Slight progression question

[Yikes123]

MBC 4 years. Bone only Treating with Ibrance & letrozole. Handled well mostly. Bone scan 1 ago showed “slight interval progression.” Tumor markers around 300 after slow but steady increase. No gene mutation.

Oncologist suggests Afinitot plus new AI.

Two questions please. First, is it worthwhile to stay the course with Ibrance and see whether next scan shows stability.

Seco d, doctor thinks low 1/2 dose of Afinitor will decrease likelihood of mouth sores. Anyone with experience on this?

[Kerryd22]

I had Afinitor and Exemestane for ten months. I had no problem with mouth ulcers but I did become anorexic and my liver became inflamed, I’m still on Exemestane nearly six years later.

[U2Rocks]

I have been on Ibrance for 2 1/2 years with shrinkage of tumors noted. Told my oncologist this month that I feel some slight pain so a new scan will be taken when scheduled. My oncologist said sometimes the drug stops being effective but she has lots of other drugs to try. Stay the path and fight like hell. I’m nervous all the time about the what if it gets worse. Prayers

[Hopeful4Cure]

You are lucky t

[Yikes123 in reply to Hopeful4Cure]

Kindly explain what you mean when you use the word “lucky.” I was first diagnosed with BC on 2004 with a mastectomy. Then more bad rides on the BC carousel followed by MBC. I’m not being flip. I just don’t feel very lucky.

I mean, I know it can be worse. I’m wondering what constitutes “lucky” with this new development. I don’t always tolerate treatment well. I dread mouth sores as I frequently get canker sores in my mouth under good circumstances

I’ll gladly clutch for hope if you can elaborate please. Thank you.

[Hopeful4Cure in reply to Yikes123]

I believe I was responding to U2rocks with regard to being on Ibrance for 2.5 years and for whatever reason, I did not finish the post. I was on Ibrance and fasoldex too and it did not last very long.

[PJBinMI]

I was going to write a note to tell you how hopeful it sounds that you've gotten 4 years from Letrozole and Ibrance, but your response to hopeful has me wondering if you were on those meds for four years, or less. I was diagnosed with bone mets from the get-go in 2004 and have met quite alot of long timers with mbc, women who've been dealing with MBC over 10 years, 20 years, even one who'd hit the 30 year mark, plus we have so many more treatment options now compared to when you and I were first diagnosed. We can never know ahead of time how a new to us med will impact us--controlling the cancer, side effects, how long. Each of us has a unique bunch of cancer cells. If you have had only slow progression, some oncs would be slow to change treatment. Especially if the mets aren't causing their own set of health issues. My first onc was an older woman with alot of experience and I trusted her sooo much! When I'd seen a bc specialist onc at a major cancer center, she knew her and said that I was in really good hands! She retired but my current, much younger onc, hasn't been in a rush to change my meds when I've had progression that hasn't caused me any problems. That's worked for me! I will most likely be changing treatment next month, but that will be just fourth line treatment, so I've been really "lucky" with nice lazy cancer cells that have been relatively easy to control. I hope you will do as well as I have for as long as I have!

[Yikes123]

Yes, I was on Ibrance and letrozole 2018-2022.

I wondered about staying on these drugs. Ultimately, the new progression in my hip and a rib, along with steadily rising tumor markers,, led me to this new course of action. I like my oncologist and did my due diligence with my own research. The best I can do is make an informed, calculated decision. It’s always a tough call, especially with a new progression.

Thank you for taking the time to share your perspective

[MyMiracle13]

hello. I am currently on Afinitor 5mg and Aromasin 25mg. I only started taking the meds last 25 November so no tumor markers yet to see if meds are working. I will have my blood test on the 10th so we will find out. My oncologist started me on 5mg to monitor my side effects and to see if the lower dose would work. I hope it does. I have no mouth sores but I experience diarrhea sometimes and loss of appetite.

[Jaynikan]

I am on ibrance and fulvestrant .The first scan after five months indicated good response Now it's two years after i started The doctor said i have to continue with the treatment as long as i respond which can even be five years..I may be checking with pet scan .keeping my fingers crossed Jaynikan

[PJBinMI in reply to Jaynikan]

I got over 9 years from fulvestrant as second line treatment after letrozole stopped working. I'd gotten almost 5 years from it. I've met quite a few women who got more time on second line fulvestrant than from an initial AI!