Bone Progression

[JEE123]

Just had a bone scan. Some new Mets and a few old ones have grown. Obviously progressing but didn't give a percentage of growth. I don't see my oncologist for a few weeks. Currently on on ancestral and ibrance. Anyone else have this happen? It's only been about 18 months since my demo I diagnosis. Tumor markers have been going up but still in normal range.

[Kateds]

l am so sorry you are experiencing progression. Maybe it is something that radiation can handle and you can stay on the same drug combo. I’m sure your onc has a great plan going forward. Just hang in there and have faith. People are living longer with these new drugs. Love from, Kate from Alabama

[Kerryd22]

I had progression in the first three months on Letrazole. I switched to Abraxane for six months because the progression was fast and was considered aggressive. Then I started Exemestane and Afinitor. I stopped Afinitor ten months later but I’m still on Exemestane. And yes I’ve had occasional progression since but it’s still considered stable based on the scans which show that while one area might be active this time next time it isn’t but the other side is. A mesenteric node became involved in 2023 but a scan three months later showed the mets were shrinking and that continued until it was no longer active and it still isn’t .

A post here a year or so ago had a link to a YouTube video which explained that progression supporting the need for change is 30% new growth. I know many patients and their doctors don’t wait that long but I was glad I did because the longer I can stay on Exemestane the better. I was diagnosed de novo in mid 2015 and I started Exemestane mid 2016.

I may have saved the post if you want to follow the link yourself.

It’s definitely too soon to panic especially if the progression is minor. Over the years my Mets have basically taken over my bones literally from my head to my toes and everywhere in between but just because the AI might appear to lose control of the mets for a short period it doesn’t mean it won’t reassert control given a bit of time. My ER% is 100% and PR is 80% so that might explain why the second AI post chemotherapy has worked so well for me but I know ladies who have been ten plus years right up to 16 years on Letrazole. It’s an effective drug even though I didn’t find that was the case but Exemestane is basically the same thing and it did work. I did wonder why the doctor would choose that drug when an AI had already failed me but turns out she was the expert and she was right!

All the best

Kerry

[Suite1000 in reply to Kerryd22]

The report says the progression is moderate. Whatever that means. I saw someone post that their oncologist doesn't make changes as long as the cancer stays in her bones (despite new things occasionally popping up) They all seem to have their own style. Personally, I am very conservative as far as treatment goes. I want as little as possible. I have tumors in my breasts, lymph nodes and other bones that are all stable. A small early tumor (which was never verified as cancer was in my liver, which is now almost totally gone). The new activity is bones only. So I'm hoping that we can proceed slowly.

[Praising in reply to Kerryd22]

Great to hear your response on exemestane. How was affinator? I’d like the post if you have it on switching.

[Kerryd22 in reply to Praising]

Afinitor was okay but the side effects I experienced led the doctors to dropping it. I didn’t get mouth ulcers but I did become anorexic and it caused liver inflammation. I lost at least 30 kilos and liver numbers were sky high. By the end I was thin and starting to turn yellow. But once I stopped everything returned to normal. Liver inflammation is rare at about 1% I think and anorexia is about 40% .

I’m looking for the YouTube post but in the meantime I found this. inspire.com/groups/advanced...

You might find it interesting. I’ll keep looking for the link I mentioned before.

[Kerryd22 in reply to Praising]

YouTube link

youtu.be/Hn3oB0P6Kpo?si=aVF...(Not working as expected?)

[Suite1000]

Just wanted to update everyone. My oncologist is going to stay the course for a month

and keep an eye on how I'm feeling and doing a second Signatara test. She doesn't think I need radiation due to lack of pain. Next step (without mutation) Fulvesterant and one of the

other CDK 46 inhibitors. Currently on Ibance.