Something new in the treatment arsenal?

Hi @vicsmit
Just reading your post here. I'm so sorry about what happened to you with Kisqali! That's awful! I've been on Kisqali for 3+ years now. Do you happen to remember what dose you were on during the trial? What were the first issues you noticed with your eyes?

How is Truqap working for you? Are you finding the side effects tolerable?

Prayers for you for all of this. Zebra

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Hi Zebra. I took Kisqali in 2019 and don't remember the dosage. The first indication of eye infection was feeling of having an eyelash in my eye, then progressed to sensitivity to light. The second eye infection I knew right away but I was in a small mountain town with no care nearby. My eye teared up so badly it was running through my nostril, lol. I have been on Truqap since mid January and am feeling well although this drug has a tendancy to cause diabetes. So I have been buying the Libre 3 constant glucose monitor and I do have elevated levels when taking the pills (800 mg daily for 4 days then off for 3 days). I have a pet scan scheduled later this month, hoping for good results!

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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

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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

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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

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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!!

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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!!

Jump to this post

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!!

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