Ibrance (Palbociclib)
Comments
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SerenitySTAT,
Re TMs -- curious to know if your treatment was switched as a result of rising TMs, or on the basis of a scan. Did they find any progression, or did they just start dropping?
I know everyone is different, but I'm just trying to see what other people have experienced -- if you don't mind sharing.
Thanks.
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For people worried about TM's, here is my story. I've had three MO's. MO#1 did TM's every month for a while then backed off to every 3-5 months. Very inconsistent, no rhyme or reason. They fluctuated slightly during that time but he never commented. If I asked, he would say it was not enough to be concerned. MO#2 never did them. She thinks they are meaningless. MO#3 does not do them, either. He also thinks they are meaningless. If you are worried about them, maybe you should figure out percent of rise instead of just the numbers. Look at the normal range and see, not just if they rise, but how much. I think TM's can vary slightly even when things are fine. There. I've been thinking about posting that for a few days. If you can believe someone who has had three MO's, I hope it is something worthwhile.
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HI All, happy April Fool's Day! It is my birthday, which is why my "name" on here is Aprilgirl1:) I am 56. This is my first birthday with stage IV. I should be in sunny Mexico but am "safe at home" in slightly colder than normal Seattle. To be honest, the break from work has been nice as I sell real estate and although we can do some work, most people are staying home and postponing buying/selling right now.
COVID19 - I was exposed by a client on Friday March 20th (she tested positive a few days later). I was following the safety protocol of gloves, hand sanitzer, driving seperately and I was the only one who opened doors. I haven't come down with it - was told to self quarantine until Friday 4/3 but I think I am in the clear, for which I am grateful. I am sharing this to reassure everyone that following the safety protocol can work. I will be wearing a mask next time I am out in public! I was exposed towards the end of my Ibrance cycle when my WBC has been low.
TM and onc appts: My onc's have never tracked my TM's much although they are part of my blood tests. My TM's don't seem to rise, ever. Maybe this varies by patient and are more sensitive in some people? In March my onc told me she wants to sync up my faslodex injection and start of Ibrance. I just finished cycle 4 of Ibrance. Twice I have had to delay restarting by a week for low WBC. I will take a second week off so and have my blood test, injection and start Ibrance on 4/10 or start the ibrance a few days later. I have mixed feelings about the delay but she assured me it was fine.
I really appreciate all of you and all I have learned from you - gives me so much hope! Take care!
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Aprilgirl, Happy Birthday! I am so glad you did not get the virus. I started to get a cold a week ago, stopped my Ibrance 3 days early, and am happy that the cold never materialized beyond an initial sore throat. I think we all have to make decisions to delay occasionally.
My TMs have always been in the normal range. They fluctuate up and down, but usually end up at about 11.
Happy April Fools Day to everyone. My four year-old granddaughter has been master-minding pranks all morning--it is going to be a long day!
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aprilgirl - Happy Birthday! Thrilled you've avoided getting infected. Good work!
BevJen - I don't mind sharing, but my case is unusual so I don't want others to think their TMs will act the same. There are some whose TMs have been meaningless. My 15-3 was in the normal range and then began rising, not fluctuating. As it rose above normal, my MO started scanning me. I've only had one MO, but I'm followed by a team of cancer docs and a tumour board. As it kept rising, I was switched from Tamoxifen to Exemestane. My 15-3 kept rising to over 4300% above normal, but the scans remained clear. It peaked then started dropping, and the scans continued. My CEA also rose above normal to join the party. Eventually the scans picked up lesions in my bone and liver. Too small to biopsy. TMs still way above normal. They decided to add Ibrance and Xgeva. My TMs are still dropping with my 15-3 at last check about 770% above normal. All this time I've had no pain. My MO said most people have pain when their 15-3 is about 100% above normal. I should have my CT results next week along with the latest blood work.
Edited to add chart:
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(Cross-posted). This fear of germs and going out to stores is a hard adjustment. I have never been especially germ conscious until now. DH went grocery shopping early this morning during the senior hour and said it was pretty empty and easy except for a couple people who stood in front of things he wanted and didn't respond when he said excuse me. Hard of hearing probably. Could be us someday. We wiped down all the packaging with Clorox wipes, although we did more of a once over and not a thorough job. He said he felt nervous going in the store, like he wasn't supposed to be there. We've looked into curbside pickup but there are no slots available.
My news on my recent scans was good. CT was stable and bone scan was clear, no evidence of disease. Yay, breathing easier for a while again! 😀. My MO appointment next week will be a virtual visit. I'm wondering if she will say anything about retiring. (A nurse in Radiation said she heard about it. I like my MO a lot but am happy for anyone who decides to retire.). I don't think I'll bring it up, seems like it should come from her.
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I'm just curious what other people's ANC and white blood cells are after a week off of ibrance.
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Dutchiris- ANC 900-1000 (0.9-1.0) after week off. WBC are 1.7-2.0.
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Dutchiris -- We keep a spreadsheet of my wife's blood test results. She's gone from Ibrance 125mg to 100mg to 75mg due to ANC levels. With 100mg her ANC was typically 850 to 950 with WBC 2.7 to 3.3 after a week off. She's now had 2 blood tests since switching to 75mg, and her last 2 ANCs were 1380 and 1360 while her WBC was 3.1 and 3.3.
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Dutchiris, my recent ANC was 810 after one week off, then 1350 after an additional week. I run from 800ish to 1200 ish after one week. MO is fine with me needing an extra week at times. WBC is in the 2-3 range after one week off
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SerenitySTAT,
Thanks so much for sharing. You must be very sensitive to changes in your TMs if they rose without anything showing on scans. Unfortunately, that's been my story too, and so I'm wondering when the other shoe will drop and something will actually show up. Last time (when I was on letrozole alone) it took a year for something to show up, but I'm almost to the same point in my TMs now. Was just scanned and zippo. I'm currently on Ibrance and faslodex, so at some point, I'm guessing they will move me off of this treatment --damn.
Really appreciate you sharing.
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Rosie - Great news!
BevJen - Happy to share. Rising TMs over a long period of time is frustrating. I hope they begin to drop and you can stay on Ibrance. Which dosage are you taking? I'm on 125 mg.
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SerenitySTAT,
I have been on 125 since I started it last July (2019). My numbers have been pretty good so no delays -- they really only dropped one time because I was just coming off of a virus. Otherwise fine.
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My blood counts keep dropping. I may need to drop the dosage at some point.
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I'm in MN and was still able to have my Herceptin/Perjeta today and still get my Ibrance. Has anyone in the harder hit areas from Covid had any interruptions in their treatment due to the virus, with the medical facilities being so overwhelmed?
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Thank you for responding to my question. I wa just curious if I am in line with others. My ANC is 1.08 and leukocytes 2.5.
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I'm in Montreal with almost 2100 cases. Found out today my MO is finishing a 2-week quarantine soon, but has been available for calls. My appointment on Friday is cancelled. My blood draw has been rescheduled to a less busy time next week. Hope to have a call with my MO soon to get my CT scan results, but who knows? My meds haven't been affected.
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What should I do with the information the oncologist gave me: "You have 5-10 years to live." Could she be wrong? I am de novo, very vibrant and healthy except for Stage 4 metastic breast cancer in my bones in 6 places. No organs, just skull, rib, spine, pelvic bone. Do I plan for this short life? How to process this information?
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woodlands- Sorry you had to join this club--MBC club. But this is the right place to be. Bone only mets-- not organ-- has a longer life span. You can read on the Bone Mets Thread. I will try to post the link. I have a friend that lives in my town that has bone only mets---spine and pelvis. She is doing well 7 years into this. She let me see her last scan results and they looked stable. She is on Arimidex and not on Ibrance (why I don't know). MBC is incurable, but treatable. And, Yes, it is terminal at some point. But you may have MANY years left. Each person is different. How the cancer behaves is different for all. Hugs to you. Keep reading here. You will learn a lot and knowledge is power. I will send another post with Link to the Bone Mets Thread.
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woodlands- Here ya go.
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woodlands,
Sorry you have joined the club nobody wants to be in.
I was diagnosed with MBC in 2013 and was told to get my affairs in order as I may only have a year to live. I am here now, 6 years on, every day is a bonus.
I was lucky and could afford to take early retirement. I try and enjoy/appreciate every day (not easy). This nasty disease makes you re evaluate what is important in your life; family, friends, pets, the arts, exercise, etc.. Concentrate as much as you can on what brings you joy .
I don't know of anyone on this earth who knows what the future will bring, prove your doctors wrong and live a fulfilled life. I wish you well.
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Thanks for sharing your ibrance experience. Really so good to hear others experience with this treatment. I’m praying that with increasing TM my ibrance is still effective, also that you have excellent CT results.
Dutchrisis- I’m on 125mg and my ANC runs 900-1100 after a week off. My wbc run on the low side also. The first year I did have several months were I had to wait a week to start but now I’m usually 1000+.
Woodland - you have come to a wonderful group and received some good feedback. Hugs to all!!
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Woodlands,
Trust me on this - Your oncologist has no way of knowing how long your life will be. Statistics mean nothing as only God knows how long you'll be around.
I have friends whose breast cancer mets.....lung, brain, bones, liver.....showed up decades ago. They're still here and living well!
My first metastasis was in soft tissue in 2012. My first BC was in early 1994 and each time I've dealt with it there has been a treatment that wasn't around the time before. With all the research we're seeing, imagine what will come in the next five years!
Just a little story - A woman diagnosed with brain cancer came into our cancer support center and fell weeping into my arms. Her oncologist had told her she would live four months and she had just reached that point. We talked a lot about how statistics had nothing to do with her and we prayed. Skip ahead past lots of fun times and we had a "Five Year Party" for her to which we invited Dr. Weir. (He didn't come but sent a card.) Theresa lived for eight years but she didn't die from the brain tumor. She died in a bathtub fall! All this to say I hope you'll live your life well and tell the good doctor to keep the grim statistics in check and to only speak words of the healing variety. Also..........be careful in the bathtub!
Love from PatGMc
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Went to the hospital today for my monthly labs and pharmacy (they won't mail my Ibrance so I get it all done there although I could choose another location.) All was orderly and quiet and I was the only one in the lab waiting room. Everyone kept distances and wore a mask (me too) with hand sanitizers everywhere, but I actually felt pretty safe. New window dividers were at the pharmacy with a special box for cards. I was checked three times before I got to the lab (once for fever outside and twice inside with an oral survey) However, I DON'T want this as the norm! The roads were busy but it is strange seeing an empty bay and beach. There were lots of young adults running and skateboarding on the streets (I live in a beach resort town). I am sure cabin fever will kick in soon! I just thought since I was curious how it all would be that some on you may be curious also. This was my first time outside in a month.
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PatgMc...(and the others that responded as well) thanks for those words to woodlands. I think she and others here (including myself) need to hear them once in awhile.
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Especially in these times. The Guardian ran a really unhelpful article today about a young lady with adenocarcinoma and as it was terminal she probably wasn't going to see the end of lockdown/the virus. I really need to stop reading those articles.
Woodlands - Divine Mrs M went I think 8 or 9 years on her first line of treatment, and only recently progressed. Some others floating around who post on occasion also have had way beyond 7 or 10 years. Some of the de novo brain met ladies are at 4+ years. And there are many others, like Pat's friends, who are out there living and not on this forum, with many years under their belts too. No one can say, or if they say they give a range around the median, which can include all sorts of people/ages/comorbidities etc. All we can do is make the most of each and every day.
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My quarantined MO just called tonight with my CT scan results. Nothing showed in my liver. There were sclerotic areas in my bone. He compared them to my past scans and thinks it's the bone lesions that caused the rise in my TMs. This is good news, yes? I had a little hope that it was all a mistake.
Unless the covid-19 cases dramatically improve, he doesn't want me at the hospital at all for my blood draw next week. I forgot to ask if it's ok to get my Xgeva shot at the clinic (not part of the hospital). I'll ask next week.
Cycle 4 of Ibrance at 125 mg done.0 -
Hi, SerenitySTAT,
Great news! Did your doc see new areas of bone lesions? I've been told I have sclerotic areas in my bone as well. Frankly, I"m not exactly sure what that means -- I thought it meant that the lesions were healing. So if that's the case, why would that cause a TM rise? Very confusing, but it sounds like it's good news.
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Hi BevJen - He didn't mention there were new ones. I think he would have said so if there were. My TMs have been dropping since last summer before I started Ibrance. But the scans were clear until fall. So, yes, it's been very confusing.
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Great news Serenity!
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