Breast Cancer - Herceptin - Heart and Lung Damage/Coronavirusa

[hypatiently]

Sorry if this isn't the right topic for this. I know I should probably contact my doctor but I wanted to check here first to see if I am being silly or not.

In 2014 I was treated for HER2 positive breast cancer and was given the drug herceptin (trastuzumab) and had subsequent loss of heart function and lung damage (I remember this was measured but I couldn't tell you numbers - I stopped the herceptin early because of this).

I don't feel like I was ever really "the same" afterwards. I am always exhausted and I always catch whatever is going around. I have just turned 40 and have an 11 month old baby.

Should I be self isolating or just very cautious? I am on the outskirts of London and my husband has to take a tube or bus to work.

Thank you!

No idea OP but I am similar and have been having similar concerns. I was diagnosed with BC October 2015, had chemo, rads and heceptin which damaged my heart and lungs though I did finish my course. I have no idea how we find out as I do not have any contact with my consultant anymore.

Its really frightening.

Thank you Stormy. Hope you stay safe and well If I find out anything I will let you know!

Can you get hold of a Macmillan nurse at the unit at which you were treated?

I have a different cancer, and have found my Macmillan nurse to be brilliant at all sorts of enquiries. I’ve just sent an email asking if I should follow the ‘over 70s/medically vulnerable’ advice which is widely expected to be issued soon. I’m fully expecting ‘yes you should’ as the answer.

I have been socially distancing for a while already

That's a good idea - I'll give it a try. Thanks iVampire!

Hypatiently - you too, please let me know if you manage to get any answers.

hi hypatiently

I had exactly the same treatment and problems as you and am now 25 weeks pregnant and i can't find any information on this.

Hello everyone,

I've sent an email and I'm still waiting to hear back. Hope you all stay safe and well and I'll update with any reply I receive.

Well I heard back but the advice was pretty wishy-washy. They said because my heart and lung tests were so long ago they couldn't say for certain. They said that since I wasn't currently on heart medication, I was probably at the same risk as anyone else but they couldn't say absolutely. They said I most likely didn't need to self-isolate but that I should avoid public places and contact with others - so...

I stopped the herceptin treatment because I didn't want to go on heart medication. They said my heart function has probably improved since then. Honestly my life hasn't been the same since - I just haven't bothered to do anything about it as I didn't want to be on an endless stream of medications. I just don't do all the things I used to do with ease - like walking up steep hills, etc.

So I guess there haven't been any studies into the long term effects of herceptin on heart and lung function? I think in the absence of these I am just going to err on the side of caution for the time being. I think it is a bit cavalier of them to say otherwise if they don't know with full certainty. I guess they are trying to do the best they can with the government advice and uncertainty about the virus itself.

I hope you all stay well and healthy - sorry to not be more help!