Chronic cough and Enhertu

[Charlie_99]

Have had mets to my lungs for eight years now and progression has been relatively slow with periods of stability. Interestingly, though my mets in my lungs haven’t materially changed since last year (though too many to count most nodules are less than 1cm with a few in the 2cm range), I now have a chronic cough that leaves me short of breath. Anyone else experience this? Almost any activity triggers coughing leaving it difficult to do anything. I push myself to stay physically active (still riding my horses) though its a struggle and often cannot catch my breath with constant back pain. Not currently in treatment but due to start T-DXd (Enhertu) shortly. Anyone experience worsening of cough during or after chemo? Anyone else on Enhertu that can share their side effects would be much appreciated. Thank you all for sharing.

[CTGirl1962]

oh no!! I’m about to start this drug and my team said to let them know ASAP if any cough persists on Enhertu. It is imperative to let your doctor know. This can be life threatening. Good luck and please let us know how you get on!!

Jody🙏🏻🙏🏻🙏🏻

[Charlie_99 in reply to CTGirl1962]

Thank you for the prayers. My challenge is I already have a chronic cough and haven’t even started the Enhertu yet so definitely worried about risk of it getting even worse or life threatening so hard to know what to do. My onc says the lung inflammation occurs in about 10-15% of people on Enhertu. And I’ve read others had this experience. But odds are still in your favour and am sure you’ll be the 85% case. 🙏

[CTGirl1962 in reply to Charlie_99]

Hi Charlie!! Thank you for your prayers!! I also have an issue with my left lung. The doctors can’t seem to figure it out and they aren’t saying I have cancer in that lung. My problem is I can’t seem to breathe very well and that lung is having a hard time receiving oxygen when I breathe. I’m very scared. 🙏🏻🙏🏻🙏🏻

We’re in this together!! When is your first treatment? Mine is on the 27th. I just had a port placement last week.

Hugs,

Jody

[Charlie_99 in reply to CTGirl1962]

It does seem like we’re on a similar path with similar challenges right now. I don’t think my shortness of breath is directly from cancer either but don’t know what’s going on there either. I’m suppose to start Enhertu on 29th but going for pulmonary lung test first on 20th so hopefully the lung specialist will help me understand what’s going on. Not being able to catch your breath is scary and makes me nervous too. Hugs to you!

Fyi, Charlie is just my account name actually. Is your name Jody? Cuz that’s really a coincidence as my name is Jody too. Where are you from if you don’t mind my asking? I’m from Alberta Canada.

[CTGirl1962 in reply to Charlie_99]

Oh my goodness!!! Yes, Jody is my real name!!! I started to cry when I read your response. I hope and pray for the best for us!!!

I live in Connecticut. I have a lot of relatives in Alberta, BC, Ontario, Nova Scotia and Quebec. My mom was from Canada.

I think my mom sent you to me. I don’t like to get all weird about things like this, but God works in mysterious ways. I am 62 years old and I’m not ready to go anywhere yet.

We need to keep in touch! 🩷

[Charlie_99]

Awe this is so crazy!!❤️🤗 I also believe we have our angels looking out for us!! Trust in that. I’m 53 yrs old and have been so blessed and fortunate with the 8 years I’ve had so cannot complain at all. But indeed I am not ready as have lots to do yet. We both do! Yes please keep in touch. Do you know if we can private message on this site?

[CTGirl1962 in reply to Charlie_99]

I believe we can private message. I went on your profile and followed you. I’m not a stalker!! LOL I just didn’t want to lose you. I think if you go into the profile there’s a place to send a private message. Then you can tell if someone sent a message from alerts and chats. 🥰

[LDR1]

definitely talk to your doctor about this to see if it’s safe for you to start Enhertu, which has a 12% risk of causing pneumonitis. An alternative is Trodelvy which doesn’t have the pneumonitis risk.

[Charlie_99 in reply to LDR1]

I will thank you! It does worry me as 12% is not insignificant. I’ll check out Trodelvy too.