PET/MRI scans show new activity

[Lolli2020]

I was hoping that my oncologist would tell me that the areas in the iliac bone and bone marrow were indeed just inflammation from the radiation - but what she found with last week's scans is that I have some new activity in the bone that is "smoldering". No new tumor is seen, but the activity is there. So she has dropped the Afinitor/Exemestane combo and is going to start a new combo of a different pill (can't remember which one she chose and I haven't started it yet) with Fulvestrant injections. She has ordered metabolic testing on the remaining sample from my biopsy 2 years ago - and will decide where to go from there after receiving the results. She is thinking she will have me do a once a week infusion treatment - which will require me to get a port put in again. Is anyone doing a weekly infusion? I can't remember the name of this one, but she said I probably wouldn't even detect that I'm on treatment as far as side effects - and I won't lose my hair. Yay! She has a patient that's been on this treatment for 10 years with good success. Does this sound familiar to anyone.

Blessings to you all! ~Anita

[Rhwright12]

Not sure what it is...but for 10 years! Let us know...can I have it? 🙋‍♀️ 😀❤️

[Lolli2020 in reply to Rhwright12]

I would definitely love to have good reports to share after being on the new meds! Will keep you posted!

[hdhonda]

I am not familiar but a drug that may keep you stable for ten years sounds good to me. Best wishes. Blessings, Hannah

[SeattleMom]

God bless you, Anita, as you begin new protocol!

💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗

[Red71]

I’d be looking forward to this drug if they are saying no side effects. I’d love to get rid of my Ibrance exhaustion! Sorry that your scans are not as good as you wanted, but maybe some good will come out of it. It will be interesting to see what the results of the metabolic testing is. Hugs! Elaine

[Hidden]

Gosh, so sorry you have to change treatment but this sounds very promising! I wish you many years of success with it!

[AuntC]

Sorry you're having to change treatment. I pray the new one will help even more. Please post what the new one is.

God bless!

[Lolli2020 in reply to AuntC]

Me too - it's just the great unknown. But I will definitely post when I have the new information. I won't start until after I return from Colorado in a few weeks. My second grandson (in 3 weeks) was born this morning and we'll be going in a week or so to visit!

[8576]

Wonderful. Don't know anything about this but 10yrs. sounds great. Please keep us updated.

Cheers, June S.

[Lolli2020 in reply to 8576]

Will do. I have high hopes!

[hopenowandtomorrow]

I’m not familiar with the new treatment. Wishing you all the best with it ❤️🙏❤️

[RLN-overcomer]

Greetings/Shalom: Sister/warrior I hope/pray you will leave more information on this exact treatment, and include the specific drug(s) and the amount(s) you will be taking. Thank-you.

[Lolli2020 in reply to RLN-overcomer]

Will do - will probably be about 3 weeks before I start!

[mariootsi]

Doesn't sound familiar, but I wish you 10 successful years.... Or more!

[Zennia]

I am in the same situation as you. My onc wants to start abraxane infusions which do have side effects. Please let us know what treatment she is planning for you. Thanks

[MacroMom in reply to Zennia]

Have you stopped Piqray? I was following your last post because I too have the mutation, but am concerned about the side effects. I’ve been on Abraxane since Feb with good results on cancer markers and scans, happy to share more if you have questions.

[Zennia in reply to MacroMom]

I will be stopping Piqray since it has stopped working. What side effects have you had from Abraxane? I really hate loosing hair!

[MacroMom in reply to Zennia]

It does seem that hair loss is the norm if you take Abraxane, mine came out in clumps after 2 weeks. It was my first experience on chemo and certainly no fun. But honestly, I'm used to the scarves/caps/wig now and so relieved that my liver mets are shrinking and tumor markers dropped. My other main side effect is nails; my finger nails have turned white/ivory halfway down, though they seem to be getting better and my oncologist doesn't think I'll lose any. I had a few days of fatigue and nose bleeds when I was getting Abraxane 2 weeks in a row, but now that I get it every other week I don't notice that either. Dosing and frequency will make a big difference in side effects.

It's an easy IV too; I didn't need a port, they just put an IV in each time, take blood labs first, then put the Abraxane in the same line. It takes about 30 minutes, plus another 15 minutes to flush the line. The whole treatment can take 3 hours though due to waiting for labs, then waiting to mix up the Abraxane. Bring a good book!

Is your oncologist suggesting any other options for you now?

[Zennia in reply to MacroMom]

No other options at this time . Thanks for all your info. Hopefully I won’t need a port.