I started my first round of Ibrance at 125mg on March 20. By day 20 my neutrophils had dropped to 0.5, WBC to 1.0 and platelets to 60. I skipped day 21 and will get blood work again next week before resuming. I assume it will be at 100mg if the numbers allow. Meanwhile I'm avoiding grandkids and most publc places, trying not to catch anything!
My questions for those who have taken Ibrance...how low have your neutrophils and WBC gone? What does your onc consider a "safe" if low level? If your levels dropped a lot, how long did it take for them to recover? This is just my 4th day off and so far the side effects have been minor nosebleeds and, this week, more fatigue. I am also on monthly Faslodex and bimonthly Xgeva. Thanks so much for sharing your experiences!
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I think the lowest my neutrophils dropped was to .7. I had to wait two weeks to restart at the 100 mg level. Another 2 week wait to start at the 75 mg level. My neutrophils at the last test after one week of rest was 1.5, the highest it’s been since starting the 75 mg dose..6 rounds or so. I avoid grandkids when they are sick no matter what since they seem to love to share their germs...there are 4 and they are 8 and under! The good thing is that 75mg works..my last scan was NED. Coming up on my next scan so I’m hoping it keeps working for a while even tho I live with nearly constant exhaustion.
That's great information, thanks! Very encouraging that you are 6 rounds in at 75mg and NED, though I'm sorry to hear about the exhaustion. I feel tired just hearing about those 4 little grandkids! Our four youngest are 5, 7, 9 and 9. I don't understand the insistence on starting Ibrance at 125mg regardless of weight/size. I'm around 130 lbs and curious if weight makes a difference in tolerance.
I’m on 125mg and had scans last week, bloods on Thursday and saw onc yesterday. Been on Letrozole and ibrance for 10 months now. Each 28 days mostly my neutrophils are a little too low to start up again. So my onc recommends I wait a few days get another blood test and usually I’m right to go again. Also often minor nose bleeds. Low ebb feeling in general, and avoid as many public places as I can. But always have face/hand whiles in my bag so I can clean my hands if I’m going to eat. Yesterday my neutrophils were .5. So going back on Tuesday for blood test. Seems my markers are good right now and I’m in a holding pattern. Feeling very grateful for new medicines. My sister was given 18 months 10 yrs ago with CUP. And I thought that may have been the way of it on the 3rd of may last year, 2018, when I was diagnosed. But then they found Breast cells in my bones. And the rest is history.
Loving thoughts to all of you here. From the newbie down under.
Thanks "newbie"! It's helpful to know that your neutrophils go as low as .5 and go back up within days. I'll let you know how mine are next Wednesday. I have it in my bones too, and liver. There seem to be lots of options after Ibrance too - stay hopeful!
Thanks Sandra! It's helpful to know that your oncologist's cut off was 1.0 for neutrophils. That sounds about right to me too. We'll see where I'm at next Wed. So glad you are doing so well on Ibrance!
Same with mine..when mine dropped below 1.0 I was put on 100 mg dose and they hover around 1.0 which is acceptable
I never worry about catching anything...go to cinema go on flights mess around with animals etc and no problem with infections...sometimes we can get a bit paranoid over this
I don’t worry about being out in the general public either. I just avoid the grandkids when they are sick because they like to give me sloppy kisses and hugs. The first year that two of them went to preschool I caught everything and I wasn’t diagnosed with MBC then! I feel bad because I can’t go give them hugs when they feel bad but...
Thanks Barb! Great that you have stayed well. I think my immune system is basically strong too and I'll be fine going out if my neutrophils get back in the 1.0 range. They dropped from 1.1 to 0.5 in one week - hoping they go back up that quickly! I also just found an article from the Miami Breast Cancer Conference last week where a doctor recommended pre-emptively starting patients with lower BMI at a lower dose. Will be interesting to see what my onc thinks about that.
I suffered low counts so lowered to 100 but still low so started having nupogen injection 3days before bloods a bit of bone pain but ok . So have been ok for the last 6 months have completed 17 cycles of letrozole ibrance xgeva . Hope your all enjoying your weekend x
When I first started Ibrance, my neutrophils dropped too low and I had to take an extra week off the drug a couple month in a row. I've since gone to 100mg and am on a 5/2, 5/2, 5/2, 6/1 schedule instead of the 21/7 schedule. My neutrophils have been within the normal range since.
Your schedule is interesting, that's the first I've heard of breaking it up that way. I'll ask my onc about it. Great that your neutrophils have stayed normal. Thanks!
I read about this scheduling in a clinical trial, and am doing this with my onc. approval. Just FYI. I go for scan in 2 weeks and will see how they look on the reduced dose. I've read on several sites, that if the Ibrance works, it work regardless of dosage.
Hi when I took Ibrance 125mg for 16 months my neutrophils was going down .05 but my oncologist did not decrease my dosage I was getting Neupogen and my WBC and neutrophils went up and restarted another cycle of Ibrance till stopped working
I had to drop to 75mg due to low neutrophils. I ended up in the hospital when I was on 125mg. Few side effects on 75mg. I will see on my scan in May how it is working.
That's another interesting way to deal with it. I noticed a lot more fatigue and nose bleeds in the first five days of my week off, that seems to be tapering off a bit now. It's so helpful to hear all these options!
I’ve been “lucky”! as regards bloods too Sandra ...my neutrophils and wbc have been fairly consistent over 17 cycles , tested at the end of my week off ibrance, (I have been above 1.6 and mostly over 2.0 neutrophyls and my wbc fairly consistent above 3.6 . Has your onc given any reasons why we have tolerated the 125mg dose ? I was wondering if it’s because of factors like our age , and also I have never had chemo or radiotherapy ...and so far I have had low volume bone mets ... I recently asked my onc if it would be sensible to reduce my dosage to 100mg , given the recent research , but she said since I was tolerating it well and the recent research is still on a small scale , she would prefer me to stay on the same dosage for now . x
Hello, I started Ibrance on March 25 and had bloodwork last Monday to find that my WBC is at .4 I was taken off the Ibrance and will have labs done this coming Monday and I’ll be curious to see how far it comes up. I have been doing all I can to avoid public places for sure. I am also on the same protocol you are on with the Faslodex which I am still getting the loading doses. I am also getting Xgeva and am getting injections every 28 days. I am also part of a clinical trial with a drug called gedatolosib. I have definitely been very fatigued. I’ll let you know how my labs go this week. Take care, Rhea
Thanks for writing Rhea, our paths are very similar! I was on just Letrozole for 15 months before starting Faslodex. I did the loading doses in February but didn't start Ibrance till March because we were traveling abroad and I didn't want to worry about low counts. I've been looking into the issue of Ibrance dosing and low counts and found two things that might interest you. This video describes how 100mg has been shown to be as effective as 125mg. vimeo.com/305498067 And this article that just came out at the Miami Breast Cancer Conference last month talks about how women with lower BMI have more issues with low counts on Ibrance.
Is gedatolsib targeting a specific gene mutation? I ask because a new drug called alpelisib (maybe they're related?)is targeted at a mutation I have and is now in stage 3 trials. I'm guessing that may be next on my menu.
I have lots of bone mets but get Xgeva every other month and so far have not had issues with fractures or bone pain, once Letrozole knocked the cancer back.
I hope your counts improve enough to have you feeling better soon. It's been so helpful today to hear from other women with so many variations in Ibrance dosing and schedules. We can all learn from each other!
Hello- Thank you for the article and video - I will check them out today. I was previously on letrozole and kisquali (Ribociclib) for about 5 months but I had some progression. My oncologist recommended this study I am on mainly for the getatolosib. The study has the 3 drugs of Faslodex, Ibrance, and the Getatolosib. The Getatolosib targets the mTOR/P13k pathways. I’ve was originally diagnosed with bc in 2010 and then MBC at the end of 2012. I had good success with arimedex for about 5 1/2 years but then had more bone Mets and also a spot on my liver. This new drug seems promising but it’s a little rough to tolerate. I’ll have to look into alpelisib. I also heard from my oncologist that there is another P13k pathway drug that should be FDA approved by around June. There isn’t a name on it yet but the studies wrapped up last December. Here is a really good resource I found for MBC metastasis-research.org/sit... - metastasis-research.org - It’s called The Metastatic Breast Cancer Insiders Guide - a lot of great info - Have a great Sunday.
Hello - Every time I read that guide I find something new - just the other day I came across a great tip for when getting the Fulverstrant shots that will hopefully help in the future with the muscle pain I get. I had my recheck yesterday on my blood work. My Neutrophils are at .7 and they will need to be at 1.0 to resume Ibrance next Monday (shouldn't be a problem). My white blood count was at .4 a week ago Monday and is now at 1.3 so headed in the right direction. Also, my tumor markers dropped considerably so that is super exciting. Hopefully, your numbers are coming up as well!!
My Neutrophils dropped to 0.5 on my first course of Ibrance - They took me off for an extra week and they came right back up - since then they have dropped each time and I have had to take a 2 week break instead of one week - they have now lowered my dose - I have traveled with my counts that low without problem. No one at U of M seems upset by it and I feel fine
Thanks, good to know you have been able to travel, and that your docs don’t seem too concerned about 0.5. I’m hoping to go to Boston in late May to visit family, friends and Dana Farber.
have you been to Dana Farber before? This is one of the places I am looking at for a second opinion - I have lobular breast cancer with mets to bone and U of M seems to just treat it like all others which as I am reading - is not correct!
I haven't yet but many friends here have given DF rave reviews and my onc thinks they are the best. I also have lobular, estrogen positive, HER2 negative with bone and liver mets.
My neutrophils drop to 0.5 every month and one as low as 0.3. I have to wait 3 weeks most months. My levels have to be above 1.0 and in the beginning my oncologist wanted them at 1.5.
Thanks Sarcie! The levels information is very helpful. I want mine to be at least above 1.0 before I start again, and hope to drop to the 100mg dose. Can I ask what dose you are taking? And have you had any issues with infections? I've pretty much self-quarantined since getting the 0.5 reading and wear a mask when I do go out. But I'm getting cabin fever! The good news is my nosebleeds have stopped after a week off of Ibrance - hope that means platelets and neutrophils are recovering.
I took 125 for 6 months than 100 for 5 months. This month I have started at 75. In the beginning I avoided everything so I didn’t get sick but I have remained healthy. While my husband and daughter had several viruses I didn’t catch any of them. It surprised me. I had a urinary tract infection last year and that was it. I wash my hands and I wore a mask on a trip to the ER. I’m not out and about much as I am exhausted all the time. Hope this helps.
Just wanted to follow up to my earlier post. I ended up taking an extra week off Ibrance. Counts were up enough yesterday (WBC 2.4, neutrophils 1.2) so I started my second round today at 100mg. All your feedback gave me confidence in advocating for 100mg instead of 125mg - many thanks!
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Our four youngest are 5, 7, 9 and 9. I don't understand the insistence on starting Ibrance at 125mg regardless of weight/size. I'm around 130 lbs and curious if weight makes a difference in tolerance.
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