I’ve been on Ibrance/letrozole combo for 1 year now. I started on 125 mg, but dropped to 100 mg after the first cycle.
For my last 2 cycles (March and April), my neutrophils are still too low after my week off. Onc is suggesting staying on 100mg and waiting 2 weeks before starting the next cycle OR dropping down to 75mg.
Thoughts? Effectiveness of either regimen?
Susie
Ontario, CA
I think your doctor has a good plan. I'm pretty conservative when it comes to medical stuff, and I would probably opt for waiting 2 weeks, restarting at 100, and if that doesn't work dropping to 75. That way you've tried to adjust to the higher dose and you won't question yourself by going straight to 75. Good luck.
Thanks for that analogy. Makes sense. I don’t understand why after being on the 100mg dose for the past 11 months my neutrophils are not recovering in that one week span anymore....
I don’t think this drug is entirely figured out. Have you been sick recently? I just experienced one of my worst months on it, and I’ve been on it a few years. I literally could have fallen asleep leaning against a wall. Slowly feeling better. This is truly Stage WTF💕Good luck
I did have a sinus infection back in March. Had a fever of 39.3 celsius (102.7). It wasn’t treated (another long story).
But I’ve been feeling better, took a while but ok now.
Hope you feel better soon too!💕
Nstonerocks.....I love your analogies and you always make me laugh!! Thank you!!
Oh Nancy. I love your responses. You just reminded me of you and that question "What stage are you in?" And your reply, "the wtf stage." Despite how horrible this situation is that we find ourselves in, thinking of this always for some reason amuses me. You had said you would private message me your schedule or number so I can meet you one of these days. Please do when you feel up to it. Faith
I agree with you. This is still a fairly new drug and my onco was even surprised when I told her how sick I got on my first week off of Ibrance and was upset that she didn't warn me. I was in bed for almost the entire week. And then her dense PA told me he never heard of a woman getting fatigued on Ibrance. I don't think she has many patients on it. I think they say its the first line of treatment. I had CVS calling me every month twice a month when I was first on Ibrance to see if I had any side effects. I was told food would taste different. It did not but I got intense cravings. One week was ice cream, the next week was potato chips, then chocolate. I thought I was nuts until I read some other women on another board also had different cravings.
After 18 months on Ibrance and Faslodex, even having dropped to 100 mg 3 months ago, my neutrophils were dangerously low. Now I’m on just Faslodex. If I get scan showing resurgence of disease we will go back on Ibrance for as long as it takes to go back to remission.
I went to get treatment but when triaged I had a nurse who believed she could take my temperature with the oxygen equipment on my finger. She said my temp was 36.6 so she probably put me at the lowest category so there I went in with the masses, at least 60 people waiting. Sick and vomiting around me! I had a mask but was not offered a separate area for waiting. My temperature when taken again in the appropriate manner by a different nurse, was 39.3 (102.7) I left the ER to sit somewhere else while my husband waited. The protocol was supposed to be get IV antibiotics within 2 hours of ER visit but obviously that wasn’t going to happen! So after being there over 4 hours with sick individuals around and still no treatment, we left. Thought better to be at home away from all the illness (no ill feelings for any of them) and getting some much needed rest! My fever was gone the next morning, I checked in with my cancer clinic and all was ok. They had the results of my bloodwork from the night before and what was interesting was that my neutrophils had shot up! I believe it was in response to the fever cause two days later it was back down so hence the one week extension before restarting Ibrance . After the delay, my counts were back up.
So it’s possible it may have had an effect.....
Hope you are feeling better.
I have been on Ibrance/Letrozole since February 2015. The 125mg dose. My cell counts drop, but have never dropped low enough to pause treatment or change dose. I think I agree with Nstonerocks. The highest dose you can tolerate the better. Although I have not had this issue I've heard of many others needing to experiment with dosage and timing of treatment to find what works best for them.
Blessings
❤
Hi Sister3nkc if you don't mind me asking what was your original diagnoses and were you on any other treatment plans before you started the ibrance/letrozole treatment?
I was initially diagnosed with Stage one in 2000. At that time I had a lumpectomy followed by IV Chemotherapy (adriamycin and cytoxin), followed by radiation therapy. I was told I was cured, ha! In 2014 I was diagnosed with Stage 4 with mets to left lung, not far from primary tumor site. My pathology was highly ER+ and I was an ideal candidate for Ibrance which had just been fasttrack approved by the FDA. I began that treatment (with letrozole) in late February 2014 and since the stage 4 diagnosis have not had any other treatment.
Blessings
I am highly er+pr+hers2- at the present time I'm on letrozole alone so I figure if anything more shows up they will add ibrance . Do you consider your quality of life good taking the top dosage of ibrance with letrozole? Do you get a shot of anything else with this combination or just ibrance/letrozole?Blessings to you also!!
Fatigue is a very big issue. I ended up retiring early (as a Registered nurse.) There is no way I could give 100% to quality care 100% of the time that nursing requires. Honestly, I was not sure at that time if I would retire permanently or take leave. I haven't returned to work because of the fatigue. My cells counts have dropped, RBC's and WBC's. I feel that. They are not low enough to treat or change the treatment so I just have to tolerate it. A few months ago I started getting B12 injections monthly. It has helped marginally, if at all. Maybe it just takes more time or maybe it's not going to make a difference. Not working has allowed me to rest more and take naps if I need to. I have eliminated as much stress from my life as possible and do not dwell on "cancer." Collectively all this seems to be working. I know that 4+ years on Ibrance/Letrozole with ned is a true blessing. If we can just manage to continue affording the Ibrance, but that's another lengthy post!
Blessings to you all!
A nurse trying to take your temperature with a pulse oximeter is dangerous. Please do other patients a favor and report the incident. Glad you are better. And you are infinitely more polite than I.
nstonerocks I think you are/we’re a nurse??
I’ve been back and forth thinking about reporting it but haven’t yet. I think you are my impetus to go ahead and do it.
I think I’ll get the notes from the ER visit first just in case anything could be changed on their part.
Susie
Yes. Im presently a school nurse, was an ER nurse in my heyday. I’m not out to rip that nurse, but he or she needs a serious refresher. That’s just scarey
Agree! And that’s what my sister said (she’s a nurse practitioner) and my onc nurse said the same. I’ll let you know what comes of it.
Why ?
Because she is using a fingertip oxygen monitor and thinks she is taking temperatures! The monitor goes up to 100 (100%). I've never heard of this kind of mixup. Wondering if it's really a nurse -- maybe a hospital administrator?
Oh! Wow!
I agree
She should be reported and in my opinion not be allowed near patients until properly trained
Unbelievable
Barb xx
Imagine how she’d take a rectal temp??? Shiver me timbers!!!
As a registered nurse I have to wonder if this was a licensed person.....scary thought.
I know women on Ibrance who are still working full-time one as a teacher of fifth graders and one as a nurse in a hospital. The teacher has been on it for almost 36 months and has not have had any issues with kid's germs. I think its common sense. Even if we were not on meds like this, you want to avoid people who have the flu or whatever.
That is exactly what my onc just switched me to.
100mg Ibrance with 2 weeks in between before restarting. She says I should be ok doing this.
My problem was my low platelets. Hope it works for both of us! I wish you well!
I live in Canada also 😀. My blood levels are never good. I have had to wait three weeks each cycle. Ibrance was dropped to 100 and I had one cycle that was only 2 weeks off. I have just started 75 to see if I can actually get the required dosage schedule. Although I have never been able to take the 3 on 1 off schedule there has been no progression so to me it is working. Talk to your oncologist if you are worried but trust the decision.
I was taken down to 100, too after my first dose sent my WBCs into the danger zone. My neuts have always been borderline, just high enough to get me through. Please keep us posted on your journey.
Last month my neutrophils dropped from 3.5 to 0.5 in the first 20 days of my first dose of 125mg Ibrance, along with platelets and WBC. I'm waiting for those levels to go a little higher and will try Ibrance again next week at 100mg. I also want to share that I just had tea with a friend who started at 125, dropped to 100 and has been at 75mg for a year and is still doing well on it. As someone earlier wrote, I think they are still figuring this one out. I recently read an article suggesting people with lower BMI are more likely to have lower counts and need a lower dose. As long as the marker keeps dropping I'll try to keep taking it!
When on 125, I had to take an extra week off to get my numbers up. I found an article about alternate dosing schedule which I mentioned to my onc. I'm now on 100 and on a 5/2, 5/2, 5/2, 6/1 schedule and my neutrophils have been within the normal range for several months. From another support site:
"One other thing to consider is a recommendation from a research pharmacist I talked with when I was
having difficulty with the higher doses and low WBCs/ANC-- he said, based on his knowledge of cancer biology and where Ibrance works in the cell reproduction process, it is his recommendation to take a lower dose for more days in a row and also minimize the amount of time of the medication, than to take a higher dose for fewer days or having longer days-of intervals."
Hi southside
Can I ask where you’re from? I find sometimes different countrys have slightly different protocols.
I live in Canada.
Susie
Hi back. I'm in the US. The recommended Ibrance dosing is 21 days on, 7 off allowing neutrophils to rebound. It certainly makes sense to me that taking the same amount of the drug spreading it over the 28 day period makes sense. Your counts don't fall so low in 5 days and you have 2 days for rebounding.
Sorry, typos.
"the amount of time of the medication, than to take a higher dose for fewer days or having longer days-of intervals." That should be time off the medication and longer days-off intervals.
that's good info ... I had read about others doing the 5/2 thing and it really being effective so I love hearing good news. I've not started on ibrance yet, I am trying to milk the letrozole for all it's worth. My onc wants ct's and bone scan and I've only been on the letrozole for 3 months; I wonder how long it takes to make a difference if it's going to work? any idea? God bless you and again, thanks for sharing info! <3 xo
I started off on letrozole only for one month and then started Ibrance. I literally could feel the lump change within a month or so after starting the Ibrance; it was really weird. Within about 3 months, the tumor had decreased in size and bone mets (I'm also getting Xgeva shots) remain stable. I've been on both for about 14 months and everything is stable.
Don't panic if you start on Ibrance. Although some have significant side effects, my onc. said it's generally well-tolerated. I have found that to be true. Some hair loss, GI issues and loss of taste. If my scans are good next week, I'm going to ask if I can reduce to 75mg. I've read that, basically, dose amount doesn't matter; if it works, it works regardless of dose.
Thank you! I might be way out of line, but since we have an incurable disease, I think it should be OUR decision what dose we want to take, I may switch over to palliative care because you can still seek life-saving treatments, but it is my understanding that you have more say in your treatment and greater support. <3
Hi Susie..I was on 125 for 5 months and lertroizle ..but past 2 months on 100mg and counts dropped once since..but while on 125 they dropped 3 out off 5 .. Will see how this pans out in the next few months ..Veronica.."aka" Nananewf...
started treatment in Aug 2015: Ibrance 125 mg, twenty one days on, seven days off & Letrozole, daily. by the end of 2015, both doses were too much for this body. Dec scans indicated "decrease in size and metabolic activity of multiple plural based metastases...no new metastatic disease." Ibrance dosage lowered to 100 mg and switched to Anastrozole 1mg. March scans indicated "NED." Ibrance dosage was lowered to 75mg and remained on Anastrozole. scans continue to be "stable/NED;" 1 May is next scan. mid year 2018, started fourteen days on Ibrance and fourteen days off, allowing the body more time to 'rest & digest' in between cycles. it is working well for me. the only challenge that remains is the increased susceptibility to respiratory and sinus infections after completing a cycle; seeing an ENT and pulmonologist.
hi and I'm sorry you find yourself here with us but the support is great and means so much to me. thanks to all for all you do on here! I'm writing because when I called my specialty pharmacy/oncologist, the lady told me some prescriptions for ibrance were for 14 days and I had wondered about that, how the schedule worked and now I know, thanks to you. God bless you!
Thanks Sandra. I will post an update after I report the incident.
Interesting Sandra.
This is true and as a Registered nurse I have seen many medical assistants identify themselves to the patient as a "Nurse. " It is a term that is often used too loosely. Everyone, PLEASE clarify the credentials of the personnel taking care of you, especially if something does not seem right!
I did this, it sometimes worked but l was told to switch to 75mg because l was still neutropenic every month and sometimes after 2 weeks off. Yhis past summer l got a new oncologist because though the old one seemed smart and technically goos it was like she didnt know me. The new onc has a different view he doesnt worry about neutropenia as long as the ABC is .5 or less and l only have to check the blood work every 3 months! My last scans were good - l was called stable ♥️
I too had trouble with the125mg dose of Ibrance as has lots of stomach issues plus dropped my neutrophils dangerously low so had to take almost a month off before starting the 100mg dose. Still found fatigue and stomachache a problem so am reducing now to 75mg dose. Hoping this is better. Continue to trust yourself, your body and your instincts.
Hi Charlie
Just wondering when you say stomach issues, can you elaborate on that?
Susie
For sure. Had mostly a stomachache and stomach cramps and diarrhea. This started the first day I was on Ibrance particularly with higher dose. Got a little better with lower dose 100 mg but hoping I handle the 75mg dose even better.
Keep me posted please on how you do on the 75mg. I’ve had lots of issues with changing BM and diverticulitis flare ups (2 times in past 6 months). I had been clear of any diverticulitis flare ups for at least 2 years prior to starting Ibrance.
Demand to go on 75mg!! Its all about quality of life and i have walked in your shoes and I changed the game by demanding the lowest dose! You can do it! Your health is counting on you!
How long have you been on the 75mg now? How have your scans been?
I started on the lowest dose 04/05/2019. I have only one scan at the highest dose, but research says that there is no difference in scan results by taking a lower dose vs higher dose.
If there seems to be no difference on our scans then why the difference in dosages? Doesn’t make sense??
I wondered that too! A onco nurse who has mbc said that big pharma are in charge of our meds dosage, not our oncologists, because they have to answer to pharma companies about why we want lower doses.
According to my oncologist, there is no difference in taking the 125 vs taking the 75 as far as effectiveness of the doses. So, get on the lowest dose asap and save yourself the complications from the higher doses.
how to get in for 2nd opinion? 
Need your opinion
Working with second opinion oncologist + local oncologist
