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! 😀
Hi @leeann66
Thank you for the update! Prayers for your scan results! Please update when those come in. It sounds like you're still in good spirits despite some challenging side effects. Yes, neat how they are treating your eyes. New treatments all the time. Also good news that they are submitting Dato-Dxd for FDA approval. Your results to date are encouraging!
Since you're so great about answering questions:
Do they expect you to remain on Dato-Dxd indefinitely or only when there are visual signs of cancer?
Have there been any issues with Dato-Dxd causing peripheral neuropathy as many chemos do?
For perspective, how much does this treatment impact your quality of life compared to the other treatment regimens you've tried (Kisqali/anastrozole, afinitor/exemastane, xeloda)?
Thank you for taking the time to respond. Please keep us posted. Zebra