change of therapy

[Tolife_18]

Rarely post, but try to read as often as I can. Hope to get the advice based on your experience.

Based on my scans it looks that I have progression. New bone mets. TM are trending higher, but not significant. No mutations.

I’m in US.

I’m on palbo+letrozole for almost 4 years, but of course not ready for a change.

the oncologist recommendation is:

5 sessions of radiation (hip met, no pain, no fracture);

Affinitor replace palbo + metropole.

What was your 2nd line therapy after palbo + letrozole?

What is your experience with Affinitor?

Thank you for your help.

[Kerryd22]

Letrazole didn’t work for me so my second line was Abraxane and I had radiation therapy to my skull. Then I went to Exemestane and Afinitor. That was mid 2016 and I’m still on Exemestane.

I found Afinitor was okay because I didn’t get mouth sores. Sixty percent of patients do. Instead I became anorexic and lost a lot of weight but I had plenty to lose. Theres a forty percent chance that you’ll get that. Food tastes bitter even if it’s sweet and you really love it. The bitter taste makes it hard to find something that you can tolerate. My oncologist told me it had a high drop out rate.

The reason I stopped taking it after ten months was liver inflammation. That’s a rare side effect at about 1%. I had a few other issues which I find hard to remember because they weren’t much to worry about. I had skin lesions which appeared on my legs but healed quickly with a topical cream and I had blood dripping into my nostrils. It wasn’t gushing but I’d find myself sniffling and when I blew my nose there’d be signs of blood in the tissue. I also had a fluid problem in my lower legs and feet but an ultrasound showed nothing to worry about so presumably that was another side effect.

Afinitor trialled well and my oncologist was keen for me to try it because it nearly doubled PFS against Exemestane alone.

I hope you do well on it.

Kerry

[Tolife_18 in reply to Kerryd22]

thank you so much Kerry for your detailed response.

Definitely gives me something to thing about.

What dose of Affinitor did you take?

Did you take letrozole alone before switching?

Wishing you many years of stable disease.

Polina

[Kerryd22 in reply to Tolife_18]

I was on 10mg of Afinitor. And I did only have Letrazole because they had me in mind for a trial they were starting. Turned out to be Verzenio but I couldn’t go on it due to the progression.

[Tolife_18 in reply to Kerryd22]

How long are you on Affinitor? Hope you’re tolerating it well and it’s effective.

All the best

[Kerryd22 in reply to Tolife_18]

I was on it for ten months. I stopped in April 2017 but I was to stay on Exemestane until I got progression. Still on Exemestane eight years on.

[Beryl71]

I'm just over four years in. Last year my consultant changed letrozole for fulvestrant because a mammary lymph node was increasing. It has now reduced significantly. I'm wondering why they want to change everything.Hope you get your answers and good luck..x

[Tolife_18 in reply to Beryl71]

Thank you. They want to change palbo to affinitor and leave letrozole. I wonder how they know which one needs to be changed.

[Beryl71 in reply to Tolife_18]

Hopefully their expertise and experience!

[Hazelgreen]

Research indicates that ribociclib is more effective than palbociclib. Both are given with letrozole.

[Bella_mum]

hello!

I’m in Canada, was on Palbo & letrozole for 4 years, and then progression to my liver so switched to affinity and exemestane in May.

Reduced dose of affinity from 10mg to 7.5mg because of mouth sores and headaches and so far after a month on reduced dosage things are going ok.

Hoping to get a few years on this 🤞🤞🤞

Let me know how it goes for you,

Lauren

[Tolife_18 in reply to Bella_mum]

Thank you so much!

Best of luck to you!

[Tolife_18 in reply to Bella_mum]

thank you Lauren!I’ll be starting on 7.5mg to hopefully minimize side effects.

[BorisCarloff]

Hello There! I am in NYC and treated at MSK, I have been on Anastrozole for 15 months with hopes of adding Kisquali last June. I had huge issues with my insurance company and since the Kisquali is soooooo expensive, I could not start it until I finally came on Medicare this year and the insurance was resolved. Finally added Kisquali to the hormone blocker and within a month my liver enzymes went up My wonderful doctor took me off of it for a month and tried again with the same liver enzyme issue. I have a healthy liver. In the 15 months the anastrozole alone shrunk the breast tumor and the mets in my lungs BUT of course I WAS LUCKY because that drug needed a partner. We are going to try the Kisquali again in 6 months but in the interum I am on 7.5 AFFINTOR. Have been on it for 2 weeks, I do not have any side effects, feel great, have all my energy. I know it's early but many side effects start quickly. I did just get a mouth sore or two, which is common with Affintor and used the mouthwash MSK gave me incase those lil buggers appeared. I used the mouthwash for the first time just now and it made it feel better. The best of luck to you ofcourse and hope you have an easy time with Affintor. I did not want to give up Kisquali since that's the latest and the greatest and Affintor is much older BUT what the heck! Had a pet scan last week having only been on Affintor for a week and everything is stable. :))))))

[awesome4ever]

Hi Tolife. I was on Ibrance and Letrozol as my 1st line of treatment and it worked well for 5 years. I certainly remember those feelings that you currently have about not wanting to change treatment but as we all know that is the way when you have MBC. I started Everolimis and Exemestane in March of last year on Afinitor 10mg but quickly developed gastroenterology issues. In May 2023 I dropped down to the 7.5 mg of Afinitor along with the Exemestane which I am still currently taking. I get scans (CT & Bone scan) every 3 months and they have remained stable. I have my next set of scans in a month and am hoping to see stable again so I can continue with this regime. I currently experience no side effects. I hope this treatment is kind to you as well and that it works for both of us a very long time. Of course we know that typically you get a shorter time of PFS with each subsequent line of treatment but I think it bodes well for both of us at the longevity we got from our first lines. Good luck.

[Tolife_18 in reply to awesome4ever]

Thanknyou so much for sharing!

What was considered sign of progression for you.

I have a new bony met that will be radiated. Would it be a call to change the systemic therapy as my oncologist thinks?

Wishing you many years of stability!

[awesome4ever in reply to Tolife_18]

I have been fortunate in that I have a dedicated radiologist that reads all my scans and has done so since I was diagnosed. He is someone that I respect and we know each other. The majority of all my scans show ongoing lytic(active) and sclerotic lesions and they vary from month to month. However the scan I had in February 2023 his wording was different. It stated "Multifocal active bony metastatic disease redemonstrated. While there has been some improvement in T9 and left posterior 7th rib, there has been progression of disease in the spine and bilateral femora. When I met with him and reviewed the physical films it was clear there was noticeable change. As I mentioned I trust him and he knew I hated to change treatment but he conferred with my oncologist that unfortunately my 5 year run on Ibrance/Letrozole had come to an end. We decide this as a team of 3. My reign on Ibrance had far exceeded the average. Also once the word 'progression' is put in the chart it is flagged to the pharmacy team and the expectation is a change should be done.

Where I live they don't financially support radiating lesions for new mets. It will only be done for pain. I have so many mets in my bones that I basically would have to have radiation from top to bottom. Of course that would not be advised as the side effects could be severe and the benefit not present. Hope that helps.

[Praising in reply to awesome4ever]

What is the diierence in sclerotic mestastis and sclerotic lesion. Mine says both