Delayed Ibrance

[hopefulinadks]

Has any one out there had success with Ibrance after taking only Fulvestrant for 6 months and then adding it in.? I had a delay because of my fear of Covid (I was going to NYC at the height of the outbreak there for radiation during the first 4 months) and then 2 unexpected surgeries in September and October, on my leg.. Did I wait too long to start it? My MSK oncologist warned me of that but my local oncologist has not mentioned any concerns about the delay as the surgeries were necessary (broken femur and degraded tibia). I started Fulvestrant April 22, 2020 and Ibrance November 10.

[8576]

My experience is not quite the same. Don't understand why it would be too late. I was on Fulvestrant only from Dec. 2019 to end of February this year because of surgery. Since then, I have been off and on Ibrance juggling the dosage with some breaks to recover my immune system. Now because of some slight progression in the last two scans my doctor wants to put me on Xeloda. I begged her to let me try one more dosage adjustment of one week on/one off. She finally reluctantly agreed.I really wanted to try a new idea of 5days on/2days off which according to a new trial works so much better. She was adamant she would not do this, since it is not yet published. It is the same amount of medicine in a month. Only administered in a different regimen. Pfizer has initiated the trial to test this dosage and many people are already trying it with very good results.

Good luck with your treatment.

Cheers, June S.

[hdhonda in reply to 8576]

June, I just got back from seeing Dr. Khong at Moffitt Cancer Center and asked him about the 5/2 dosage. He is against it until it has been approved. Blessings, Hannah

[8576 in reply to hdhonda]

Thanks for asking. That was nice of you. Seems most doctors are in agreement with that. Cheers, June S.

[hopefulinadks in reply to 8576]

If I recall correctly, my MSK oncologist said if I took Fulvestrant alone for too long, 6 months or so(I am borderline) the cancer would mutate around the Fulvestrant and figure out how to create new receptors and therefore render the Ibrance ineffective once started. This particular doctor passed away unexpectedly so I can't revisit our conversation. My daughter does remember this conversation quite clearly. Thank you so much for responding and sharing your story and the 5/2 information. I had never heard that. This is how we all learn from each other! Such a wonderful caring bunch.

[8576 in reply to hopefulinadks]

It seems some doctors are willing to prescribe that regimen and others aren't. There are patients in Canada and the US on the 5/2 regimen. I really don't understand the concern as the amount of medicine is the same at the end of the month. So they are willing to try different regimens but not this one. Doesn't make sense. Anyhow, most won't agree to the 5/2 until it is approved and published so we have to go with that.

Cheers, June S.

[8576 in reply to hopefulinadks]

Thanks for that information. That is very interesting and may be the reason I now have slight progression. The information on the 5/2 regimen can be found at ClinicalTrials.govunder Ibrance dosing.

Cheers, June S.

[mariootsi]

I'm not sure if the delay makes a difference, but the Ibrance and Faslodex combo is very effective! I wish you the best with the treatment and dosage schedule.

[hopefulinadks in reply to mariootsi]

Thank you so much for the encouraging message. God bless!

[diamags]

I don't see why it would be a problem. Before Ibrance was FDA okayed as a first line drug treatment, people were on Fulvestrant and Arimidex. Soon after it was okayed as a first line, it was okayed as a second line. That's how I remember it!

[Cocothecat]

You might have made a wise choice. I experience Ibrance as toxic since I have had extreme fatigue and body aches when I am on it. I took a 2 month break this summer so that I could have a summer of swimming and energy and replenishment of my white blood cells. My WBC are down again after 2 months back on Ibrance. We do what we have to do.Is Xgeva or another bone strengthener recommended for you? Might be important to ask.

Happy Thanks Giving!

[hopefulinadks in reply to Cocothecat]

Yes, they want me on Xgeva but I am so afraid of ONJ and femur fractures. I may reconsider with all of my recent bone troubles. As one doctor put it,"It's a bone hungry cancer". Are you on it?

[Cocothecat in reply to hopefulinadks]

I am except with Covid and then dental surgery I have not had it for 9 months--and my hip area hurts.

[NeverOutOfTheFight in reply to hopefulinadks]

I took Xgeva every month for about 20 months, now every 3 months. Having success with Ibrance, Femara, and Xgeva. Don't feel great days 3-5 of my Ibrance cycle (diarrhea, mouth sores, and over all yuck), but then it passes. On Xgeva, a day or two after the shot I ache like I am getting the flu. Advil helps quite a bit. Then I feel ok the rest of the month as long as I eat ok. Junk food wrecks my belly.

[hopefulinadks in reply to NeverOutOfTheFight]

I was told by the oncology pharmacy that I can't take Advil with Ibrance which is unfortunate because it was helping some of my body aches that Tylenol doesn't help. I should revisit this with the doctor. Thanks.

[NeverOutOfTheFight]

I had to delay Ibrance for 5 months and didn't have any issues. I was on Ibrance and Femara. Stayed just on Femara during dbl mastecomy and radiation last fall. Prayers!

[hopefulinadks in reply to NeverOutOfTheFight]

That is encouraging. Thank you for getting back to me! Best to you as well and I hope that you are healing up from your ordeal.