Best Of

Re: Abemaciclib Verzenio for Stage IV

Thank you for the practical tips and the hope!

I received my last scan report today (brain MRI). Fortunately, brain is clear. Only issue seems to be a 5mm met on the bone on the left side of C1. Nuclear bone scan showed some activity in formerly sclerotic mets in the left femur near the hip. Not qualified to diagnose myself, but feeling a little upbeat that I still seem to be bone only.

Not looking forward to MO appointment tomorrow. She is a "glass half empty" type. In the process of obtaining a second opinion from Johns Hopkins.

eleanora

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Finishing verzenio

I have just finished two years of abemaciclib, following on from surgery, chemo and radiotherapy. I was lucky that just as I finished radiotherapy, Verzinio was approved in the UK for stage 3 BC patients with high risk of recurrence. Given the pretty awful side effects as well as the timing, it means that there aren't many people in my position, who have finished 2 years' treatment.

I am still on letrazole, zoladex and zometa, but this sees the end of a pretty arduous chapter. I've been anaemic since I started chemotherapy 2.5 years ago and my white cell count is on the floor. I've also had the fatigue, thinning/disappearing hair, gastrointestinal issues and more recently, massive inflammation leading to a rheumatoid arthritis diagnosis and lots of steroids.

I am hoping I will start to feel better - I don't remember what it's like to have energy and enough breath to go up a set of stairs 🤣🤣. Is there anyone else who has been in a similar situation?

melanier

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Re: eye (ocular) metastasis - a rare location for metastatic breast cancer

@toughcookie I am so sorry to hear that you've been going through all this. I started Kisqali/letrozole right after chemo and it was tough at first since I was already so fatigued. I'm very used to the drugs now and live a normal life. I had a dose reduction of Kisqali because of low neutrophils (600 to 400) and it's working just fine for me. Hang in there. You've been through a lot and your body needs time to adjust. My hopes that this treatment works very well for a long time.

tougholdcrow

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Re: eye (ocular) metastasis - a rare location for metastatic breast cancer

Hi @toughcookie - We’re so sorry to hear about the progression and everything you’ve been dealing with. We understand, it’s a lot all at once. We’re glad to hear the radiation helped with the pain, but those side effects you describe are no small thing.

If you haven’t already, you might also consider joining one of our free Virtual Support Groups for people living with metastatic breast cancer. They can be a really supportive space to connect with others who understand what this phase is like:
https://www.breastcancer.org/community/virtual-meetups

We’re really glad you came back to update us. Please keep posting when you can. We’re here for you 👩‍❤️‍👩

The Mods

moderators

1

Re: MRI results & awaiting biopsy

@charchar8 Sorry to hear you need a biopsy but glad you have an appt now. I can empathize , I went through many biopsies for years before I was diagnosed. Had ADH , dense breast and high risk, I know it can be nerve wrecking for sure . Agree with mods you just need to stay on top of things so that if anything does evolve there's a good chance it's caught early! Stay busy and remember there's nothing you can do to change things but can control how you prepare for it. There are many great screening tools but there's nothing more definitive than a tissue biopsy! May the time go quickly as you wait , sending strength and positive vibes your way.

cookie54

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Re: My Husband, My Life, My Love, My Family, My Cancer

Update from me….

With my liver progression I had on March 21 scans, and the liver biopsy I had on April 6, we have decided I am going on IV Enhertu. I switched from HER2 negative to HER2 positive. I will have to get a Port- I had one in 2017 but removed it 2023 because I was on oral meds and did not need it.

I will update my profile.

candy-678

6

Re: MRI results & awaiting biopsy

Hi @charchar8 ,

Ugh, I’m really sorry — that kind of report is enough to make anyone spiral a bit, especially after all you’ve already been through.

We see this a lot with high-risk MRI screening. MRI is super sensitive, so it picks up things that other imaging doesn’t, and “non-mass enhancement” is one of those findings that often ends up needing a biopsy just to figure out what it is. It can be a range of things, many of them not cancer.

Totally normal to be freaking out while you wait. The waiting part is honestly the worst.

You’re doing exactly what you should be…. staying on top of screening and following through. Try to get that biopsy scheduled soon so you’re not stuck in limbo too long.

Hang in there, and keep us posted. You’re not alone in this. 💛 We send you hugs!!

moderators

1

Re: Can we have a forum for "older" people with bc?

Welcome honeymoonkaminiski.

Thanks for all your support and encouragement for DD's journey. Still in a holding pattern - no date. Paperwork supposedly got lost in the bureaucracy. Dental release was faxed to the wrong number and no one knew to whom it went.

Leaving Ken home with the dogs isn't an option. He forgets to take his medicine and really wants to see Debbie. He still is with it enough that I could never convince/ force him to have someone stay with him. I leave him during the day and he carries an AirTag but I would worry so much if he was here alone, I wouldn't be any help to Debbie either.

Chris - I quickly lost 20 lbs with Atkins and gained it and 20 more as quickly. Ken worried about how unbalanced it was - particularly no fruit. Hope you get the use of your second hand back quickly. It's been a long time for you.

Loved seeing all the spring flowers. Thanks for sharing.

1946taco

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Re: Afinitor/Aromasin

@ailurophile

Hi

Hi my dear,

I just wanted to check in with you and see how you’re doing on Afinitor so far. How are things going with you? Have you noticed any side effects, or is everything manageable?

I really hope you’re feeling okay with the treatment and that things are going smoothly for you.🙏🏻🙏🏻🧡

norah2024

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Re: How long have you been Stage IV?

@ssales13 To echo @tougholdcrow , @eleanora, @eddiej , I sure wish you the best on the new treatment. Hopefully, this is the one that lasts a long time! @eleanora and @eddiej, I pray your treatment changes, if needed, also yield great results.

Thinking of you all and wishing you a wonderful spring! 🌸🌷🌺

Hugs, Pam 💗

livinglifenow

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