IBRANCE (75 mg) Long Term (over 5 Years)

[kparekh76]

Hi! Anyone on here been on Ibrance for more than 5 years? My oncologist and I are considering playing around with the dosing. Currently, I'm on 75 mg (for years since almost the beginning, as I requested because it was too much for my 5'2" 95 pound frame). I haven't had evidenced active disease in years. We thought about maybe 14 days instead of 21 days, and other permutations. Anyone else with creating Ibrance dosing? Thanks!

[Nocillo]

If it’s working, I wouldn’t change a thing.

[kparekh76 in reply to Nocillo]

Respectfully, I disagree. I was diagnosed with MBC 9 years ago. I haven't had active evidenced disease in years.

I had actually advocated for the Ibrance reduction from 125 mg to 75 mg (looking over research studies in Asia, which are more similar to me since I'm Indian-American). My doctor flat out said no, and I had to write a letter to the practice accepting the liability of reducing the dose. I believe in the 'Right Dose'. Here's an article I co-authored with a number of patient advocates and leading oncologists (head of breast oncology at Harvard, UCSF, Emory, etc.): ascopubs.org/doi/pdf/10.120...

It's about finding the dose that is right for you, not only about going with the guidelines which will always be around the MTD.

[wandererwonderer in reply to kparekh76]

Thank you so much for posting this paper. I'm a doctoral researcher in medical innovation and these kinds of discussions regarding how "correct" patients are, when offered choice, need to be expanded into normal pt care... the problem is currently patients are rarely given the opportunity to choose, which limits the research.

Rock on with being a trail blazer!

[kparekh76 in reply to wandererwonderer]

Patients don't feel empowered to discuss dose reductions with oncologists, because oncologists always tow the MTD party line. In fact, my own oncologist made me feel extremely guilty/shameful for making the dose reduction choice that I did (as if I was doing something that was wrong). I come from a doctoral background as well, and she literally said to me, "Aren't you data-driven?"

The problem is the data. Standard dosing is always the MTD which is based on clinical trials that don't represent the entire MBC population (despite what they say). The average MBC patient is a 62 year old white woman with a BMI of 32 and makes up the composite of these clinicial trials. When I was diagnosed, I was a 38 year old South Asian-American woman with a BMI of 18. The truth is I am simply not represented in the trial'ing of new drugs.

The Right Dose considers a multitude of factors that are important: race/ethnicity, age, BMI, indolent/aggressive disease, line treatment, quality of life, etc. Take a look: therightdose.org/

[Hazelgreen]

For sure, reduce cancer meds as much as you can! They are so hard on the body, especially energy levels. I don't know your age, but I wonder why you didn't reduce the number of days you took even the lowest dose of 75 mg after your cancer markers were in the normal range for six months or so.

Your oncologist can have your cancer markers checked every three months to make sure they stay in the normal range on reduced dosages. Perhaps, after all this time, you don't need to be on any cancer meds.

If you find that you do need to stay on cancer meds, there is good research that indicates Ibrance works equally well on a 5 days on, 2 days off schedule. This allows your body every weekend to recover from the negative effects of the medication. Ask your oncologist to check out the 2022 article in Nature on this topic.

I have found a 5 day-2 day schedule works well even with a much heavier dose of Kisqali than your lesser dose of Ibrance. I've been taking cancer meds since February, 2019.

Best of luck, Cindy

[kparekh76 in reply to Hazelgreen]

I was diagnosed with MBC de novo in 2015 at the age of 38. I am now 47 and haven't had any active evidenced disease in five years (since I started Ibrance in 2019). Unfortunately, I've never had cancer markers. From the beginning, all of my cancer markers are in the normal range.

Yes, I have a friend on that schedule. Technically, it would be 8 days off of Ibrance (as opposed to my current 7 days off of Ibrance). But I love my week long-off break.

I'm wondering about other creative permutations!

But thank you for your comments, and maybe I'll give 5-2 a try!

[OceanBreeze3]

I stopped taking Ibrance about 2 years into diagnosis. My Oncologist (@Dana Farber) said the most benefit is within 2 years, so if you can at least take it that long. I've been on Letrozole only for the last 3 years. I have been NED for 4 1/2 years. Im glad because I did not like how I felt on Ibrance, and I did not like the expense. I was happy to rid my body of another drug. You have to decide what is right for you.

[kparekh76 in reply to OceanBreeze3]

This! I was diagnosed with MBC in 2015 and I began Ibrance & Letrazole in 2019. I haven't had evidenced active disease in 5 years (NEAD). My oncologist wonders if I would be one of the people who would be fine simply on Letrazole. We are not quite ready to pull the plug entirely, but toying with Ibrance vacations. I also agree with you, and want to limit medications. I cycled off Xgeva in 2022, and instead weight train & daily yoga, take protein, take supplements, etc. to keep my bones healthy; it's working.

Thanks for your feedback. It's really nice to meet someone with this experience.

[Greatday2 in reply to kparekh76]

Hello, can I ask what supplements you take?

[kparekh76 in reply to Greatday2]

I take a very functional medicine / precision medicine approach to healing, and therefore have consulted functional medicine/naturopaths who have ran multiple labs, tests, etc. on me before making specific recommendations. I'm happy to share, but I really think that what is right for me may not be right for you. I suggest you consider doing the same.

But to answer your question, I take:

Vitamin D, Calcium (ad-hoc), Vitamin B12, Biotin, Magnesium, Vitamin K2, Omega 3, Alpha Lipoic Acid, Co-Eq 10, Zinc, etc. I will now take Lion's Mane.

In the past, I've taken Iron, as well as Ayurvedic (like ashwagandha, shatavri, and triphala)/Chinese herbs.

I'm also vegetarian and gluten-free (hence things like B12 and Omega 3). It may not be necessary for you. It's been 9 years for me, so it really ebbs/flows based on my situation!

[Greatday2 in reply to kparekh76]

Thank you for sharing! I like to ask, but I always research things before I take anything. I agree that what is right for one might not be right for another. Again, thanks!

[hopehope67 in reply to kparekh76]

Yes, you are absolutely right. Each of us must find our own way. For example I can't take calcium and vitamin D because my blood calcium level is high. I'm interested in something else. Since you are a vegetarian, I am interested in how you manage to maintain your leukocyte level and ANC for receiving a new cycle of Ibrance. Before this therapy with ibrance, fulvestrant and zometa, my diet was full of vegetables, sometimes fish and very rarely meat. Now the recommendation of my oncologist is that I have to take proteins of animal origin (especially chicken and turkey) daily in order to raise leukocytes. I am not very happy with it and would like to make a change.

[michelangelina]

I have been on Ibrance/letrozole for almost 6 years, and have been stable that entire time. I assumed I would be on it until it stopped working. I am intrigued by the discussions I have been seeing lately about stopping or reducing. I am hesitant to do that since I have tolerated it pretty well, but am concerned about long term effects on my body. I am currently on 100mg--perhaps I should ask to go down to 75 (although I am not a small person!) If you do end up changing your dosing regimen, please post about your experience!

[kparekh76 in reply to michelangelina]

I'm so glad you are doing well. For sure, 75 mg is a very reasonable request for you and it's worth discussing with your oncologist.

For sure! I'll keep you posted! (But no worries, re: petite person. That's just my natural state, lol. There are many many reasons why people change the dosing of their medication!)

[wendle3007 in reply to michelangelina]

I've been on the same combination for nearly 3 years and was told that it would be until it stopped working or I could no longer tolerate the side effects. I've heard of people who had a break from the Ibrance (but kept on letrozole) for 8 weeks which gave their neutrophils a boost and then carried on with their original dosage.

[Light74]

I have been taking letrozole and Ibrance since October, 2016. I am still NED on PET scans. My CA and CEA are always in the normal range.

Because of low neutrophils and platelets, my dose was quickly reduced to 75 mg, but still too strong. I now take Ibrance for 3 days on, 1 day off, for 21 days. That is a total of 16 tablets. Then I am off Ibrance for 1 week. This might sound complicated, but I simply mark the tablet card with the days to take it, when I start. It is quite easy to do!

[bloomingdalechic76 in reply to Light74]

Oh wow! This is really interesting for me. Thank you for sharing.

[hurricaneheather]

original dx, Oct 2011. mets to right pluera dx with pleural effusion, July 2015. pleurodesis and VATs bronchoscopy, July 2015. treatment: Ibrance, Anastrozole, Lupron (Zoladex), Aug 2015. on lowest dose of Ibrance end of 2015/beginning of 2016. NEAD since March(?) 2016. I have been able to adjust the dosing schedule with the onc, more than once. may you make the decision that is best for your mind-body.