Dose reductions: I just saw my... - SHARE Metastatic ...

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Dose reductions

Suite1000 profile image
22 Replies

I just saw my oncologist today and she agreed to lower my Ibrance from 100 to 75!

Oncologists are finally getting it. Hoping to have more energy in the future.

I also asked her about the studies that say every other day for AI is also sufficient. She seem a little hesitant to endorse that (not surprised) but she did mention that she recommends it for patient's with liver issues. We are making progress!

I am so glad I addressed these issues.

I just read an article from June 2024 that patients on lower dosages actually live longer

and there has been some movement in dosing protocals for clinical trials.

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Suite1000 profile image
Suite1000
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22 Replies
Merma profile image
Merma

it took my doctor way too long to lower my dose from 100 mg to 75 mg. The only negative thing I notice is that my hair is starting to turn gray again on this dosage!

JEE123 profile image
JEE123 in reply to Merma

haha. I'll wait for that as my hair has also turned darker.

love2golfwell profile image
love2golfwell

Dear Suite 1000, That is awesome that you advocated for yourself and that your doctor listened. Were you having issues with low blood counts or some other side effects? I hope this new protocol continues to work for you for many years. Sending you hugs and prayers.

JEE123 profile image
JEE123 in reply to love2golfwell

Mostly fatigue. Plunging nuetraphils

Oberammergaux2 profile image
Oberammergaux2

AWESOME!! Thank you for being an advocate for all of us!

mariootsi profile image
mariootsi

We have to be our own advocate

PlutosNose profile image
PlutosNose

Thank you so much for this post.

Shortly after starting iBrance 2 years ago I had to go quickly from full dose to 75mg (my oncologist was very open to it based on side effects.) After being on this dose for a little over 1 1/2 yrs with only mild side effects, I've started getting back to the issues I had on full dose. I had never heard about the possibility of going to every other day so I'm going to check with him to see if he is open to trying this.

again, thank you and much love!

Cathey

JEE123 profile image
JEE123 in reply to PlutosNose

Every other day is for AI. However there are women on here that take Ibrance 5 days on and then 2 off.

PlutosNose profile image
PlutosNose in reply to JEE123

thanks.. worth a conversation with onc

Beryl71 profile image
Beryl71

I've never had mine lowered from 125. Just a change in the accompanying meds. I haven't had side effects so I guess that's why they've left it. I'm loath to ask for a change as I don't want to play russian roulette with my so far, improved health. Have you all lowered because of a side effect?

JEE123 profile image
JEE123 in reply to Beryl71

yes, lower neutrons although still above 1. Also extremely fatigued on last week of cycle

Beryl71 profile image
Beryl71 in reply to JEE123

Thanks, hope all's ok now. X

Suite1000 profile image
Suite1000 in reply to JEE123

I meant neutrophils.

Andersl profile image
Andersl

'Patient Initiated Dose' was first discussed on here over a year ago. I think you're right, more oncologists are giving it the consideration it deserves.

Suite1000 profile image
Suite1000

I was initially on 125 and I was the one that pushed for that reduction as well. Different doctor, but same clinic.

Gmaoftriplets profile image
Gmaoftriplets

I have been on 100 of Ibrance for the last 4 years. I’m going to talk to my oncologist next week about going to 75. In January I had a double mastectomy and completed 6 weeks of radiation, received my PET scan results from last week and was told there was no signs of cancer!! I was diagnosed 7 1/2 years ago stage 4 at initial diagnosis. I never thought I would every hear the words “all clear” from my doctor!!

Liessie2014 profile image
Liessie2014 in reply to Gmaoftriplets

WoW, that is amazing , I am so happy for you , Thankyou for sharing this great news ❤️

JEE123 profile image
JEE123

curious about your surgery and radiation as that is not usually done for metastatic patients.

Gmaoftriplets profile image
Gmaoftriplets in reply to JEE123

Last year my PET scan showed the mass in my breast getting larger and lymph node involvement, after testing to make sure my cancer had not changed its original type. My doctor and I discussed surgery because I have had no progression anywhere in my body for 6 1/2 years. I meet with the surgeon and it was decided that I would have a mastectomy. She got most of the cancer but there was a trace left on the skin that is why the radiation was needed. I also have a genetic mutation called ATM which can cause a secondary cancer. I know it’s not the normal treatment for metastatic patients, but I think it was the best option for me.

JEE123 profile image
JEE123 in reply to Gmaoftriplets

Thank you for sharing. It is really true that everyone has a different journey. I wish you continued good health.

Jorgit profile image
Jorgit

More than to lower or stay on the same strength, we should be discussing to adjust regimes and dosages to an individualized level. The exposition of the drug to the tumuor, will not be the same depending on a variety of factors such as local or advanced stages, Body Mass Index, age, other chronic or acute drugs potentially interacting, other concomitant pathologies such as kidney/liver/heart disease, breast feeding, pregnancy...Medicines Optimization assesed by pharmacists in tight contact with Doctors and other Health Care professionals is paramount and should be a gold standard in common practice. Blood Test Results interpretated within time, scan images and overall, clinical response (how the patient reports feeling, weight gain/loss, new or increased symptoms, etc) are essential to evaluate how efective/secure is any drug administered.

JEE123 profile image
JEE123 in reply to Jorgit

I agree, but seems unlikely soon due to our current health system. I am still hopeful given that some are coming around on dose reduction.

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