Has anyone lowered dose of Ibrance an... - SHARE Metastatic ...

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Has anyone lowered dose of Ibrance and felt better?

Ssm2019 profile image

I think everyone’s body copes differently with each medication, my mum recently ended up in hospital with a severe infection high temperature really sick, had two courses of antibiotics before she got slightly better was due to a mouth infection from side effects of Ibrance, the tiredness was the whole month cycle for her and each time no taste in foods or drink she has been off Ibrance for 3 weeks due to still having a sore in her mouth and she is feeling much better her mouth is healing and her taste has returned onc said she is going to lower the dose of Ibrance to help with side effects said it is no less effective than the higher dose she is on said it is about managing her own body’s ability to take the strength of the drug and says it’s still in her system when she restarts the Ibrance that her body isn’t healing as it should, hopefully the new dose and regular mouth care will help with the sores and fatigue. She is the type of person to get on with things and doesn’t like to cause a fuss but you must tell your onc about every thing that gets you down as there may be a solution quality of life is very important!

Has anyone been in a similar situation and does a lower dose make a difference?

22 Replies

I had to go from 125 mg down to 75 mg because my neutrophils dropped to a dangerously low level. I felt much more fatigued on the 125 mg. I have not gotten any mouth sores from it, so I can’t let you know if that will help. I hope she feels better soon. I’m sure that must have been very scary.

Ssm2019 profile image
Ssm2019 in reply to KMBL_

Thank you for your reply I am hopeful this will help with her side effects and still continue to contain her tumors! Hope you are doing well glad it worked for you

Nmartinez15 profile image
Nmartinez15 in reply to Ssm2019

Me!!! They also change my schedule to 3/2 because 75mg still lower my count. My MRI and CT show non progression so Doctor was happy that I resist to change the med.

I've been in treatment (Ibrance/letrozole) for 20 months. Started Ibrance at 125mg and had low neutrophils, thrush mouth, and fairly painful GI problems. Dropped to 100 and then to 75. Still stable (I go for my 3-month scans on 11/18) but side effects have improved. Neutrophils are in normal range, no thrush, and GI issues are mostly resolved. I take extra magnesium daily which helps with stomach problems. Have lost a lot of hair which has not grown back on lower dose, but oddly, still have eyebrows and eyelashes, so with a wig, I still look pretty much like myself.

Ssm2019 profile image
Ssm2019 in reply to Southside25

Thank you for your reply makes me feel better knowing that reducing the dose may help with these side affects I was so worried she looked terrible yesterday was the first day she looked back to normal, I’m glad your feeling better from it too and I hope your scan goes well keep me updated on your results, it’s mad my mum has lost her eyebrows and eyelashes but still got her hair it has thinned a lot tho so she wears a headband to hide it and it looks good.

Do you take your own magnesium supplement? I have give my mum elderberry syrup (sambucol) for her immune system seems to help.

Southside25 profile image
Southside25 in reply to Ssm2019

My immune system seems fine; neutrophils remain in normal range, and I have not been sick since starting treatment. I take one magnesium supplement daily which I think is 250mg. It really makes a difference in alleviating stomach problems.

Went to 100 my due to low and and sever infection inplugged saliva gland. On 100 for 4 years and stable. Minimum progression noted let month so upped to 125 my. Back in4 weeks to see ineffective.

Ssm2019 profile image
Ssm2019 in reply to Lordmandy

Wow 4 years that is great! And so glad the side effects eased for you hoping my mums will too, you have done so well good luck for the future

Lordmandy profile image
Lordmandy in reply to Ssm2019

And to your mother as well! Prayers for a cure. We are so close! There are many drugs out there, many new ones on the way, and clinical trials too! #LivingIntoTheCure!

Went to 100 after mouth sores and it has been better than 125. But I still feel better on my week off!

I hope your Mum feels much better soon. I don't have any experience with lowering dose but many on this board have and done quite good. Best of luck. Blessings Hannah

Ssm2019 profile image
Ssm2019 in reply to hdhonda

Thank you for your kind words, glad you havnt experiences them they are awful keep fighting! Xx

I went from 125 to 75 and it is much better. Dropped dose due low neutrophils. I have never had mouth sores.

Thank you and glad it worked for you keep going an take care xx

Hope mom is getting better. I could not tolerate ibrance at high doses; put in 75 and it was much more tolerable.

Efficacy is same. Had to stop because I was having allergic reactions to it but it did work.

Ssm2019 profile image
Ssm2019 in reply to Francesca10

Thank you she seems much better now but at the min she is not talking Ibrance so we will see when she starts again next week. She is also having a ct scan to see if it is working for her fingers crossed. Glad it was better for you

I went from 125 to 100 because my neutrophils went too low. It took about 6 weeks to adjust but is better on 100mg.

This is an interesting study concluding that a lower dose (100 mg) is as effective as the standard dose, with fewer side effects. This and similar science-based information is in my book, "The Insider's Guide to Metastatic Breast Cancer," which is also available in a complimentary .pdf. To find out more, you are welcome to visit insidersguidembc.com/about

A phase 2 study that randomized 72 HR+ HER2- MBC patients 1:1 to receive Ibrance in either a 125 mg or 100 mg dose in combination with physician’s choice of fulvestrant or tamoxifen concluded that the 100 mg dose was associated with a lower rate of grade 3 or 4 neutropenia. Furthermore, both Progression Free Survival and clinical benefit were the same in both groups. Dr Hope Rugo was the lead investigator. From: targetedonc.com/news/reduce...

Ssm2019 profile image
Ssm2019 in reply to Bestbird

Thank you for sharing this with us this is wonderful news I will show my mum as she was worried the drug wouldn’t work as good if she lowered it I am so please and she needs quality of life! I will also read this book sounds really interesting and will help us understand this a bit more thank you :)

Yes! I feel better and not more mouth sore. I can now go to the gym and not feeling like 80 years old lady!

I became very fatigued after a year on Ibrance. My oncologist dropped me from 125 mg to 100. I was still fatigued so she had me take a month off of Ibrance. She then dropped my dose again to 75 mg. My counts are much better now and although I don’t have the energy I did before diagnosis I feel better. I recently had scans and no progression so she has me staying on 75 mg. I hope this info helps you and that you stay safe and well. -madlyn

Hi when I went down to 75mg the sores in my mouth are very rare now ..but I do fatigue still if I over do things I'm out of it for the rest of the day

Best wishes

Cheryl

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