Non-standard Ibrance schedule - SHARE Metastatic ...

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Non-standard Ibrance schedule

MoUtOrWaNc profile image

Hi everyone,

Great forum and so happy I found it! I was diagnosed with MBC in my liver last summer, 19+ years after initial diagnosis Stage IIB, bilateral mastectomy, chemo, and radiation. WTF??? I had surgery to remove tumor and have no other mets that they can find .

Anyway, started Ibrance in October of 2020 and we are still staying to figure out the correct dosage. I was off for about 2 months so that I could get vaccinated for COVID, so taking a little longer to figure out because of that. My oncology team decided that rather than going down to 75 mg, they want me on 100mg for 2 weeks, then off for two weeks. They are thinking that they will keep me on this schedule if my blood cells can tolerate it.

Anyone else on a 2-week on, 2-week off schedule? If so, how is it going and for how long have you been on it?

Thanks again to all you fabulous, strong sisters!

44 Replies

Hi! welcome! So interesting to read about your different schedule...but Ive seen this in the past...some even take Ibrance for 5 days , then off for two , without any weeks off. Whatever works, I guess. Every body is different and if you can tolerate this better , then it's a win for you! My oncologist seems happy that I've landed on the 100 mg dose and can tolerate it pretty well after nearly a year of fiddling with schedules. Do you still take blood tests after your two weeks on? I want to say that eventually things may work themselves out. Just be certain to eat well, avoid excessive alcohol so your marrow can produce enough white /red cells and do consider supplements that help with inflammation.

Take care and stay positive!

Hi Drafonfly2! I love your name. Thanks for responding so quickly. I have read the study on the 5days on 2 days off protocol and will ask my onc about it on the next visit. From what I can tell from the results, folks still have issues with reduced neutrophils, but I may be misinterpreting the data. Those studies are sometimes difficult to analyze.

My onc does research and we are at a comprehensive teaching cancer center at a major university so I feel like I am in good hands in that regard. So thankful to always have been in places with stellar care.

I am on a mostly plant-based/ no sugar or processed food or alcohol diet so I am good there. Also taking the vitamins and minerals suggested and concentrating on foods and drinks that help with inflammation, etc. so hopefully that will help keep the beast underground for years to come.

I hope you are having a successful and peaceful adventure of your own. Hang strong!

Excellent! You seem to have this buttoned up with diet and supplements. Hope the continued communication with your caregivers will help you with IBrance tolerance. You got this!☺️

Dearest Dragonfly2- thanks for saying so but truthfully, I am still a bit gobsmacked about the whole thing. I have spent the last year being incredibly “strong” on one hand and pretending I am fine on the other because I have zero symptoms and feel great. In fact, I was feeling exceptionally well when I was diagnosed. It is such a weird disease for me in that way. I did initial research and then decided to just close my eyes and keep moving forward, not dwelling on the diagnosis while still living as healthy of a lifestyle as humanly possible. I have just now started to do deeper dives into support groups and more detailed knowledge about MBC and everything that goes with it. I really thought I had been cured 20 years ago so entering this whole medical world again hit me hard. Call me a slow adapter. LOL. You all have helped tremendously, so now I am on a path of renewed growth and knowledge. Yay for that!

Oh my goodness, you really nailed describing how this insidious disease can sneak in and take over your life. I had BC 18 years ago and did the whole gamut to eliminate it …surgery, chemo, radiation, and hormone therapy. I was gonna beat it. Then 2 years ago I developed a mysterious limp in my right leg, with sciatic pains….hah! An MRI showed a tumor on my iliac and now the rest is history. Radiation, IBrance and Anastrozole have put me in a good place. But I know exactly what you mean…some days I’m weeping like a fool and don’t want to buy or do anything new because…what’s the point? Those feelings usually come on when I’m around day 19 or so and lasts until I’m well into my recovery week. Now I know it’s cyclical and I’m trying to think my way through this.

I will be talking to my ONC about paroxetine for support…apparently it’s also one of those newly rediscovered meds that also have a positive (debilitating) effect on breast cancer cells.

It’s all smoke and mirrors with this disease…the chemicals are keeping us alive…and for the most part feeling good.

Love that expression “gobsmacked” because it was exactly like someone smacked me upside the head. Why do I have to be poked and peered at …and swallow poison to live. Sigh…the alternative is not acceptable.

Keep on doing what we need to do to go forward for as long as we can😉

girlsptz profile image
girlsptz in reply to Dragonfly2

Just poking my head in here....paroxetine, brand name Paxil has been around since the dogs ages and used as an antidepressant. My point being there was a time when I was nursing that it seems like half the patients or more that I saw were on that drug for it's original purpose and many of them went on to develop breast cancer. I only see limited studies showing it's potential effect on cancer cells and from a SSRI point of view I would think it wouldn't be the best option and has many side effects that most patients don't like. Physicians will easily order it....but please do some good research as I know you will on it before hand. I also think the term...gobsmacked...describes the first feeling when we are diagnosed with this disease.

Sandra

MoUtOrWaNc profile image
MoUtOrWaNc in reply to girlsptz

Hi Sandra, I agree it is always a good practice to check out everything for ourselves. Even though it can be burdensome and often confusing, having a foundation of knowledge always helps in our decisions making.

girlsptz profile image
girlsptz in reply to MoUtOrWaNc

I was a nurse for 33 years and am fortunate that I still have access to my medical literature platform so can find the actual researched data, not the stuff that someone totally unqualified and without evidence creates a blog and posts. I love reading research data actually ...I know need status.😀

Sandra

Dragonfly2 profile image
Dragonfly2 in reply to girlsptz

Thank you Sandra for the added info! I have family members on Paroxetine so I’m familiar with it…but thank you about your experience with it in the medical field. So much stuff is hitting the fan nowadays about cancer and the off-label drugs being studied. I don’t want to become one of those weathervane individuals who points at anything new and swallows it. Pheww, right now I’m in a good place…but the crying jags are depleting. I hope they don’t become a monthly visitor. Thank you again! Your medical experience is invaluable!

“Swallow poison to live.” Haha. Every time I say that to my husband he looks at me like I have six heads and says, “It is keeping you alive.” He has a better attitude than I do, clearly, but then he is not the one swallowing poison. I know you probably didn’t mean to be funny but it makes me laugh and feel connected to you because I feel the same way about the meds that are keeping us alive and feeling good. I’ve only cried twice in the last year. I think I am more pissed off than sad. I hope you can find some relief for your lows. We all feel them and you are not alone, but this is a lonely disease, as all incurable diseases are, no matter how much support others provide. This is why I’ve come to the conclusion that my MBC sisters are now my best friends! No one else can really understand. All the best to you. Keep me posted on how it goes. I may be where you are next year, two years after recurrence. Soldier on and enjoy the good days 😘

PS - when I need a mood lift, I setup a cloth on my screened porch with small items on it that are important to me, like acorns my granddaughter has picked up on our walks, a rock my grandson painted, a healing bracelet my friend gave me when I was diagnosed 19 years ago, etc. Whatever brings me joy, Marie Kondo style. I burn incense, light candles, ring my Buddhist chimes and pretend I am a sorcerer: wave my arms to the heavens and chant things I make up like “not today, not this way.” Hahaha. It works. But I am not a witch. I have no idea why I am posting this, other than it shows how many crazy ways we can make ourselves heal on multiple levels, without meds. Fun is the important part. My husband loves it and is disappointed when I do it without him. I am sure my neighbors think I am certifiable. But I always leave my own ceremony feeling cleansed and happy, so neighbors be damned.

Oh thank you for that idea. I love Marie Kondo and have tried to incorporate her theories into my life. That’s a great idea to make a feel good display…sparks joy! I have developed a very wry sense of humor that does help me and my friends cope with this situation. Yes lonely, it is. Others make plans, go places, do things, but I’m hemmed in with doctor appts, and the nagging doubt about the future. So good to see that you can do what truly satisfies you…it’s your life and you don’t have to explain it to anyone else! Blessings! 🥰

blms profile image
blms in reply to MoUtOrWaNc

I love your comments, so s pot on! And I also believe that we are mind, body, spirit and you cannot disconnect them. So, the chanting, mediations. praising, etc. are very important and things that bring your joy. For me right now, great Joy comes from my baby granddaughter, 15 months old and first grandchild at 70! Now 71 with 4 children and only 1 grandchild!! Come on guys. My two youngest are 29, just engaged, and 25 just graduated from Law school. So neither of them are married yet and young enough. But me? I am not get ting any younger or healthier! I am greatly blessed. t means I do not struggle.

blms profile image
blms in reply to Dragonfly2

Look into l theanine

Dragonfly2 profile image
Dragonfly2 in reply to blms

Wow, such an interesting supplement with all the magic cancer fighting words: apoptosis, glutamate blocker…Sloan Kettering cancer center says good things about it. And it addresses anxiety. I will look into this.

Thank you!

MoUtOrWaNc profile image
MoUtOrWaNc in reply to blms

Interesting. It is found naturally in green teas. Nice.

blms profile image
blms in reply to MoUtOrWaNc

Yes that is correct!! Also Sloane Kettering has some great research on l theanine and cancer.

blms profile image
blms in reply to Dragonfly2

Which supplements do you take for inflammation?

MoUtOrWaNc profile image
MoUtOrWaNc in reply to blms

Hi! My supplements are all calcium and vitamin related. I address inflammation with my diet - I am mostly vegan so get a wide variety of fruits and vegetables, concentrate on greens and eating the rainbow in fresh produce and grains. Also spices like turmeric, cinnamon, etc. I avoid sugar and alcohol like the plague. I have a list of anti-inflammatory/disease prevention foods that I got from this Michael Greger video: youtu.be/MqmSMunAtss

I just got his cookbook a minute ago. Thank you, Amazon!

Dragonfly2 profile image
Dragonfly2 in reply to blms

B 6, 12, and a super b complex, Berberine turmeric, resveratrol, fish oil, coq10, multivitamins, and now I’m looking into theanine for anxiety. And I take half of these in the afternoon with Amazing Grass Greens powder for drink smoothie. I hope this helps you find some good ideas for yourself.

blms profile image
blms in reply to Dragonfly2

Actually I talk all those and more, just thinking of eliminating some but haven't decided yet. Right now everything in my back aches. I really don't think its cancer related, more likely increased arthritis but bugging me all the same. And yes, I green juice an carrot/ginger/celery juice as well. I'm right there with you ladies!

Hey, what suggestions do you all have for mouth ulcers? Anything natural?

Hi MoUtOrWaNc (your name is a list of states in which you've lived?),

I can't answer your direct question...I've been pedal to the medal, 125 Ibrance, *at least* 21/28 (I've taken a few spares on my off week on occasion) for no rational reason, simply because I'm a "more is better" kind of gal... :)

So I tend to question (push back on?) any dosage reductions...

Do you mind letting us know *why* your doc moved you to the lighter schedule? You mention one reason...the vaccine...which I "get" because I'm pretty sure that the vaccine...as wonderful and life-improving as it is...might muck with our immune systems for a short while (e.g. several of us here had sharp increases in tumor markers and I, for one, had progression just after (but I did not change treatment, then stabilized, so no harm done...))...but aside from that, why reduce?

I know that there are a (very) few women who have very serious impact on blood counts, e.g. ANC's at 500 or maybe even lower. But mine have been averaging 700 for *many years*, to no ill effect...So I do question the conventional wisdom which seems to say that ANC < 1000 = reduced dosage....

I do wish you the very best with it all...

Lynn

MoUtOrWaNc profile image
MoUtOrWaNc in reply to LynnFish

Hi Lynn, good to hear from you. I was/am concerned with having to reduce my Ibrance dosage so I asked my team how many of their patients have had to go down in dosage and they said most have to make adjustments, very few stay at the 125 mg dose. So you are very fortunate that you tolerate it so well. That is awesome! I love hearing success stories. My oncology pharmacist tells me that the clinical trial results include all dosages so she is not concerned with reductions. I’m going to trust that but still like to hear of others’ experiences so thank you for responding.

My onc team gives three attempts on dosage before they reduce. My ANC drops to who knows what, but then does not come back to the 1.0 at the end of the “off” week. That is why they have reduced it from 125mg to 100, and then the schedule switch to 2 weeks on, 2 weeks off. They think that is better than going down to the 75 dosage. They suspect my body can take the dosage but not for the length of 3 weeks. My counts all are within acceptable ranges at the 2 week mark on the times it was checked mid-cycle. I am also quite fatigued on off weeks, although I don’t think they consider that when determining appropriate dosage or schedule, but I sure do. Ha! I asked to go off Ibrance for a couple of months in order to get vaccinated because I wanted to make sure I had a healthy immune response to the jabs. I have no active MBC disease they can find (surgeon took out the only known met in liver and scans showed nothing else that looked suspicious) and I stayed on the letrozole so they agreed it would be fine to be off of Ibrance to get vaccinated.

I just checked what my neutrophils were about a year before the MBC diagnosis and they were on the low side then, although in the low normal range. So who knows, maybe my body just doesn’t make them fast enough. Low ANC scares me with the delta variant going wild. After locking down and then dealing with a MBC diagnosis in a pandemic prior to vaccines (weekly trips to the hospital for scans, biopsies, surgery), I’d not be happy to succumb to COVID at this point. That just wouldn’t be very funny. Hopefully this schedule will keep my ANC decent (in case delta visits me) and also met free. I know we are all dealing with this same crazy dance so I am very grateful for this forum and for folks willing to reach out and share knowledge and experiences. It helps.

And you have a sharp eye - those are the states I’ve lived in. I didn’t realize it was so transparent. I am laughing!

Also wishing you the best with your journey!

Nocillo profile image
Nocillo in reply to MoUtOrWaNc

I’ve lived in WA and NC too!

Hi!Not 2 on and 2off but not the usual either.

I’m on a cycle of 3 weeks on and 3 off of 100mg. Seems to be working well. Doing this for about 5 months and scans last month indicated I was stable so don’t think this unusual cycle is affecting me negatively.

I have metastatic breast cancer and was diagnosed June 2019. Had been on the usual 3 weeks on; 1 off but when Ibrance changed its format, it took my white blood cells longer to recover so we made the change.

We’re all day deferent and react differently to Ibrance and I think it’s a case of “whatever works”.

Wishing you all the best. 🙏🏻❤️

MoUtOrWaNc profile image
MoUtOrWaNc in reply to Red1246

Hi Red1245- so good to hear that you have had success on this combo with a different schedule. And it is so interesting that the tablets are harder on the blood cells than the capsules. I’ve seen several postings on this forum about that. I wonder if that means it’s also more potent against the cancer cells. One thing is for sure, we are getting an education through all of this. I truly hope you continue to do well! Thanks for responding to me.

I’ve been on a 3 week on 2 week off schedule due to neutrophil issues. The 2 weeks off really helps my numbers. I was also reduced from 125 to 100. So far so good!!! Good luck to you!

MoUtOrWaNc profile image
MoUtOrWaNc in reply to Nocillo

So glad to hear you are doing well on that schedule! I asked about staying on for three weeks and off for 2 but for some reason they didn’t think my body could do that. Maybe it is the accumulative effect for me because I can initially handle it but as time goes on my counts drop more each cycle. Seems like there are several creative ways the oncology folks get this drug to be effective. They are smart folks so I am glad they are experimenting. Everyone needs something different. Here is to your continued success, health, and happiness!🙏

I think it takes a while to balance the Palbociclib/Ibrance dose

I started on 125mg 3 weeks on 1 week off

Switched down to 100mg 3 weeks on 1 week off

Switched down to 100mg 3 weeks on 2 weeks off which to date seems to be helping make sure my white cells climb back up to a level high enough to start the next dose

Apart from one month (where saw slight increase in tumour markers +6% after I had my second vaccine dose ~ which I timed for when my blood results showed my immune system was at its best after a 2 week break) my tumour markers have fallen since diagnosis by 85% and there is no indication or progression on last CT scan everything

I am also following a lot of the protocol from Jane McLelland in her book How to Starve Cancer

MoUtOrWaNc profile image
MoUtOrWaNc in reply to BigHugs21

Hi BigHugs! Sounds like you have had lots of adjustments, too. And your success is astounding! So happy you have been able to knock this dang disease back into place. Hearing these positive stories really helps us newly diagnosed folks. Thank you for sharing with me. I will check out the McLelland book. I eat plant-based, no processed food or sugars but I do eat a piece of salmon or sardines a couple of times a month. I look forward to seeing what she has to say. Thanks so much for mentioning it. Stay well, new friend!

Hi, glad you have found this site. I’m on Ibrance and Letrozole. I am on the max dose and have been on it for two years now. I have three weeks on Ibrance then a week off. My dosage has never changed in the time I have been on these meds. My bloods have always been good. I didn’t have to come off my medication to have the Covid vaccination either. Not sure if this is the answer you are looking for but hope it helps.

Hi Flowerfairies2! Thanks for responding to me. Your body likes IBrance so that is fabulous. Always good to hear of people thriving and moving on. I appreciate you answering me, and yes, your sharing does help. Hope you have continued success in this strange new world.

Take great care🙂

Hi: Just want to add a thought. Glad you found this site too. It is a wonderful support and great information. Regarding dosage and scheduling. Studies have been done on both and it appears that the dosage at the lowest amount works just as well as the highest. I have just found out from a my oncologist that studies have found Tamoxifen works just as well at 5mgs as at 20mgs. As to scheduling, if you are getting the same amount of medicine in a month, it doesn't matter how it is taken. Whatever is easier for the body to tolerate.

Cheers, June S.

MoUtOrWaNc profile image
MoUtOrWaNc in reply to 8576

Thanks June, my onc team indicated the exact things you mention so at least the experts agree. 😂. I think this once again proves that medicine is an art as much as it is a science. Thanks for mentioning this. Best to you in your journey! 🤸

Hi! I’ve been taking Ibrance 75mg two weeks on and two weeks off for 8 months due to brain fog and low neutrophils with no issues.

MoUtOrWaNc profile image
MoUtOrWaNc in reply to Shar313

Fabulous! So glad to hear you are doing well. Here’s to 2 weeks on/2 weeks off! Thanks for responding to me.

What cancer hospital do you go to?I add m being treated at Lombardi Georgetown. I also was 39 years after first diagnosis, my first 3B, bilateral mastectomy, standard 6 months chemo snd radiation, followed by tamoxifen and aromodex inhibitor for 9 years. Then MBC , first showing up in the lining of my left lung and pleural fluid. Ibrance began then faslodex for about a year. Cancer spread to abdomen, mostly liver and in some bones as.well spread around. Went back on Ibrance for a few months but cancer got much worse. Personally Saw the most resent scans at that time and knew I was in trouble. So I comfortably agreed to start weekly taxol and then xgeva for bones . Yesterday finished my 5 th Monty of that treatment. So far been doing well with it. Liver nets, tumor markers, etc all dramatically improved. I will get another bone scan after 6 months of that treatment along with another CT at beginning of September. Liver seems good not sure about bones. I have felt dramatically better on IV taxol than Ibrance so I have been happy so far with that. I am always searching for MbC ladies in this area but so far no luck and Georgetown dies not seem as together as soon with helping connect by social media.

MoUtOrWaNc profile image
MoUtOrWaNc in reply to blms

Hi blms! Wow! Recurrence after 39 years? Is that a typo? Yikes. But so very happy to hear that the regimen you are now on is working. That is fantastic. It sounds like you had the exact treatment I did all those years ago at initial diagnosis. My treatment team back then was at BJC in St. Louis. I received outstanding care. I am now at UNC in Chapel Hill, where I am also getting excellent care. I am SO fortunate that both times I was diagnosed I had easy access to stellar compressive cancer centers at teaching/research institutions. I also have access to Duke University but have not seen anyone there. My daughter wanted me to go there for a second opinion but my case is relatively simple at this point (hope I didn’t just jinx myself) and I read up on first line treatment for my type of cancer, which UNC hit on the nose, plus I love my onc. Also, I figure these oncologists who are a stone’s throw away from each other probably constantly talk to each other anyway. But it gives me comfort knowing another top institution is a 20 minute drive away if I ever need more support or second opinions.

In terms of connecting with people, it is extra hard with COVID. I moved to this area right before the pandemic hit so I have made zero friends. The last two years have been really tough in that regard, especially with compromised immune systems. That’s why I was THRILLED to find this MBC forum a couple of days ago. And my brain - I don’t even remember how I was lead here. I must have been going down yet another rabbit hole online. LOL.

Anyway, It is good to meet you! Thank you for sharing your journey with us. Hang in there and I send you the best for healing and joy.

definitely typo!! Sorry, 19 years was my remission. Now 4 years with MBS. Any suggestions on mouth ulcers beside lysine?

MoUtOrWaNc profile image
MoUtOrWaNc in reply to blms

19 years, too! So we have similar paths to walk. I have not gotten mouth sores so don’t know a lot of remedies. When I first went on Ibrance my oncology pharmacist said to keep exceptional oral hygiene (keeps bacteria levels lower) and to rinse with warm salt water if mouth sores develop. I’ve been quite fortunate that my side effects have so far been limited to hair thinning, intermittent fatigue, and low ANCs.

I was on a different schedule for a Ibrance, as well. Five days on, two days off. I found research suggesting that this was just efficacious in the long run and it gave the body a chance to recover more quickly. My oncologist was totally in support of this change. You might want to check it out? Good luck with your treatment and your healing!

MoUtOrWaNc profile image
MoUtOrWaNc in reply to IzzyZorro

Thank you so much! I will definitely talk about the different schedules and what they think is best for me. I’ll be grateful to be a a regular schedule that my body can accommodate. Glad you are doing well!

Hi MoUtOrWaNc, I had cancer in 2004 but was on infusion chemotherapy. Then it came back in 2019 and I've been on Ibrance pills since. I was taken off Ibrance for a month as I had a low blood count. I was put back on and then taken back off. After those two instances, I have had a steady regiment of Ibrance with the 1 week off, which is how it is stated on the pill package. I just received the best readings yet so I with the doctor plan to stay on the same path, Ibrance, 2 shots for my bones and 1 vitamin B-12 shot. Even so I'm researching how I can keep inflammation low until I see my oncologist next month and ask her. Cheers, -GH

Hi GH, thanks for sharing your journey with me. Glad to hear that you have figured out a workable schedule for the Ibrance. Just this week my onc reduced me to the 75mg so we’ll see how it goes. I hope I can stay on it in some form but my blood doesn’t seem to like it long term. Maybe this lower dose will be what I need. Best to you going forward. MK

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