After almost 7 yrs of Ibrance and anastrozole, I have the best cbc results - almost normal or normal across the board! This was my first month on this schedule. Currently, I’m taking 75 mg Ibrance.
I love seeing normal wbc, but am a little nervous that this schedule will make the Ibrance less effective (even though it was my idea after 3 months of 3 was on and two wks off due to blood counts)?
How long has anyone else stayed on this schedule?
I don't have answers to your questions but I'm curious about a few things, if you don't mind! Why were you on the 3 weeks on/ 2 weeks off cycle? Had you been on the regular schedule of 3 weeks on/2 weeks off cycle up until 3 months ago? I'm so happy for you that it's been working so well for you! It must feel good to have normal CBC results.
I started out almost 7 yrs ago on 125 on the regular schedule: 3 wks on/1 wk off. When the wbc could recover on the wk off, we switched to 100 mg (at about 2.5 yrs). When the thing happened with the 100 mg, it was worse, but my dr had a family emergency and nobody would make the change. So I had a recurrence that was caught early and the lung nodule that we’d been watching double for years finally showed as a metastases, we switched to 75 mg. Starting 4 months ago, my cbc wasn’t recovering in a week, so it kept turning into two weeks off.
By recovery, I mean that the counts were still lower than normal but in range for a patient on Ibrance. Yesterday’s results looked very normal (in almost every way).
Hi
Again, I’m sorry I can’t answer your question, but I am very encouraged to hear that you are doing so well with Ibrance.
I am from the UK and have been on Ibrance and letrozole since March 2020, I too suffered with low counts so dropped to the 75mg dose and I still couldn’t recover. I have been on a 3 week on, 3 week off cycle for most of my time on these drugs, and am Stable with near normal bloods. My neutrophils are still under normal range at times but over what’s accepted on these drugs. I’m very curious about your 5 days on and 2 days off cycle. Do you still get the normal side effects or are they easier to cope with, as in tiredness and the stresses the drugs put our bodies through? I have heard of this cycle regime in the USA before and have talked to my oncologist, but she won’t try it as it’s not licensed to be used like that over here.
Good luck and long may you continue with your great response to treatment. 💕
I read here that other people tried this schedule. I feel great and less fatigued. I’ve been anemic for 7 yrs, on this sched, I’m not anemic!
That’s fantastic! 🙌
I am so happy this treatment is working for you and glad you have been able to do well for almost 7 years with these meds. I hope this new protocol works well for you for a long time. Sending you hugs and prayers.
I was on Ibrance for 6years at 100mg. 3 weeks on 2 weeks off. Did stop working last month. Now being put on Truqap with many issues
Mariootsi I will curious to know effectiveness of Truqap and the side effects as I am going to have to make a decision on the next line of treatment soon.
You certainly had a long run on that regimen!
After my recurrences, my dr has kept me on the same regimen with the lowest dose of Ibrance. He/we feel the recurrences happened because I had to take too much time off Ibrance. Most drs, if not all drs, would have at least put me on a serd, but he thinks I can last many years on the combo and maybe the schedule will help that.
I’m interested in hearing what will they will change after Truqap.
Best wishes
I read the posts all the time and always uplifted by the unbelievable research, knowledge and wonderful spirit of all members.
It is interesting that the doctors appear to allow the 2 week off cycle regularly as needed. I am on kisqali and was on Ibrance briefly, both requiring a 2 week off period to reach the desired neutrophils . Now I am getting ready for cycle 8 and my doctor reduced the dosage of kisqali to 400 mg hoping the 7 day off regimen will be better. He is following the drugs protocols even though my Scans he says are stable, with the tiniest growth in one nodule that he says is below the point of concern.
I really don’t want to get off this medication.
When you all test for the neutrophils, do you do it on day 7 of the vacation? Or do you test on the next day?
I wonder if that makes a difference?
Also how strict are you about timing taking your medications everyday. I am very strict and take them at 8 am every morning. Would an hour or two matter?
I guess I should have just posted this response.
Worrying that my neutrophils won’t pass muster next week.
I have a similar issue and some questions. I switched to Kisqali after two cycles on Ibrance, just because this new medication seemed worth trying and I had barely started Ibrance. I am going be be starting my 8th cycle and switched to a lower dose of kisqali for the same reasons, low neutrophils. Hopefully this will enable me to be on the 3 week on and 1 weeek off regimen. But are you saying that the 3 week on 2 week off cycle has been successful in keeping your cancer stable ?
Hi, Merma. Hope you continue to show stable results. I have been on 75mg Ibrance with this same 3:2 schedule. I’m on Letrozole as well, so not sure what the difference in the HT would do, but I’ve remained stable for 2+ years now. My oncologist decided this Ibrance schedule would be best because we were caught in that same dance of showing neutrophils too low to start back after one week off. After the two weeks off I’m still low, but just at 1 lets you start up again. I was reticent to move to the schedule as well, feeling defeated, and worried that it would not be as effective, but my MO noted that in fact the Letrozole was doing the heavy lifting, I thinks that how he put it, actually, so let’s stay positive and see how things go. All good so far. Wishing the same for you,
I have been on Ibrance and letrozole for 7 years mostly at 3 weeks on and 1 week off. Just found my cancer has spread with four new places in my bones and two spots on my liver. Had liquid biopsy done and will have a Fes PET scan this week. It will take two weeks for results but these tests will help determine the next line of treatment. I’m curious what the future holds for me. Sending positive thoughts and prayers to all of you.
Sorry to hear about your recurrencea.
Some doctors would switch to Veranzio and a SERD, I think. It depends on the test results if you have a new target. They have a bigger arsenal than when we started. Please keep us updated.
Best wishes.
I hope your oncologist will switch your meds to Kisqali (ribociclib)and letrozole because research indicates this is the most effective regime once breast cancer metastasizes. I have been taking it since 2019 with excellent results (cancer markers in the normal range). Two years ago, I switched to a schedule of weekdays only (5 days on, 2 days off), and that works well to keep my neutrophils close to a normal level. I am 78 years old if age makes a difference.
How did you get your doctor to do this? The protocol doesn’t suggest this and my oncologist at Stanford seems to want to try 400 mg. Now.
I simply did this on my own. My oncologist had me on regular lab work which is stored on my Saskatchewan medical account so I was able to monitor the results. I have also reduced the amount of Kisqali I take to an average of 400 mg, weekdays only. Since none of these meds are normal in the body, it seems to me, the less, the better, as long as the cancer is prevented from growing. My oncologist (an older gentleman unconcerned about being "the boss") now knows what I've done, and approves the results.
Well thanks for the quick response. I hope the dosage of 400mg a day on the prescribed regimen works because I am not brave enough to make that judgement. And my husband would have a fit. 😬
It's your body, the only one you have! My guess is that you'll find the 400mg dose works well. Since your oncologist is happy to put you on the lower dose, my guess is that s/he will be happy to let you try the weekdays only regime to give your neutrophils a chance to recover to normal levels.
Well let’s hope that the 400mg dosage works.
I think the current cdk 4/6 change is Veranzii because it is taken twice a day with less cbc issues. But it does cause diarrhea which won’t work for me, since I’m a swimmer.
I couldn't find "Veranzii" on the Internet...
Oops! Misspelled it! Verzenio - sorry.
Comparing Kisqali vs Verzenio
"Kisqali has an average rating of 8.6 out of 10 from a total of 26 ratings on Drugs.com. 84% of reviewers reported a positive effect, while 4% reported a negative effect. Verzenio has an average rating of 8.1 out of 10 from a total of 23 ratings on Drugs.com."
Kisqali vs Verzenio Comparison - Drugs.com
I pray your next treatment will be what we all want, a cure Amen✝️😇🙏
My Dr is in UCLA. I have metastatic endometrial cancer. He was one of the clinical trial drs for Ibrance when he was treating bc. I have the same profile as women on the hormonal pathway in bc, so he put me on it in 2017 while someone researching it with ovarian cancer patients. I am the last one standing of that group.
I say this because of the two recurrences last fall, only one was a true recurrence. The other, in my lung has been there since I was dx in 2015. It just lit up on the pet/ct scan after I had too many breaks on the Ibrance.
I’ve done some research which was not definitive, but brought up the possibility of a 5day/2 day schedule. He was willing to give a try to see if we can prolong this course of treatment as long as possible. I have suggested that we switch back to three week on and 1 week off since my counts are so good, but haven’t heard back.
My Dr really thinks out of the box and treats me like a partner in my treatment, so I am very lucky.
I haven't been on your schedule, however, I have been on the same recommended schedule for 6 1/2 yrs. of 3 weeks on 1 week off Ibrance 125 mg with 4 wks Femara 2.5 mg .
No progression, stable MBC in bones. Labs are good. Tumor Marker in normal range the last 5 months straight. Usually in normal range going over 1 -2 points every so often.
I drink a lot of water, no alcohol, I cook my own food and eat fresh food 85% of the time. I do keep sugar at a low with glucose anywhere from 105-98. I control it. The high is when I splurge on purpose and love it.
I keep a steady 70 -80 % dark chocolate as a daily treat,
Small portions are key.
I never eat out. I'm never sick, had my 2 J&J covid shots never had it. I don't take flu shots never have.
I don't take any other prescriptions other than my Adderall that I have been taking for years.
I have made it clear that I cannot take generic drugs because they throw my personal chemistry off.
My last labs this month my WBC was 4.9, RBC 3.4, Tumor Marker CA-15-3 is 35.5.
I am still working at loosing the hormone weight gain, from the chemo meds.
My bones are not designed to carry my weight and as I age now 66 it's noticeably painful off and on.
Staying positive and hopeful, having some success with eating my last meal 4 hours earlier and will have a small salad if hungry before bed.
Hope I provided some new ideas.
All the best,
Sue in Virginia
Thank you!
Hello Merma, You must be so pleased with your results, I am on the same 2 meds except my Ibrance is 125mg, I have been on now for 2 1/2 years and my results are perfect so my onchologist says, white cells low but still in the normal range. Red cells are enlarged but not causing any problems. I am so grateful for the Ibrance because a year before I started the cost was $A4200 a month, now just $A 32 a month. I am very tired in the afternoon and try not to shedhule too much in the morning, just my energy levels I wish I could improve. I must say it is good to hear how other ladies are travelling, so thank you so much.
I swim 3 to 4 miles a week with two masters swim teams and a masters artistic swim team. Been pretty good managing the fatigue. I do think exercise helps.
That's Fantastic! Have you been sick with a cold being exposed to your team mates?
Nope! Chlorine kills germs. The pool is my happy place. I even meditate about swimming when I can't get to a pool.
That's gread news, gives me something to consider.
However, my YMCA does have a lot of children in the pool, does your pool get that kind of pool traffic?
This may sound hard to believe, but I haven't been sick since 2008 after having the only flu shot I ever had, it was required to substitute teach at the time.
My vigilance avoiding crowds, gyms, pools and restaurants has kept me remarkably healthy. It has to, there is no one to take care of me but me.
By avoiding trafficked locations where bodily fluid is present with all of the different types of covid germs and recovery coughs floating around, I may have to wait until a miracle shows up from an invite to a private pool.
But hey, good on you for being able to have that wonderful experience.
Staying free of contracting the slightest cold and free of additional prescriptions for being sick, clearly has paid off with being able to remain on the same medication for 6 1/2 years with no progression of my DeNova MBC in my bones.
Thank you for reminding me that the Chlorine has kept you safe from being sick.
Wow! Well since 2008! Very impressive!
I’m in LA, so we have a lot of outdoor pools. All the studies about swimming during COVID, showed that chlorine made it safer. Most pools limited the number of people in the lanes, and many still do. I don’t hang out in the hot tub after my swims, though.
As bad as my neutrophils had been, I rarely got sick unless my little granddaughter gave me something. Even when I was teaching 2nd & 3rd grades, I rarely got sick. Fatigue was always there, though.
Never been to LA, sounds like a dream to me. Outdoor pools! Love it!
I take a lot of Vitamin D, my monthly labs for D reflect how much I take. If I take 4,000 to 5,000IU a day my did will be 57.06 ng/ml.
Taking 10,000 IU my labs are for D 76.49 ng/ml to 89.14 ng/ml
Really not sure of the D impact on my WBC labs because from 2022 -2023 my WBC labs were just below the normal rage between 2.2 10*3/ul to 3.6 10*3/ul.
My main area of concern with my labs are the impact that Ibrance can have on my MCV (Mean Corpuscular Volume). my oncologist told me if the MCV gets over 109 consistently I may have to look at adjusting the Ibrance.
It's been remarkably low when I started on vitamin K going down to 102 from a steady 104 - 105. Then you get these out of the blue no rhyme or reason spike in a lab going from 102 - 104 to 107.
AAs you can see I'm micro nerdish into my labs which helps me monitor my diet and personal chemistry that I believe keeps key aspects in balance for living a long life with MBC.
In closing, I mastered my sodium a long time ago before my diagnosis, it's a steady monthly 140 to 139 mmol/l.
California Dreaming of outdoor pools will be a nice image to think about.
It’s so good that you are on top of all your counts. It makes you a better self advocate.
I take vitamin d also. In the summer, when I’m in the water for longer, I take less. My levels get checked seasonally.
Hope you can find a place to swim.
Your the best Merma, thanks for the encouragement and inspiration.
I may just challenge myself to visit the beach finding an area where the walk is short to the ocean.
Just standing in the ocean up to my thighs will rejuvenate my spirit and longing for a pool.
side note: I'd go crazy if my labs were done seasonally.
I have been on Ibrance and anastrazole for almost seven years. My blood work floats along in its own “normal” ranges. It is what it is, but I can and will live with that. My dosage is 125 mg so best wishes with the 75- I’ve been fortunate that the 125 still is working and I am on the 21 days on and seven off for the whole time.
It is interesting that you can do the 5 day on 2 day off cycle. I heard about that cycle and asked my oncologist if I could try it and they said that they don't do that in Canada. So I am still on the 21 day on and 7 day off cycle I get very tired by the time my 21 days are up. But I also have been NED for a couple of years so I shouldn't complain. Good to hear you are doing well. I think Ibrance is - for many of us - a miracle. Hugs Marlene
Funny, a Canadian research study was what I read! It was inconclusive though. Not really much help for decision making. We’re just trying to keep me on Ibrance for as long as possible.
All the best with Ibrance. I have been on it for 65 cycles. I am just starting Cycle 66. and I have had super great results. I am 81 years old so I am very grateful to our oncologists that take care of me. Have confidence Merma and take good care of yourself with diet and exercise. Get lots of sleep and even take afternoon naps. Let others take care of you as much as possible. It will help you to heal. Cheers Marlene
Glad to hear you are doing so well! Have you been on the 125 dosage the entire time?
Thank you. No, I was on 125 mg for about 2 and a half years, 100 mg for 3 and a half years, and now on 75 mg for almost a year. Dr thinks I’ll be able to stay on this for many more years. Crossing my fingers!
hi merma! When I was on IBrance for over 3 years, my biggest issue was the low neutrophils….white blood cells…I did a lot of reading of different studies about this alternate dosing for IBrance…. I stayed on the 125 mg but did the 5 on 2 off schedule. It worked really well until my cancer mutated and I had to go on Piqray . I have a strong feeling about how meds are prescribed with the highest tolerable dosage…I guess as long as it didn’t kill you 😏. Apparently your weight and height doesn’t go into the equation…but then there’s the consideration for the disease load..how much cancer you have. If you are doing well with tumor markers and no progression, you can consider doing the 5/2 dosing. In my opinion, I had a good quality of LIFE while on it. Best wishes for healing and recovery…🙏
Hi Dragonfly2,
I’m thinking of seeing if after 2 months of the 5 day on/2 day off with good blood counts, I could go back on the regular schedule until the blood counts go south again.
I just want to stay on this regimen for as long as I can. I am being treated for endometrial cancer. Even though I have the same mutations and hormone positive/her2- profile, we don’t have access to many of the meds used in mbc. I was just lucky that my dr was in bc before and was doing clinical trials for Ibrance. So, it was an accident of geography 7 yrs ago when I got put on this regimen. Now I get 2nd opinions with a bc Dr and follow bc research because my Dr isn’t as up to date with that any more.
This forum has really been a lifesaver for me because I have been on a very lonely journey for 7 yrs. EC patients are just getting started on this treatment path.
Mom’s MBC Diagnosis - Ibrance & Low Neutrophils 
Ibrance/ letrozole schedule change
Was anyone on this list “cancer free” until her initial diagnosis at stage IV? Also do you feel worse on the 7 days off?
Neutrophils dropping 
