Line of treatment : Hi. Just wondering... - SHARE Metastatic ...

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Line of treatment

marianne88 profile image
35 Replies

Hi. Just wondering how long ibrance and faslodex worked for you? What was your next line of treatment. Thanks.

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marianne88 profile image
marianne88
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35 Replies
ndastrogal profile image
ndastrogal

I also would like to hear other's experience. I've been on both since Nov 2019 and having my scan Feb 17. I tolerate it very well but always think it's not working!

marianne88 profile image
marianne88 in reply tondastrogal

Why do you think it’s not working?

ndastrogal profile image
ndastrogal in reply tomarianne88

Because I have zero side effects and sometimes think I should be feeling something. But I also know I should be grateful for feeling good. Scan will tell all.

marianne88 profile image
marianne88 in reply tondastrogal

Why do you think it’s not working?

Susan1953 profile image
Susan1953

Ibrance/letrozole, 33 months

Selmac profile image
Selmac

Hi Marianne, Ibrance and Faslodex did not work for me at all. I was on it six months and had progression. Since then, I have been on Afinitor and Aromasin. Over 2 years with no progression.

Wintervt profile image
Wintervt in reply toSelmac

Sorry to high-jack the post but this is good to hear. I am currently on Falsodex after 18 months on Ibrance/Letrozole. My tumor markers are going up and I'm scared, hearing your success gives me hope.

marianne88 profile image
marianne88 in reply toWintervt

What are your tumor markers at

Wintervt profile image
Wintervt in reply tomarianne88

My CA 27-29 is at 240

marianne88 profile image
marianne88 in reply toWintervt

What is your CA 15-3

Chrissie-Mac12 profile image
Chrissie-Mac12 in reply toWintervt

Are you on Faslodex alone?

Wintervt profile image
Wintervt in reply toChrissie-Mac12

Yes, Faslodex only, pending the results of my liquid biopsy. If I have the P13K mutation she will add Piqray.

Chrissie-Mac12 profile image
Chrissie-Mac12 in reply toWintervt

That’s a great response. Ibrance and Letrozole failed me after 16 months. I’m starting a trial on Wednesday where I will either get Faslodex alone Or Faslodex with a leukaemia drug called Venetoclax. It’s good to know that you’ve had a good response to the singular treatment. I’m in Australia

Wintervt profile image
Wintervt in reply toChrissie-Mac12

Will you know which arm of the trial you will be in? I just met with my oncologist at Dana Farber in Boston and she did not mention the trial you are participating in. Hoping you have great results!

Chrissie-Mac12 profile image
Chrissie-Mac12 in reply toWintervt

I find out tomorrow. It’s called the Veronica Trial. It’s currently a phase 2 trial with 100 participants

Wintervt profile image
Wintervt in reply toChrissie-Mac12

Keep me in the loop! xo Jade

Wintervt profile image
Wintervt

My oncologist only does 27-29

Wintervt profile image
Wintervt

It has increased from 80 to 240 in two months.

marianne88 profile image
marianne88 in reply toWintervt

Oh my dr only does the 15-3.

Wintervt profile image
Wintervt in reply tomarianne88

It's interesting what oncologists rely on.

PJBinMI profile image
PJBinMI

I got over 9 years from Faslodex, second line treatment after nearly 5 years on Letrozole. Drugs like ibrance were not around when I was diagnosed in 2004. I did take Ibrance for a few cycles in 2016 along with the Faslodex, but it damaged my lungs. I've been on Exemestane for a bit over 2 years, now . But we each have our own set of cancer cells and how we respond to treatment sure varies What I suggest for all of us is getting a second opinion from an onc who specializes in breast cancer. The top cancer centers in the US are those called Comprehensive Cancer Centers and they are listed under "resources" on the right side of this group' s home page. The CCCs have very specialized oncs who both see patients and see patients. They are great for second opinions.

Evbr profile image
Evbr in reply toPJBinMI

Hi, what do you mean by “damage my lungs”? What happened?

Thanks

PJBinMI profile image
PJBinMI in reply toEvbr

I developed a condition called"Interstitial Lung Disease," which Ibrance can cause. The pulmonologist described it as being like "gunk" between the air sacs. It causes getting out of breath easily.. And it led to me also developing atrial fibrillation. So now I have two more doctors and 3 more meds plus compression sox. ILD is supposedly a "rare" side effect of Ibrance, but when I started on it, the drug company did not have the warning about it that is has to have now. I get out of breath just getting showered and dressed in the morning.

Gwennie123 profile image
Gwennie123

I was on Ibrance, Faslodex and Xgeva for14 months. They stopped working and now on Doxil and Xgeva for 2 months. Manageable side effects. Fatigue and headaches.

Hopeful.

8576 profile image
8576

Sorry, can't help you there. I am in the process of getting started on Faslodex and Ibrance. Not sure I will proceed the cost is prohibitive. Faslodex is $832.00 per month for me. Not covered by government health plan. Seems to be a good combo, judging by posts here.

Cheers, June S.

Lordmandy profile image
Lordmandy

Ibrance and Femara from 4 years and 4 months. In Fulvestrsnt only for now, while finishing radiation, because of risk to bone marrow during radiation. The plan is to begin Ibrance again, with the Fulvestrant 3 days after radiation because it has been do effective thus far. I am requesting to go to Kisqali instead, another CDK 4/6 inhibitor instead because studies have shown it to work longer. Not sure if doc will allow. I just learned that I am pic3ca positive, which makes me eligible for the new drug, Piqray, Which targets that specific mutation; but I understand the side effects are more difficult, so I want to continue CDK 4/6 inhibitor first. there are clinical trials underway now that Are showing CDK46 inhibitors may begin working again after a seven week vacation because of the way the sales communicate through genomes, And not replicating mutations. As it turns out, after fighting insurance to cover my treatment, and then the treatment itself, I will have been off I Brandts for seven weeks. I am expecting it or Kisqali will work again.

Lordmandy profile image
Lordmandy

Please excuse typos.

hdhonda profile image
hdhonda

Marianne, I am on my 35th month of Letrozole/Ibrance combo. My next scan is in March. Blessings, Hannah

Have-faith profile image
Have-faith

Faslodex worked for about 5 months on me. Next line of treatment became

afinitor and exemestane which has had very good results for me. Markets went down to 27 u til this month when they popped up to 34. I have had pneumonia since October so this maybe effecting markers. Pneumonia is almost over, but it takes months sometimes to get back up to speed.

Epinto profile image
Epinto

Hi marianne88. I have been on ibrance 125mg. And faslodex for almost four years this coming may. Always realistic that things could change but grateful so far! Hope u r doing well.

jstickrod profile image
jstickrod

It worked for 18 months for me, then had to switch due to many infections. Switched to Xeloda, and have very few side effects. Been on Xeloda since April 2019

Stinsonmom profile image
Stinsonmom

It worked for me for nine months.

SeattleMom profile image
SeattleMom

Hi, Marianne,

I have been treated since diagnosis of MBC with the combo Letrozole and Ibrance (100 mg) for the past 26 months.

Linda

Jeremiah2911 profile image
Jeremiah2911

Hi Marianne,

I have been on Ibrance/Faslodex for 14 months now with tumor markers dropping & tumor shrinking. I did 125mg dosage for a year but fatigue was getting to me so we switched to 100mg last two months and it’s really helped. So hopeful to hear others have been on this combo for years! Prayers for us all 🙏🏻❤️

Klamato profile image
Klamato

Ibrance worked by containing my Mets for 19 months. My new medication is Verzenio 100 Mg. Along with Tamoxifen . This was decided by two major cancer centers and the respective docs. Just hoping it does the job before I would go on chemo. Keeping my fingers crossed,❤️👍 Kathy

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