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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@mhsosa

I have been on verzenio (2 x day) and anastrozole 1mg a day for over a year. Went recently for second opinion. Oncologist took me off the verzenio and anastrozole. She did this because I told her about diarrhea and vomiting and no energy. I wondering what kind of results other patients have had with Ibrance and Letrozole. I have read life expectancy not as good with Ibrance compared to Verzenio. The Ibrance I am to take 28 days then go off 7 days and restart cycle of 28 days on, 7 days off. Any and all info will be greatly appreciated. I am wondering if I should just stay with verzenio. Am I stresses or what???

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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 ?

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@auntieoakley

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

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

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@pjsfla

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 ?

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

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@pjsfla

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 ?

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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?

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@pbnew

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

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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 .

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@auntieoakley

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?

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I appreciate your ideas but have tried them already . I had my son & DIL , who both have MPH and also years of working in medical fields , and they are very frustrated now too . Having no clear treatment plan , and constant missteps and mistakes , are why I have now switched , new drs next week, fingers crossed I'll get some guidanceand real medical care . I was def trying to get away , as stated above , assigned medicare insur traps me for now. So beyond these suggestions, I am constantly being told to book my own appts , and guess when I need the next thoracentesis , etc . Filing a complaint gets you a form letter with a form apology , but no real change or accountability so far.

REPLY
@pjsfla

I appreciate your ideas but have tried them already . I had my son & DIL , who both have MPH and also years of working in medical fields , and they are very frustrated now too . Having no clear treatment plan , and constant missteps and mistakes , are why I have now switched , new drs next week, fingers crossed I'll get some guidanceand real medical care . I was def trying to get away , as stated above , assigned medicare insur traps me for now. So beyond these suggestions, I am constantly being told to book my own appts , and guess when I need the next thoracentesis , etc . Filing a complaint gets you a form letter with a form apology , but no real change or accountability so far.

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I have also added more B12 to my diet and vitamins , so I can hopefully get continous treatment now on Ibrance w the faslodex shots . Inconsistency surely doesn't help . Starting 3rd cycle today , 100 mg pills .

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@pjsfla

I appreciate your ideas but have tried them already . I had my son & DIL , who both have MPH and also years of working in medical fields , and they are very frustrated now too . Having no clear treatment plan , and constant missteps and mistakes , are why I have now switched , new drs next week, fingers crossed I'll get some guidanceand real medical care . I was def trying to get away , as stated above , assigned medicare insur traps me for now. So beyond these suggestions, I am constantly being told to book my own appts , and guess when I need the next thoracentesis , etc . Filing a complaint gets you a form letter with a form apology , but no real change or accountability so far.

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If you're open to a supplementary insurance plan, you can enlist in that at any time and not wait for an open-enrollment window. AARP offers United Heathcare for example for people on Medicare. The caveat is that it might be harder to enlist if one is currently under care for cancer but I have a friend who was able to switch, while in cancer treatment, because she wanted to go to any doctor, anywhere, and not deal with PPO or HMO stuff.

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@pjsfla

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 .

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I am really glad you are starting with new doctors. At the very least you should be able to be a part of the decision making in your own treatments.

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@pjsfla

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 .

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Thank you for explaining. So much to learn yet.

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