Something new in the treatment arsenal?

@einnoc - thank you for sharing the article. Here is the study that the article was based on to help provide more context on the science behind it, https://aacrjournals.org/cancerdiscovery/article/doi/10.1158/2159-8290.CD-23-1161/741920/Long-term-Multimodal-Recording-Reveals-Epigenetic.

Hello, yes all is well! I was
Locked out of this channel
For awhile so was not responding or commenting.

Just had a scan yesterday so will know if all is still stable.

I don’t remember my last update however side effects, specifically my eyes and mouth and more fatigue.

My “dry eye”
Kept getting worse and worse so I pushed for further testing and was diagnosed with Limbal Stem Cell Deficiency caused by the chemo. On special eye drops made from the plasma from my own blood (pretty cool) since end of January and seeing slow progress, but still progress! (Maybe I already shared that here???)

Mouth sores, well that also got worse and I am expecting a new diagnosis on that also (following my constant research to find solutions and sharing my findings with my medical team!). All issues chemo related!!

Anyways, I have no reason to believe the cancer is not still stable and will know for sure this coming week! 🤞🏻

I also saw that Dato-Dxd was being put forward in the US for FDA approval so will soon be available for everyone!

If you have any specific questions please reach out to me I’d be happy to share!

Thanks for reaching out, will try to remember my password moving forward so I can continue to be active in this forum! 😀

Hello @californiazebra

The plan is that as long as the medication is working, I will stay on it. Fingers crossed that is for a very long time.

In terms of neuropathy, it is minimal.

As for quality of life, as I did with all the other medication‘s, I continue to do everything I want to do, which includes going for walks, dragon, boat practice, spending time with my friends and family and grandkids, travelling, entertaining…

What is different is that some days I do have to take more breaks, particularly in the week following chemo. As well, am regularly through the day having to put a variety of eyedrop’s in my eyes, as well as rinsing my mouth due to pretty significant mucositis. The mucositis also impacts my eating and drinking so that is a bit of a juggling act, but things could be much worse.

That being said, it is all quite manageable just takes a bit of planning and juggling and ensuring I listen to my body to stay as healthy as possible.

With the other medications, Anastrozole and Kisqali gave severe bone pain in particular in my feet and hair thinning, but was manageable.

Affinitor and Exemestane I had a terrible rash and trouble breathing so that had to be stopped pretty quickly.

With the Xeloda, I had nausea every single day, for the whole afternoon, which was more of an issue than what I’m dealing with now.

So long story short, I am living my life and doing all the things I want to do, just with more breaks, more medication’s for side effects and a few more steps to try to be more comfortable, but I’m still doing it all. Hope that answers your questions, feel free to reach out if you have more. Take care, LeeAnn

What did you use for your mouth sores? Besides magic mouthwash? Hope you are doing well 🙏🏼

I just started Xeloda on Monday ( 3 days). What were your major side effects? I will be on this for 33 treatment days M-F along with Proton Therapy ( double whammy)

Hi, I use Biotene toothpaste to help with dry mouth, alternate through the day with Magic Mouthwash and Dexamethasone Elixor and for stubborn or more painful sores I use Zilactin-B. It hurts for a few seconds when I put it on, but then it numbs the area providing a few hours without pain, and it also protects it and encourages it to heal. Biotene also has a gel that I sometimes use to help with the dryness in my mouth, but if it’s all full of sores, I don’t bother with that and just frequently use the other meds I mentioned and am extremely careful in what I eat and drink!

I had nausea every day. Would start just after lunch and end just before dinner. never bad enough to make me vomit, but just enough to feel a bit yucky. Meds sometimes helped, but sometimes not. I also had Some fatigue, but that was pretty much it.

Good morning, just a little update on my recent scan.

As a reminder I was diagnosed June 2020 de novo stage 4 breast cancer, HR+, HER2- (now considered HER2 low) Mets to bones in 7 places.

Kisqali and Anastrozole for 16 months, was NED then progression.

Also monthly XGeva injections which I still do.

Switched to Afinitor and Exemestane for about 6-8 weeks, had to stop due to bad rash and breathing trouble, continued disease progression.

Went on Xeloda for 6 months, didn’t work, continued disease progression.

Started the Tropion 01 clinical trial, phase 3, November 1, 2022.

Recent scan shows no sign of bones Mets, no sign of initial breast tumour, 3 lymph nodes still showing but have shrunk from initial scan and have remained the same size for last 6 months. Dr said it might actually be scar tissue and not cancer.

No new lesions or any evidence of disease elsewhere, all major organs continue to be clear!

Grateful for the Trial, Dato-Dxd and my medical team at the MUHC here in Montreal!!

Hi @leeann66
Someone mentioned an experimental med for a different cancer and it made me think of you. It has been almost 3 months since your last update. Just checking in to see if all is still going well.