Ibrance

[marianne88]

Hi ladies. Just wondering if anyone had been on ibrance and faslodex for more than 5 years. Thanks

[Hidden]

Hi marianne88,

I haven't, but pretty close, sort of?

I was on Ibrance + Letrozole for almost four years, then switched to Ibrance + Faslo a little over two years ago. I sort of regret changing, i.e. the "progression" was so subtle and I have legitimate questions about whether or not the two, tiny "new" mets were really new (it's a long-ish explanation, I'll spare you...).

So I'm a week away from six years, extensive bone mets, but asymptomatic (i.e. no pain, no issues...).

I do hope you hear from someone with the experience you're looking for...I'm sure there's someone out there with it!

Best,

Lynn

[Sjjohnson52 in reply to Hidden]

Hi Lynn. Why did you change from iBrance/letrozole?

[Jbooml in reply to Hidden]

Hi there sorry to interrupt but I’m sorely in need of good advice from a long hauler such as yourself. I have a similar survivorship on the prostate side...obviously male who responded luckily to what’s known as Eligard(hormone treatment)...as in total testosterone deprivation. I’m older and you could see my story on the advanced PC portal.

To cut to the chase my wife was diagnosed a week ago today with what I’d call runaway metastatic breast cancer...devastating in that as She’s tested the news just gets worse. I’m hoping she has a similarly responsive hormone avid type or I’m not sure what we’ll do. She’s had little to no symptoms despite some extensive progression which is why I’m compelled to your story. Anything you can reflect, posit or wave us away from would be helpful.

We don’t know when or if treatment begins as she can only be biopsied this Jan 5..and living very remotely we know the challenges facing us with travel and lodging. It’s ironic that all the time I was returning to good health she was hosting a demon within. I’m dazed and confused and losing hope with all the growing odds against.

Sorry to dump this on you but I feel I need to start somewhere in helping in any way.

Jeff

[marianne88 in reply to Jbooml]

Jeff. First let’s start in the beginning. What type of cancer does she have?

[Jbooml in reply to marianne88]

Metastatic breast cancer

[marianne88 in reply to Jbooml]

When did her journey start? Where did the BC spread too?

[Jbooml in reply to marianne88]

As for its origination...it’s a complete unknown given her being clinically unsympathetic. We discovered it through a tendon tear...similar to my story. Her cancer is extensive especially her bones.

[Jbooml in reply to Jbooml]

Unsymptomatic

[marianne88 in reply to Jbooml]

Ok so there is a lot of treatment options if it’s only in her bones and no organs.

[Jbooml in reply to marianne88]

So we’ve been busy with tests and such. My wife is now quite ill but a slimmer of good news arrived this week..despite a heavy load of multi systemic Mets her histology and bio markers came back back with encouraging results. Basically she seems to have low mitotic and medium chromosomal abnormalities. Her breast biopsy came back strongly ER+, no Pr or notable Her2 markers. I’m encouraged. We have her first Medonc appointment on Wednesday. I’d appreciate any opinions experiences or concerns we might present to him.

[Glas0824]

I’m not sure how long Ibrance been around, but I’m in Scotland and know I was one of the first my doctor had on it here and that’s two years ago.

[bankusboysmom]

Hi Marianne, I'm about 2 months shy of finishing up 6 years. I've been on Ibrance + Faslo the whole time. My worst side effect is the fatigue. It's actually not too bad, but I'm still struggling, after all these years, with not being able to do what I used to do. I've become a world-class napper!Hope your holidays are lovely. Melinda

[PJBinMI]

I'm a long timer.....diagnosed at stage IV in March, 2004, long before meds like Ibrance. I got almost five years from Letrozole (plus Zometa, then Xgeva for bone mets) and then over 9 years from Faslodex! I really liked being on Faslodex, no daily pill to remind me of cancer, and going to the Cancer Center every month and seeing the RNs and other patients. We added Ibrance for a few cycles but it did permanent damage to my lungs. So do be sure to let your onc know rigth away if you start having trouble breathing, getting out of breath easily, having trouble in humid air. I've known several women, face to face, who have gotten more time outta Faslodex than they did from initial Letrozole!

[Adele_Julia in reply to PJBinMI]

Congratulations for being a long term warrior !! Blessings xo

[hurricaneheather]

no Faslodex. still on first line of treatment which began August 2015: Ibrance, Anastrozole, Zolodex; changed from Letrozole to Anastrozole in 2015 & Lupron to Zoladex this Oct.

[Mimiholl]

Happy holidays, I will have been on Ibrance 125 and letrozole for 4 years in February. Recently I have had to take a 2 week break off of Ibrance twice because of dangerous anemia . Although my numbers are still extremely low, they increased enough for me to resume treatment, for which I am very grateful! I am encouraged that there are those of you that have reached a 6 year milestone. My anemia seemed to get worse when I started on low dosage high blood pressure meds and the change of Ibrance capsules. I’ve had additional scans (normally every 6 months for full body ct scans and bone scans) to rule out any other reasons. Fortunately it just seems to be the Ibrance. I also get xegeva shots monthly . I have mild side effects, still have some nausea and am fatigued. As we all have experienced this has been a crazy year.

Hopefully by the spring I will be able to be vaccinated . I have some severe allergies to many antibiotics, so I’m on a wait and see. My youngest son and family are in my bubble so I can see them everyday, while my oldest son and family I can see them socially distance and masked outside. Luckily I live in North Carolina now, previously in Massachusetts , and this would not have been possible.

Stay safe and Happy New Year

Marianne H