the GI complications including loose stools (which I did get under control), stomach pain, food intolerances (finally got relief avoiding high FODMAPs), low albumin, low protein resulting in lower leg edema, and malabsorption of nutrients (Vit B12, Vit D - these improved when I switched to sublingual supplements).
I'm now on my third week of Ibrance. The good news is that my GI symptoms are now resolved, stomach pain is gone, my stooling pattern is back to normal, food intolerances have gone away, my lower leg edema due to low albumin and low protein is resolving (I don't know albumin and protein lab values yet), and I just feel better.
The bad news on ibrance is lower lab values. After two weeks on 125 mg my ANC has dropped to 980 and my White Count is 2.5. My MO wants me to complete the third week and then repeat labs. And I'm now to follow a list of neutropenic precautions. These low lab values have me nervous. I'm on the slender side and have lost muscle mass (5'5" - 122 pounds) and wonder if that is a factor when it comes to dose tolerance. I don't like being immune compromised and my MO hasn't indicated if she might change the dose.
Questions: Some posters write their ANC values in decimals. Would my ANC of 980 = 0.98? What is considered a "cycle" of Ibrance - "one week on" or the full "three weeks on and one week off"?
Thank you for any comments offered.
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WenInWI - I found your reference to FODMAP interesting as I had never heard that term. I've googled it and found a nice graphic of foods to enjoy and foods to avoid. I'm on Verzenio now so thank you for that.
First off - yes, your ANC expressed as a decimal is .98. Whether you state 980 or .98, we all understand what you mean.
Ibrance/Fulvestrant/Zometa was my first line of treatment but due to surgery I started Ibrance almost a month after Fulvestrant/Zometa. After 14 days on 125 mg my ANC dropped to 828. I was told to stop and we would re-test after a 7 day break. After my break, my ANC had dropped to 777. I did not belong to any forums to get feedback from others so I was heartbroken. After a 14 day break my ANC popped back to 1354 and I was given a green light to start 100 mg. After 14 days on 100, I was back down to 840 and had to take another 14 day break. Are you seeing a pattern here? Round and round I went for a total of 4 attempted cycles. I didn't have success completing a full cycle until my 75 mg dose was delivered. In addition to low ANC, I also had low platelets and hemoglobin on the higher doses. Nothing requiring medical attention but low enough to cause bruising and fatigue. My numbers and all my other SE were so much more manageable on 75 but as time went on, the toxicity built and my numbers started a slow downward trend and fatigue set in. That being said, I wish I was still on Ibrance!
I'm about your size and often thought why are they starting me off on the same 125 mg dose as a woman weighing 200 lbs? I found the Ibrance Australian clinical trial online and although in my opinion, this needs to be studied more they stated that weight is NOT a factor. 🤷 That doesn't make sense to me but that's what it said.
When I was struggling on 100, I had 2 oncologists and they differed on whether I should drop to 75 or not. My generalist preferred that I move to Verzenio at the highest dose. My Moffitt onc said she had plenty of patients doing well on 75. I chose 75 with the thought that I could always try Verzenio later. At the same time I also started researching alternative Ibrance schedules. At the time some ladies were posting that their MOs weren't on board with these alternatives but I think more and more are now open to 5day/2 day or 2 weeks on/2 off schedules. So that may also be a possibility for you.
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LPG and WeninWI,
I'm wondering if your labs are being done after the 3 weeks on Ibrance but before your week off? The week off is part of the Ibrance cycle, and my understanding is that labs should be done after the week off, or maybe the last day off, to give your counts some time to recover.
Our MOs have varying approaches to low counts and especially our ANC. I often had ANCs below 1 at the end of a cycle, and my MO was very comfortable with me taking an extra week off to get to at least 1 for the ANC. I ended up staying at the 125 mg dose for about a year and a half with frequent extra weeks off, and have been at 100 mg for about a year. 980 is pretty darned close to 1000, and both my first and current MOs would consider that close enough to restart. Again, there are many variations in how our docs deal with our low counts. Good luck to you both, and to all of us here!!
RK, Great news on your stable PET 👍
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April, thanks 🙏
got the results yesterday, long story... ran to clinic to pick up CDs for my MO. I was curious to see the images then I understood the CD is empty, another trip to clinic and got CDs and report, the report was very simple unlike those from past 2 years, many information that we already knew was missing. anyway, MO visit today: she said (after seeing images) well if this cat scan doesn't show things we know, in 3 months- next scan- we will see them, She continued don't worry if we don't catch progression early, you know cancer is not curable, your cancer is slow growing, there are better treatments and trials, if first line doesn't work we go second third or fourth and she talked about toxicity of drugs-not directly mentioned ibrance- we use them until they are not toxic your body etc ... I am beyond hopeless (her tone was entirely different from a month ago), I am sure she meant well but really? Her first line of treatment is different and I found out she doesn't prescribe ibrance at all for her patients, she is my second MO. I hope insurance approves to get next scans done in cancer center so it would be a peace of mind, Spine MRI reports stable slightly diminished bone mets except the relatively large abnormality in my lung, which the scan was unable to capture it, while I should be happy about the results but I can't understand what she referred to, I am confused.. this low quality scan doesn't show anything in particular.. my guts tell me she wants to put me on her trial (as she mentioned) so she started psychologically preparing me 😔 I hate this disease more than ever, makes me powerless, seems I can't make decisions for myself.Ref low wbc, a nutritionist suggested taking vitamin D, vegetables, 20-30 minutes daily- light work-out, help boost your immune system. I see those who work out daily enjoy a better qol. For low ANC, RK is right.
Waving to all 👋
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Ahhhhhh, I just typed a response and lost it all. Grrrr. I’ve got to run so have to keep this short now.
Snowdrop - I’m so sorry that your MO didn’t have more empathy for our struggles and the anxiety we live with. 😞 I’m shaking my head and am at a loss of words to comfort you. I hope she redeems herself quickly. Hugs.
The Ibrance site for healthcare professionals gives these guidelines for monitoring for neutropenia:
Monitor complete blood counts (CBCs) prior to the start of IBRANCE therapy, on Days 1 and 15 of the first 2 cycles, on Day 1 of subsequent cycles, and as clinically indicated.
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RK2020
Thanks
I’m hoping this dose is going to be the magic bullet. They didn’t want to put me on anything after my five week hospitalization and said that chemo would kill me faster . So basically they wanted to send me home to die. I convinced them to give me the ibrance. So I’m hoping to be able to take it long enough so that my body can recover enough to be able to take other meds down the line. So I’m hoping I can make ibrance work . Maybe I can ask About verzenio as well. But I see my MO next week to figure out a plan that will hopefully work for me. My numbers stayed pretty good until my week off where The WBCs tanked and then infection set in. I’ve never had such trouble with chemos until my liver started to really go down hill. Snow drop- I’m a super healthy eater and was an avid exerciser until the ascites , varicies bleeds and an indwelling drain. So I’m gonna try to incorporate walking in once I’m all recovered
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Snow-drop - my take on this experience with your MO is that she feels that with your condition mostly stable and only slow growth, you have time to try several meds. And if those don't work, new drugs will be coming out soon for you to try. I see a silver lining in her message.
Thank you for passing on the nutritionist's advice for vit D, Veggies and some exercise daily to boost immune system and white blood count. I have asked my MO for natural ways to boost wbc and he said there isn't anything natural. Grrr!
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I'm currently reclining and resting my upper (no mets) back from spending way too much time cooking and cleaning over the last five days. I walk an hour a day, eat vegetables, take my D3 and other calcium/D sources and my counts just can't hack it lately. It's so frustrating to think you are doing well and fueling yourself and then the numbers come in low!
This fatigue can be weird, though. I woke up feeling out of sorts and then was really upset most of the day for no reason. I don't feel super tired but I guess I strained muscles in thr ribs etc that just weren't used to that level of activity. I should have known from the emotional outburst it was fatigue cause it sure as hell isn't hormones!
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