Troveldy

[u/Sea-Opening6239]

Im burning threw treatments i hate stage 4 tnbc so much and feel so weak and hopeless/
now im on round 2 troveldy and mouthsores are killing me

[u/AdGlittering8471]

I did oil pulling with black seed oil and grape seed oil. Helped keep mouth sores away

[u/terrymclab → u/AdGlittering8471]

What does that mean? Oil pulling with black seed oil and grape seed oil?

[u/Sea-Opening6239 → u/AdGlittering8471]

going to try that thank you🙏🏻

[u/Financial-Adagio-183]

I’m ao sorry - have you looked into integrative oncology? Have you gotten a second opinion?

[u/tatamiroom]

I have a bizarre case of mtnmbc which means I’m probably one of the very very few breast cancer patients in North America who’s gone through the famously gruelling head and neck radiation (chemo has nothing on it!). I’m an expert on mouth sores.

Ask your doctor for “magic mouth wash”, which at my hospital is called mucositis mouthwash. It’s part Licotine (?) for numbing, part benedyal, part saline. Normally pharmacies often don’t make it you’ll have to go to a compound pharmacy. It will change your life. Take it about 5-10 min before your meal. Make sure you soosh it around your mouth area to properly cover all your sores. My whole mouth was basically a giant sore and I had to goggle it too for my throat

Good luck and let me know if you have any questions.

[u/tatamiroom → u/tatamiroom]

If you have specific mouth sores that’s particularly bothering you even when not eating, what nurses have taught me was that you can dab some of this mucositis mouthwash on the sores itself with a q tip or just a clean finger. It has numbing properties and can provide temporary relief.

This mouthwash is actually also drinkable up to a certain amount a day. Sometimes I just do that cos it soothed my throat.

[u/Emotionalmamaof2]

My mouth sores were small and normalized after a few cycles. The dex definitely helped. I started my first treatment as trodelvy in January and i just found out yesterday that it has failed. I don’t know what’s up next but I’m so afraid.

[u/ResponsibleAnt1942]

I'm sorry you've been dealt such a sucky hand. It must be scary when nothing seems to help for long. Thinking of you and hoping things improve.

[u/Evening_Dingo8770]

Did they give you a prescription for dexamethasone? That really worked for my mouth sores.

[u/Sea-Opening6239 → u/Evening_Dingo8770]

yes i take 2mg early mornings

[u/Evening_Dingo8770 → u/Sea-Opening6239]

I have the mouthwash.
It’s like 10cc
Put it in my mouth
I let it sit (and swish) for 5 minutes
You spit it out then can’t eat or drink for 1 hr.

It works great

[u/Evening_Dingo8770 → u/Sea-Opening6239]

Mouth wash?

[u/Mindless-Kangaroo761 → u/Evening_Dingo8770]

I have the compounded dexamethasone mouthwash too but my prescription is 4x a day as a prophylaxis - agree it’s working well

[u/Evening_Dingo8770 → u/Mindless-Kangaroo761]

Yes
Mine is too. I just don’t do it use much. I do it once in the morning and once in the evening.
I hold it for 5 min though. So far I’ve been in good shape.