For those of you with horrible side effects on Ibrance!

[SunShineEveryDay]

Hello beautiful ladies,

I have studied and read every article and watched every video with regards to Ibrance and even talked to a Pfizer Rep and looked at their first, second and 3rd trial studies on their website and it appears that Ibrance either works for you or it doesn’t. No matter if you take 125mg, 100mg or 75 mg. It is an extremely toxic medicine that plays huge havoc on our immune system!

With the current three-week on and one week off schedule, a significant number of patients develop grade 3 or higher degree of neutropenia and require dose reduction and sometimes discontinuation. This potentially compromises the efficacy of the drug.

In addition, as the half-life of palbociclib is 27 hours, 1 week break with the standard 3 weeks on and 1 week off dosing schedule could potentially lead to recovery of Rb phosphorylation during the off week. Hence, the investigators propose a 5 days on and 2 days off schedule each week without any weeks off drug.

Although the cumulative doses each 28-day cycle is roughly the same with this schedule compared to conventional dosing, the bone marrow is not exposed to the drug continuously for 21 days and rather gets frequent breaks from therapy.

The investigators hypothesize that the 5 days on and 2 days off schedule is more tolerable with less frequent high grade neutropenia and dose interruption/reduction. In addition, this schedule also provides for a more continuous drug delivery to the patient since there is not a week's break in therapy, which could ultimately prove to be more efficacious.

I’m on 100 mg and this is the schedule I have been on and it has worked fabulously so far for well over a year. If my next scan comes back without progression my oncologist promised I may go down to 75 mg, which I had wanted to do from the very start! In my opinion sometimes less is more and it will greatly improve my quality of life!

Remember to be kind to yourself, love yourself!

Much love,

Miriam

[Mary115]

Miriam. Amazing research and self-advocacy!

[SunShineEveryDay in reply to Mary115]

You have to Mary! My oncologist had never heard of this! And do you think she would try it on other patients? No! Because the manufactures recommend 125 mg! All the ladies that suffer so badly daily be damned! Frustrating.

[Mary115 in reply to SunShineEveryDay]

I think that the research and self-advocacy that others have done has helped me, and I think that the research and self-advocacy you have done and written about can help others too.

[NPmary in reply to Mary115]

I have been on 75 MG for almost 4 years and concluded that it either works or doesn't just as you stated. Thanks for sharing.

[SunShineEveryDay in reply to NPmary]

Wow! That is amazing Mary!!

[Tantalon7211 in reply to NPmary]

Hi i have just about to start Ibrance .75 this week been putting it off as soon many side effects with some people I had bone nets in my hip- and had high beam radiation

Have you done well in the .75

Did it take awhile to get used to it - worried about low blood counts -

Thanks for your reply

[SunShineEveryDay in reply to Mary115]

True that Mar!

[hopehope67]

Thank you so much! After this, I start thinking seriously about taking the medicine for 5 days on and 2 days off. My oncologist is not in the mood to change therapy although at the end of the cycle I have to take a break of up to 15 days instead of 7 days!

[SunShineEveryDay in reply to hopehope67]

My pleasure! That doesn’t seem to make any sense, does it? Ridiculous. It’s your life and your body, your decision. I know oncologist mean so very well and nothing they do is malicious but if you have been on here long enough you do become extremely knowledgeable and a bit of an expert and they just do as they were taught and have always done and don’t know about other possibilities that may work very well. They aren’t well educated about nutrition and many other practices and are more focused on managing versus healing.

Much love,

Miriam

[mariootsi in reply to hopehope67]

Me too.

[DDIL1]

This makes sense. I’m off an extra week because of low WBC. My onc has people doing all sorts of different schedules on this. I’ll give it a try!

[SunShineEveryDay in reply to DDIL1]

It made a lot of sense to me! I started this schedule before I even told my onc. They certainly don’t like to go outside their box! I do what I think is best for my overal health. I cannot believe how outdated some of their thinking and believes are (like life expectancy!) and I told her so in a nice way. They should seriously starting to learn ALL healing ways and support that! Not just their drug treatment and that’s it! Like really? We need and want more!

Much love,

Miriam

[SabaAK]

Thank you! That’s what I’m planning to talk about with mom’s doctor if her scans come back stable

[SunShineEveryDay in reply to SabaAK]

You’re welcome!

[PJBinMI]

What did you find about damage to the lungs from Ibrance? I was on it, in addition to Faslodex, for a few cycles in 2016, and developed Interstitial Lung Disease and both my onc and the pulmonologist I now see immediately figured that was from the Ibrance. So, now I get out of breath easily and often, in spite of using two "puffers" every day. Hot weather is very hard on my breathin g. so, if you are on Ibrance and develop breathing problems, let your onc know that right away and stop the Ibrance.

[SunShineEveryDay in reply to PJBinMI]

Yes, exactly, that’s about the worst side effect of Ibrance and I found out about that on this support group! Same with vision problems. I’m so sorry you have to be on 2 puffers. What a drag!

Much love,

Miriam

[DDIL1]

I wonder if switching to Verzenio or Kisquali might be a better option. I understand they all have side effects. But maybe a better response to those drugs, I saw they may be effective longer. So many things to think about.

[SunShineEveryDay in reply to DDIL1]

Hi!

It all depends what kind of breast cancer you have! I’m ER+ so Letrozole (or similar) and Ibrance is usually the first line of treatment these days.

But my dear friend of 30 years had bone cancer and refused the Ibrance and was just on Letrozole, she lived for 7 years after first diagnosis.

Hope this helps!

Miriam

[mariootsi]

Thank you for all that info. I'm on Ibrance.

[SunShineEveryDay in reply to mariootsi]

I know you are Marianne. Let me know how it goes!

[Southside25]

I've heard this for years: if Ibrance works for you, it works regardless of dose. I started on 125 and had neutrophil problems and other side effects, reduced to 100 and then to 75. I was on a 5/2 dosing schedule for the last 3 years or so and had no problems with my neutrophil count - it was always low but within the standard range.

[BallerinaMel in reply to Southside25]

How low was your wbc before the 5/2 dosing schedule?

[Southside25 in reply to BallerinaMel]

Don't remember exactly. The standard range is 1.12 to 6.72. I was below the lowest level in the range, like .8 to 1.0 and had to stay off for an extra week a couple of times until the number rebounded above 1.12. Once I went on 75mg on the 5/2 schedule, it was consistently like 1.5 or slightly higher which my onc said was okay. My low neutrophils also caused me the get thrush which went away on the lower dose and 5/2 schedule.

[BallerinaMel in reply to Southside25]

Thanks. I am always around 1.0. I have been as low as .75, where I waited an extra week. I only waited an extra week one time. Thanks for your information.

[SunShineEveryDay in reply to Southside25]

Good morning!

My onc promised me if my next scan is okay, she will finally allow me to go to 75 mg. Which is what I had wanted all long. Quality of life DOES matter and it is sooo much better for our immune system which we should keep as healthy as possible!!

Miriam

[Hidden]

That is very interesting Miriam. Thank you for passing that on.I am going to mention it to my Onc when I am next in touch.

Clare

[SunShineEveryDay in reply to Hidden]

My dearest Clare,

I didn’t ask my onc, I just told her that I wanted to do that. Being on here, reading hundreds of posts and articles, you become more of an expert than they are, I swear! 🤣

As I’m sure you know, they don’t like thinking out of their box and they don’t know much about nutrition either let alone supplements and mental health work that we all must do to fight this thing! Those of us who are most active with our approach (with our doctors call annoying patients) tend to survive the longest!!!!

Hugs 🤗

Miriam

[sonycamera]

Thanks for your wonderful posting. Have not heard of 5 on 2 off regiment. I go to oncologist on June 23 and will ask. My dosage has been dropped from 125 to 100 due to extreme tired (often sleep 10-12 hrs) and low WBC and RBC. Hope June 23 blood test showed WBC and RBC improvement. my hair is thinning - any suggestions about treatment? Thanks to all you amazing survivors. Kathy

[SunShineEveryDay in reply to sonycamera]

Dear Sonycamera (you love photography I take it?) 🤣

I didn’t ask my onc, I just told her this is what I wanted to do after learning about it! It made logically lots of sense to me!! Besides most of us has Letrozole too or something similar so Ibrance is just the support to that.

I too have lost plenty of hair!! I was fortunately enough to have lots of it, so people don’t notice it too much but I do of course. Everyone can use some coconut oil in their hair after washing. Then style as usual. If you have a bit of curls, an anti frizz oil spray in dry hair after is a must!

Let me know how it goes my friend!

Much love,

Miriam

[Hidden]

I could read your post all day long. Bike rides, long walks. Oh if I only had that much energy. Your positive attitude I love also. I stay positive because that will pull you down faster than anything else. I give God all the Honor and Praise for that. We all serve a Mighty God. Have a blessed day. 🥰

[SunShineEveryDay in reply to Hidden]

Awww how sweet! I’m so sorry you have no energy at all! That’s sooo tough. :(I found that juicing vegetables hugely helps my energy, eating as many fruits and vegtables as you can muster and even if you can make your body move just a little!

I will pray for you sweety!

Much love,

Miriam