Ibrance and Letrozole: Newly Diagnosed Treatment

Posted by sharonyb4000 @sharonyb4000, Sep 30, 2021

Hello,
My name is Sharon, I am 56 years old, and I have recently been diagnose with IDC Breast cancer the has spread to my lymph nodes and metastasized to various areas (Rib, sternum, spine, and iliac bone). Apparently I am one of the 6% of women who receive this type of diagnosed with no previous cancer diagnosis. I was completely overwhelmed when I received these diagnoses from all the scans, tests, and biopsies. So now I am learning how to live with an advanced diagnoses and my oncologist started me on Letrozole and Ibrance to slow the progression of my cancer. Does anyone have experience with this treatment?

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pjsfla | @pjsfla | May 7, 2022

In reply to @pbnew "I had neutropenia and liver issues with Ribociclib. What causes your lung to fill with fluid?" + (show)

The vague answer is " The cancer " which is dividing and residing in the pleural area , between lung and the ribs Supposed to be air in there, not liquid and it is horrible gasping for air , headaches , or trying to sleep , or just unloading a bag of groceries . No real answer has been given to me for that question . New doctors next week : pulmonologist and a new oncologist ! I'm excited and hopeful .

Chris, Volunteer Mentor | @auntieoakley | May 7, 2022

In reply to @pjsfla "This is odd . At Kaiser Perm , they have me on 21 days of Ibrance..." + (show)

First off if you just don’t like the doctor then I would look on the website for your insurance and see if there is another provider in your area.
Failing that, I would check and see if there is a nurse coordinator/patient advocate you can talk to. I would also, have someone with me at my next appointment. Another person listening can be a big help, also some doctors will be more open to questions if you write them down and have someone with you.
I really hope you can talk about your treatment plan and what YOU would like out of that plan.
Do you have someone who can join you, and listen in, help ask questions?

pbnew | @pbnew | May 7, 2022

In reply to @pjsfla "This is odd . At Kaiser Perm , they have me on 21 days of Ibrance..." + (show)

I had neutropenia and liver issues with Ribociclib. What causes your lung to fill with fluid?

pbnew | @pbnew | May 7, 2022

In reply to @auntieoakley "I am sorry that treatment failed. Have you discussed the next steps with your doctor?" + (show)

The oncologist thinks I should continue anyway, same dose. I said I would try a lower dose but I’m not 100% on that.

pjsfla | @pjsfla | May 4, 2022

In reply to @mhsosa "I have been on verzenio (2 x day) and anastrozole 1mg a day for over a..." + (show)

This is odd . At Kaiser Perm , they have me on 21 days of Ibrance then 7 days off . I have been held up 3 WEEKS for low blood count the 1st cycle . Now, just past 2nd cycle, I am again prevented from continuing the Ibrance , Neutropenia again . Even on a lower dose (100) which I pushed for . So my R lung keeps filling up w liquid and I have to ck into the hopital and have it drained by Thoracentesis , so I think that sucks . I want a continuous treatment not this off and on crap , very frustrating . I would race to a different cancer dr , but stuck w Medicare assigned to Kaiser until OCT , when the whole freakin United States can do open enrollment, GRRR . I feel discouraged and trapped , and have no idea if this Ibrance/falsodex shots regimen is even worth continuing to try . It would be fine , not getting horrible side effects , considering my oncologist tried to shove me into Taxol drip chemo FOR THE REST OF MY LIFE . OH HELL NO . That would def be NO quality of Life and HUGE INTENSE side effects , vs the Ibrance pills and the monthly shots . Any guidance or ideas ?

Chris, Volunteer Mentor | @auntieoakley | May 4, 2022

In reply to @pbnew "Thanks. No problem with Letrozole but didn’t make it through first cycle of Kisqali. Low white..." + (show)

I am sorry that treatment failed. Have you discussed the next steps with your doctor?

pbnew | @pbnew | May 4, 2022

In reply to @leeann66 "Hi there, I was on 600mg/day dose with minimal side effects. My hair thinned out a..." + (show)

Thanks. No problem with Letrozole but didn’t make it through first cycle of Kisqali. Low white blood count followed by high liver numbers.

leeann66 | @leeann66 | May 3, 2022

Hi there, I was on 600mg/day dose with minimal side effects. My hair thinned out a bit and I had some bone pain in my wrists but very manageable, overall the treatment was well tolerated.

pbnew | @pbnew | Apr 30, 2022

In reply to @leeann66 "Hi Sharon, my name is LeeAnn. I am 55 years old and last year June 2020,..." + (show)

May I ask what dose of Kisqali are you taking? What side effects have you had? Thank you.

Chris, Volunteer Mentor | @auntieoakley | Mar 9, 2022

In reply to @mhsosa "I have been on verzenio (2 x day) and anastrozole 1mg a day for over a..." + (show)

I know how difficult some of these drugs can be. If this were a mild side effect, I am sure you would feel differently. I usually judge a side effect by how much it affects my quality of life.
They are coming out with more and more choices for MBC all the time. In many cases it is almost a managed disease now.
I am sad to hear you are struggling with your current regimen. Are you really comfortable with either of these doctors, so that you can talk about your decision further. You mention just staying on Verzenio, how bad is the gastrointestinal side effects? Only you can really decide the cost vs. benefit of this combo, does it interfere with your daily activities? Is it adversely effecting your health in other ways?